THE WONDER OF WYSDOM

Great News Wysdom is G Tube Free

2012-01-18T01:00:00.004-05:00

I can't barely believe it. Wysdom is now g tube free!!! Yeah. Wysdom got his g tube when he was almost 1 year old. Actually just a month before his 1st birthday. We were told that he would likely have it for life. However with much determination and patience we have worked hard to get it out. Wysdom has not used his g tube for almost a year. So this week we went for a consultation to see if we could get it taken out. Yes it did serve us well, however for those of you that know our story well also know that it caused us a lot of problems as well. I think we might have broken the worlds record for g tube problems and infections. One each month almost for the first year.

So when we got the hospital on Monday they decided it was time to take it out and suggested that we do it right on the spot. To be honest I was a little nervous and really not prepared. Usually everything is a bit of a fight. So when they were ready to take it out I couldn't believe it. Our options were to take it out right away, plan for sedation or to have him pass is through his bowels. Well a big red flag comes up when you mention passing it though the bowels. So that was a huge NO. The next option was to sedate him in a lab and then take it out. Well we all know for Wysdom sedation proves to be difficult. We have been turned away from sedations and omitted to the O.R or another hospital because he is such a high risk. So this was not on the top of our list, especially since they would end up putting a tube down his throat.

So the last option was to do it in the office. They say that is supposed to feel like a punch in the stomach. That it hurts, but is quick. After asking our trusted nurse who we always see what she thought we went for this route. I volunteered Julian to stay in the room with him, as I felt so nervous and a not as strong as I could have.

They told me to walk down to the elevators and back. On my way back the nurse was already out telling me that it was done and that I walked to slow. Yeah. When I went in, Wysdom gave me a little cry and then a big smile. He has been nothing but smiles since. I am sure he feels better. He is climbing on all of our furniture and I even saw him standing with no hands. Yes he is looking for it...but I keep telling him it is gone and out.

So blessed that he is eating and drinking on his own. So thankful for such a positive outcome!!!! So all of you trying to get rid or your child's g tube or ng. Keep faith that it can happen, even though they don't tell you that!!! "Beach here we come"! That is the first thing my sister said. Since we always had some much problems with the tube we have really restricted Wysdom's exposure to things that would irritate the g tube- like sands. So it looks like we can be free to go to the beach and in the water without having to worry.

Happy 3rd Birthday Wysdom

2011-11-28T02:49:00.013-05:00

I can hardly believe that Wysdom is 3. I am so excited for this big milestone.

Three years ago I gave birth to a very small 4 pound baby who had a prenatal diagnosis of Down syndrome. My labour was an eventful one. It actually ended up being an emergency c section. Wysdom's heart could not take the stress of the contractions and after about 12 hours with lots of poking a c section was scheduled. You can read the whole story here.

Wysdom was born with a feisty cry. He was beautiful and that was all I saw. Pure beauty. I got to hold him before they whisked him away to monitor his heart, because he was born with a AVSD (heart defect). Although the road has not always been easy, especially dealing with open heart surgery, an ng tube and g tube. Having Wysdom has been one of the most rewarding things in my life.

Wysdom has blessed our lives with LOVE, LAUGHTER and such SPIRIT that I can barely describe it. Never have I regretted having him and if there is one thing that I could tell other mom's with a prenatal diagnosis is that your child is beautiful. We could not imagine our lives without Wysdom. Blyss loves her brother so much that she has made her own chocolate cake with decorations, bought a present and filled a surprise box full of balloons for her brother.

If I was asked to share one thing about our lives, I would say " when you get that prenatal diagnosis of having a child with DS the gloomy delivery of the information they give you and the sad faces are just not accurate". Very few tell you how your life will be enriched and full of love. That you will love your child unconditionally and that you will learn so many new things about yourself.

Happy Birthday my big boy!!! We love you more than words can say.

Preschool, Buddy Walk and More.

2011-11-10T01:44:00.004-05:00

Well it has been busy. I can't believe that I have not posted on here for so long. Even though it has been extremely busy, things are also very good. Wysdom although he happens to be sick this week( with a cold and infection) he is doing good.

Wysdom started going to preschool 2 days a week at our local centre. He seems to be adjusting really well. We stay there with him and can watch him via an observation room. He is making lots of progress, staying in the room by himself and finally getting him to sit at the snack table.:)

Right now we have not used the g tube for months and months. So we have been seen by our pedi and now going back to the specialist who put it in and setting a plan in place for getting it out. Wysdom is still eating a pureed blend of food, however we have made HUGE progress with his food.

We recently had our local Buddy Walk and the children loved it. Wysdom was a hoot. He held his little sign and waved it at the cars and people. This is so funny and really amused us because he never really holds onto anything for that long. So it was cute to see him do that.

I will try to post some new pics and video's soon. Just wanted to let you know that we are still here and okay.

I Love this kid: Updates

2011-06-23T00:23:00.012-04:00

As everyday goes by, I find something new and exciting about Wysdom. He is always amazing us with his great personality, eagerness and just pure love of life. I can't describe how much joy he brings to everyones life. I am so happy he is a part of our life. For those that are new to this blog you can read about our journey here.

I know I haven't been posting as much as I used to. I am going to try to keep up the posting a little bit more. Truth be told both my hubby and I are working on some projects right now that are keeping us very busy. Oh course Wysdom is also keeping busy and so is Blyss. Ha, 2 children under 5 is keeping me on my toes.

Some Updates

Standing/Stander
Today we got a new stander for Wysdom. This is his third. We really we have had one stander and a pony walker before. Now we are onto our 2nd stander which I think will be great. It takes up a lot of space but we are so happy to have it.

Today when it got set up, Wysdom went in it like a champ. He now has his orthotics and we are really trying to work on his standing and building up his muscles. He is eager to stand on some days and other's he is not so keen. When he was put in today he was so happy to be standing up. To keep him entertained we had Blyss put on the Let's Dance on. So while she danced, Wysdom started to dance. Can you believe that he has a lot of the dance moves memorized. Blyss is an avid dancer and she loves music so this is a part of our house. So Wysdom really picks up on this. However I didn't realize how much. He can shake and puts his hands up above his head and follows the directions. I so have to get this on camera the next time that he does this. The funniest thing is that I have learned that he has some strong music preferences. He definitely is more of the hip pop, reggae loving boy. He seems to really enjoy this rhythm.

EYES
We are that we are still patching his left eye. He still loves to use just his right eye, however we are trying to get him to balance using both eyes. It is a bit tricky to do patching since he can take off the eye patch. So we have to sit with him and literally hold his hands. Yup! He can take the patch off. We have tried sticky patches, cloth patches, hockey equipment on his arms to prevent him from bending and taking it off ( suggestion from clinic ). Nothing else works right now. So if you have any ideas please let us know.

G-Tube
Feeding is going well. We now don't use the tube for any feeds!!!! Yeah. He still has the g tube and we just flush it with water. So we are really happy about his progress. He is still getting a blended feed that we make up in the Vitamix. Our goal is to get the Tube OUT!!!

Talking & Sign Language
Wysdom is doing really well in communicating with us. He used a LOT of sign language and also says a good handful of words. He is so into imitating what we do. If we sneeze, so does he. If we laugh, so does he. If we dance, so does he. He so loves his sister and she loves him so much, so they are having a lot of fun together. As long as he doesn't beat her up!!!

Oxygen Test
We have had a repeat pulse ox test and that didn't go that well. I am not sure about the results yet, but he would not keep it on for the 4 hours needed. I seriously got 1 and yes I repeat 1 solid hour done. The rest was hit and miss. The first one didn't have enough time of storing his stats. This attempt, we had less. ugh....

Otherwise all is good. We are really busy. However that has been the norm for us for the last couple of years. Hope to take a video soon and let you see my cutie pie!!!

Oxygen Monitor: Not Fun

2011-05-03T22:06:00.004-04:00

Well to all of you who have your child where an oxygen monitor at night...I don't know how you do it? We had to have Wysdom wear one last night and that was an ordeal to say the least. For the first two hours it was okay. The monitor did not make any noise and just lit up. Since we were just doing this for a test night, I didn't want to touch and change anything.

However then Wysdom started to get fussy and kind of wake up. Once he saw and felt that on his finger he threw if off, pulled it off, shook it off. You name it. We were only trying to get 4 hours for the study. But that was pretty difficult to do. I could not image having to do this every night, unless there is some other type of device.

We handed the box in today and are just waiting for the results. I think that we will have a sleep study in the future. I am actually thinking that his issue might be some sleep apnea and reflux.

What are your nights like? Do you experience trouble with the nights? How does it effect your schedule?

FOODMATTERS DVD Giveaway!!! Enter Today

2011-04-28T12:08:00.008-04:00

If you are interested in food and your health then this is a documentary that you will want to see.

FOODMATTERS breaks down what is happening in our society today with our food and illness and how they are connected. Every wonder if what you are eating or feeding your family is safe? FOODMATTERS takes a look at all of these questions. Top health experts in their field talk on camera about these key issues.

For your chance to win a free copy of this groundbreaking DVD stop by Blyssful Health (my other blog) and enter your name.

Cardiology Follow Up and Eye Appointment

2011-04-20T00:50:00.004-04:00

Well we have had an extremely busy last couple of days. Today we went to our children's hospital about an hour away. Wysdom first had an eye appointment. His eyes cross and shake, so we have been doing patching for a long time. We switch eyes depending on how his eyes are responding. Normally we patch for about 45 minutes and that pretty much is not fun, because Wysdom can pull it off in a second and he does so. So we went last month to check his eyes, but he would not cooperate so we came home. So this time he still did not want to cooperate and what I mean by that is that he won't open his eyes, and he is actually strong enough to keep them closed.

Needles to say they had to use some equipment to keep his eye lids open. Can I just say that I DID NOT LOVE THIS AND EITHER DID WYSDOM. If you have ever had this done to your child, I am sure you agree with me. It was hard for me to watch. I mean it only took a short time, but I couldn't handle it so well. Shed a few tears, maybe more than a few in the office. Verdict is that we no have to patch his eyes for a total of.....4 HOURS. Ha. I will let you know how that goes. I am going to have to figure out some contraption for his patch. We are trying to get his brain to use both eyes the same amount of time. Right now he uses his right eye and his left eye is weak. When they are balanced the we can go to surgery to try and fix the crossing.

Next....

We went to our Cardiologist appointment. We had an echo done at Sick Kid's about a month ago. We also had one done today too. This was a big appointment and I am glad to say that all has stayed the same. This is the best news ever!!! He still has a leak both on the right and left side of his heart and some narrowing on the right that they will watch. However all is okay now, We just have to do a "holter" not sure it that is the correct spelling. The contraption that they wear to monitor their heart beat. Once we do this we are not looking to go back for a YEAR!!!! I can not tell you that I am so relieved.

We still have a sleep study to think about as Wysdom is not sleeping well. So it might be a lung issue, or ENT issue.
I will keep you posted. All in all it was a busy day and Wysdom did his best. He was cried for a good portion of the day, and was happy to come home.

Next stop. Last RSV shot of the season in the morning. Oh boy he is not going to be loving this.

Look at this handsome face!

2011-04-17T01:12:00.003-04:00

I love this little face. I could just hug him up all day. I will show some more pictures of Wysdom and some new ones of Blyss as well. Things are going well. We got a new Pedi this week (thanks to my mother's group for supporting me and giving me a little pep talk in this area) My new Pedi seems great and she did a very detailed history of Wysdom's history this week.

We are pretty busy as per our usual schedule. This week coming up we go to an eye appointment and a (Yikes) cardiology appointment. Of course I am nervous for the cardiology appointment as we get the results of Wysdom's echo. For those of you that are new to this blog, Wysdom has open heart surgery at 6 months of age for an AVSD. He has been doing awesome since with some minor leaks in his heart. We are keeping our fingers crossed that we will have good news on Tuesday. That things have stayed the same or got better would be great news.

As per the feeding Wysdom is doing well taking our blended puree that we make at home. We are going to start with textures and reintroduce it to him as well as flavours. Hoping that he enjoys these new elements into his meal time. We are barely using the g tube and we are hoping to get it removed in the future.

Hope all is well with everyone. Sorry this post is short...but I am up late and very tired.

He's All About Communicating.

2011-04-04T23:04:00.005-04:00

Wysdom was described recently as being "communicator". He his signing, saying some words and just all around telling us what he wants. He is using lots of non verbal cues to communicate with us. We go to a lot of different therapy appointments and one of the great things for me is that they can help me keep on track. They help us use two way communication. So many time I just want to do things for Wysdom, or say what he wants, or I am in a rush and move around to quickly. I have learned that if I am always doing this how am I helping him? If I take my time and WAIT I can learn and lot about him and see what he wants.

So one of our therapist can over about 2 weeks ago and asked about him communicating. I talked about how he can do a lot of signs and how we are so impressed with this. She gave me some great examples of how to get to use more of the functional signs like help and open and then we set up the correct environment for a dialogue to take place. Low and behold Wysdom is bossing me around these days. (ha ha). He picked up on this right away and within a day was commanding for things to be opened or that he needs help and he is doing it with some flare. Not just a meek open, but I imagine his sign communicating OPENNNNN!

We truly are so proud of how he is doing. To be honest I don't compare him to other's and their speaking abilities. I am not sure why I have never done this, but it doesn't interest me right now. It may in the future, but now I am just happy with our little guy and all that he is doing, especially in light of all that he has been through.

We are still using Signing Time Products daily to increase his signing and ability to communicate. I wish I could remember the name of the mom that introduced me to the company. I believe in signing so much that I have started teaching my own groups. Oh yes one of my favourite signs that Wysdom does is SCARED !!!!!!! I will have to get that on video. I just love it

Other updates are that we went to an eye appointment last week that took the entire day and Wysdom did not cooperate. Meaning that when the Opthamologist tried to look in his eyes, he closed them as tightly as he could. Sooooo (can you hear the sigh) we go back in 2 weeks. In the morning we go to a physical therapy and occupational therapy. Then in the afternoon we pick up his new orthotics. Otherwise things are going well. Just really busy.

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Have a great week.

Wysdom and a Bottle of Rum

2011-03-27T23:11:00.004-04:00

Yup you read that correctly. Need I say more. Wysdom is becoming interested in moving around and touching new things. He is still doing the bum scoot thing and the commando crawl, but he is expanding his reach and activities. So I am not sure if this happened today or yesterday because the days seem to blend together. Whenever it happened it provided us with a good old laugh.

My husband and I watch Wysdom really well. This mostly has to do with his medical history and his feeding tube that he loves to play with. As well he has some pretty sharp teeth and he likes to bite things like computer wires, his sister and paper. Truly he has always been monitored really well since birth and we have just continued with this as he is getting older. So... imagine my surprise when I walked into our living room and he was looking in a china cabinet and had a large bottle of "rum" sitting on the floor in the middle of his legs. It was unopened and a plastic bottle so no immediate need for screams. As most of you know my parents passed away last year. So I inherited some of their furniture which included the cabinet. We also inherited some of my dad's collection from his bar. So I figured to be sentimental that I would put everything in the same cabinet in the exact same spot that my dad kept it. We really don't drink a lot these days. We haven't opened the cabinet in a while but I think that night I felt like a glass of wine.

I have seen Wysdom tug on some of the doors. Especially the door that keep all of our video's. He has never attempted the other doors until now. So you can imagine my face when I walked into our living room. My husband was there with him, but probably thought he was playing with his toys. Maybe he saw Julian take out a bottle of wine and thought "oh this looks like fun, or new".

The good news is that he is learning to explore his surroundings and is using his fine motor skills. Yeah. I am all for that of course. However we know need to figure out how to make this cabinet child proof....of ya and almost everything else in the house.

Hope this gives you a good laugh. I was so in shock that I didn't get to take a photo.

We have been crazy busy with lots of therapy appointments that I will post about later in the week. I just wanted to share this story.

Have a great week everyone.

2 Baths In a Row Mommy?

2011-03-19T22:53:00.007-04:00

Wysdom is keeping us really busy. If I had a camera and took a video of the last couple of days....I am positive I could win money from somewhere. Julian is usually out and then Wysdom has a big accident in his diaper. It is not really an accident as he is not potty trained yet. The accident part is that it is a mess. I am home alone with Wysdom. Then I hear Julian and Blyss outside getting ready to come in and I scream...Come Help me. Then it becomes a whole family affair. Blyss gets the bags, Julian holds his hands and legs sometimes. I try to clean him up and then we just run out of hands.....

That's how bad it is? Do your little ones have any accidents. Love to hear some of your funny moments with your little ones.

Also check out the post below for your chance to win a cookbook or health book. You have until Monday to enter.

Book Giveaway: Get Healthy With Us!

2011-03-17T00:28:00.005-04:00

To all my DS mom's I would love for your to come over to my food blog and enter our contest. I have a selection of 4 books for the winner to choose from. The only thing is that you will have to comment over at Blyssful Health. That will help me keep track of everyone.

These books focus on healthy eating, juicing, and eating to be well. Please stop by and enter. Blyssful Health

Wysdom is well. Sleeping now. We have had a busy week with an echo, and fitting for orthotics. Will post more on my little handsome man later. For all of you that commented on the echo post, I left a brief comment there on how the day went. Thanks for the support.

It's Echo Time Again

2011-03-13T23:50:00.006-04:00

Well I am not going to lie. I am a little bit nervous about our appointment this week. We are heading out of town to get an echo done for Wysdom. We will leave at 7am to make it there for a 9:OOam appointment.

I am hoping for some good results. I feel like Wysdom is doing well. There was some concern at our last cardio meeting. Nothing urgent but just something to think about in the future. So we are going for the echo to make sure all is well. They will put him to sleep which is usually fine. We usually go to a smaller hospital, however they will not do an echo on Wysdom without putting him totally under with a breathing tube. He is seen as such a risk that they don't want to do it any other way.

So off we go to a larger hospital where they use a liquid to sedate him. This is much easier as it is just put in his g tube and therefore no tubes in his mouth. They did ask if I thought he would tolerate a different drug that would keep him awake, but just more relaxed. My answer was "Nope..he won't go for that" Really Wysdom has had a lot done and I think he would not allow anyone to touch him even if he was made more relaxed. Ideally this would be the better way. So we will see how it goes.

I did learn that after the age of 3 they do not put children to sleep so he will eventually have to get used to being touched as after 3 years of age he will have to be awake. For all of you that have never seen an echo done it is a painless procedure that is like an ultrasound but over the heart. It doesn't take very long...but to my little man it is awful. He doesn't tolerate a lot of things, and I can't blame him.

Then on Tuesday we go to make casts for his feet for orthotics. I am excited to get this done as I hope it will help Wysdom out. Oh yes and the good news is that he seems to like the Pony Walker. He has figured out how to move forward and is enjoying it so far. He does go on his tippy toes though. He is just so THRILLED to be able to move around. So we are really excited about this.

I will have to post a video of him in it as he dances to Hannah Montana or Justin Bieber. These happen to be my daughter's favorites, so Wysdom has no choice but to love them too.

Ps. Stay tuned for a contest on my food blog this week. If you want to get healthy or try some new recipes you will have a chance to win a great book.

Pictures of Pony Walker & More

2011-03-06T23:15:00.009-05:00

Last post I asked if anyone had used a Pony Walker to help their child learn to walk as Wysdom is still not really interested in standing. I got a couple of comments asking for a picture of it. So here it is plus a few other pics of Wysdom.

So here is the pony walker.

Wysdom is sleeping now so that is why he is missing. He gets to sit on a little cushion and the idea is that he uses his feet to move the walker and then can become more mobile.

We have only had him in it a few times. He doesn't seem to mind it, however not sure if it will help or not. It is so new that we will keep trying. We do have an appointment for casting for his new SMO's in two weeks.

This is Blyss and Wysdom playing with each other. This position often ends up in someone crying from getting hit in the head by Wysdom head.

This is my little sweetie eating wipes. Yup he is loving it and was even doing it more for the camera. I guess I shouldn't really take his picture while he is doing this. The cute thing is that he will look around and pretend he is doing something and the second you walk away....Yummm Wipes.

Lastly, this is a picture of Quinoa Stuffed Peppers from my foodie blog. Come sign up over there for info on recipes, health tips and fun contests.

We have lots coming up in the next few weeks with Wysdom. An eye appointment, physio, however the biggest and scariest is his echo for his heart on March 14th. Will keep you posted. Have a great week everyone.

Pony Walker/Stander?

2011-03-03T23:24:00.004-05:00

We now have a pony stander or walker. Not sure which is the correct name. Anyways we have this on loan to try to help Wysdom stand. He is not really interested or maybe not comfortable standing. We had a traditional stander for a while but that didn't seem to do it for us. We try on our own by holding him and that works a bit.

So now we have a pony walker. He sit's in this chair type of thing and get's strapped in and then he is supposed to use his legs and move himself like a bike. So far he is interested in chewing the foam at the top where the tray is located.

Just wondering if any of you have used this little apparatice before and how it worked out for you? As I mentioned before we are getting SMO's for Wysdom's shoes and this well be done in about a week or so. I am really hoping that they help give him some stability. I would love to have him walking around.

I do realize that he does things so totally in his own time, but would love to get him off the floor and walking around. Especially since he is wearing a cute hockey jersey today!:)

Love to hear what worked for you and your little ones with walking and motivation. I figure that Wysdom has pretty low tone so it is really hard for him.

Two show feature DS issues in their plots this evening.

2011-02-25T02:24:00.007-05:00

Did anyone happen to catch Grey's Anatomy or Private Practice this evening. Both episodes had Down syndrome as part of their content. Thursday night is my tv night and low and behold the topic was brought up.

Grey's brought up the topic in the form of prenatal testing.. Two doctor's shared different opinions on this. The one that seemed to be expressed a little more was that a special needs child may have a lot of medical issues. Then they brought in the option of doing a amnio and the risks of it.

The second show which followed and is by the same producer focused more on a teenage girl with Ds who is pregnant. Her mother did not want her daughter to have the child and took her daughter for an abortion. The doctors on this show questioned what to do in this circumstance and if the girl with DS could help parent the child. Ultimately the mother of the girl with DS made the choice for her daughter without telling her that she was going for an abortion.

Just wondering if anyone watched these and what your thoughts are on this? ( Hope my description is clear. I am a little tired.)

I think it is good to see more shows talking about DS on TV. It does bring the topic of genetic testing to the forefront and hopefully makes people thing. However I wished they took a stronger role that it is okay to have a child with DS.

Or some type of information such as a link to a Down Syndrome Association online that is connected to their show. Some parents right now trying to make the decision about their child might have been watching. I was proud and happy that the girl with DS did a good acting job. The more exposure to DS the more we can talk about it and not try to ignore the topic of prenatal testing and termination rates.

What are your thought.

Documentary of Monica and David

2011-02-23T16:08:00.007-05:00

Last week I was finally able to watch the documentary called Monica and David which shares the story of 2 adults who fall in love and get married. They also happen to have Down Syndrome.

I am sure most of you have seen the documentary already. However I just wanted to see what your thoughts about this documentary? Did you enjoy it? Was it hard to watch for any of you? Was there something that you didn't like about it?

I personally found it easy to watch. I know some people have a hard time envisioning what their child with Down syndrome will be like when they grow up. I am not one of them. Maybe because we are so busy, I tend to stay in the present or maybe a year or two ahead, but that is about it.

I love the relationship between Monica and David and I loved how they showed them doing their daily routine, taking care of each other, and loving each other. the only thing that maybe bothered me for a second was that the mother was so protective. I felt at one point that she didn't want her child to interact with the public as much. Did any of you pick up on that at all?

Overall I would recommend it to parents of a child with DS, but also for family and friends in our worlds. Maybe one day the medical field and prenatal counselling departments can offer this as a resource for parents hearing about their child's diagnosis. Instead of all the negative information and they could one day say... "Here your copy of a Love Story to view"

Does your child hate the thermometer?

2011-02-22T00:37:00.011-05:00

Okay really does your child hate getting their temp taken? Do they go into hysterics when you try to it. I am wondering if you have any neat little tricks that work for you? I am guessing because Wysdom has had a lot of stuff done to him in his short sweet life, that he doesn't care for anything that resembles his past stays at the hospital.

We are in the middle of an illness marathon shall we say. I think that I must have jinxed myself about a month or so ago. I was so proud that we were not sick and doing well. Since Blyss started school this year that was my greatest fear. Although I don't think I have the energy to home school like some of you out there. The thought of illness and germs paired with Wysdom gives me chills.

So when I went and said that comment about being so lucky....low and behold it started. First Wysdom had diarrhea for about a week(talked about this on an earlier blog). Then he got better. Blyss then got diarrhea and was throwing up a day after he finished. Since it presented differently we thought 2 different things so we separated them and masked up(wearing masks was something we learned from early on and use it in the worst circumstances). Then it took a week and she got better. Then I sent her to school and within a day and a half she had something else. A high fever and a cough. This is still going on, well at least the cough.

Then low and behold two days ago Wysdom gets a fever, a g tube infection (possibly) and a cough. So they are still somewhat separated and my husband and I are in survival mode a bit. I seriously have been in the house a lot lately and going a little stir crazy. Of course things could be worse, we all know that. But come on already!!!

This morning in attempts to make Blyss better I made some fresh orange juice and in attempts to make me feel better some kale, green apple, celery juice. You can check it out here on my other blog which I should have called Midnight or late night blogger.:)

Ps. I am still so grateful...just needed to vent as I sit up for about the 10th or maybe even 12th night watching over both of my babies until I wake dear hubby up at 3:00am. Actually I can get a whole lot done at this time it just doesn't help with my
resistance the the morning.

Just Grateful.

2011-02-16T00:27:00.004-05:00

This is a cake that Blyss made, iced and decorated today. We made this cake late as both Blyss and Wysdom were sick last week. So we delayed her Valentine's Day activities. She was so proud to do this and was thrilled when I said that I would post it on the blog for her. Oh yes...a belated Valentine's Day to everyone of you.

Then there is Wysdom spreading the love and cheer as usual. Just loving this face.

I am tired from this last week of sickness in our house...but just so grateful for our family. Tonight I worked with Wysdom on trying to stand. I found an interesting way....to put him in front of the T.V. and get him to try to touch the screen while Baby Signing Time is on. For the first time today while I held him up...I saw him move his foot. I can not tell you how great of a moment that was. And oh how he laughed and laughed and laughed. He laughed so hard for a moment I thought he wouldn't be able to stop.

Just Grateful.

Oh gosh....Sick, Sick and Sick

2011-02-08T22:34:00.008-05:00

Need I say more. The little ones are sick. First it started with Wysdom and he had some diarrhea. He had no runny nose or anything. So we were just thinking that it was his teeth. Low and behold he is on pedialyte for a couple of days and his food stopped for a day and got dramatically reduced. Finally he starts to get better and we are thrilled. Usually he is so happy and fun and lately he has been just laying around kind of moaning.

Then the day came were it seems to have passed. Both Julian and I are thrilled. Blyss comes home from school and we are all just happy that he is better. Blyss decides to lay down and about half and hour later, she THROWS up. Ughh. It seems to be different than what Wysdom has or had. Julian and I can't believe it. So we sectioned the living room off. Half for Wysdom and half for Blyss. The gloves and all come out and the late late nights continue. Last night I went to bed at 4:30am. Seriously. That was one of my latest nights. Blyss had a bad, bad night. Fever, vomit, and diarrhea. Today she is a bit better but still on the mend. Wysdom is a bit better too.

Here is a shot of Wysdom starting to act like himself. He is pulling all the clothes out of the basket and putting them on the floor. Then he fell asleep for a minute in the pile of clothes. So cute.

At least while I was up last night until 4:30am watching them in the living room.I was able to make some some homemade cereal which I posted at Blyssful Health.

Anyways...on to getting better.

Orthotic's Anyone?

2011-02-02T00:25:00.008-05:00

Well it looks like we will be getting Orthotic's for Wysdom. We went to physio today and it seems that he has very loose ankles. (She said a lot more than that and a lot more technical) Anyways,I do know this to be true of course. I see it everyday. Wysdom is really not interested in standing to much. Well he is just starting to become interested. I always think when he is standing for a few seconds that his ankles seem really small and fragile. They also turn or he rotates them and only steps on a part of the foot. So off we go to get some support.

I really have not experience with Orthotics. I have experience with g tubes, but not this. So I am going to have to learn a little bit about them. From what I understand is that there are different types. AFO'S, KAFO'S, SMO'S, KO'S and probably a lot of other options. Our physiotherapist did mention that Wysdom would be getting SMO'S, I believe.

Hey whatever helps him move around seems like a good idea. I actually think that I will be ordering some hip helpers as well. Wysdom is so flexible in his hips and since we have no carpet in our home his legs are spreading everywhere.

If you have any experience in either of these areas I would love to hear from you and how it has helped or what challenges you face with this supports.

New Food Blog

2011-01-29T18:11:00.013-05:00

I have been talking about do a lot of little projects from home in my last blog or two. Well one of them is to start up a food blog. I have a background in holistic nutrition and I am currently enrolled in a raw food course. Prior to getting pregnant with Wysdom I was working in a health food store. I have always really loved trying new foods and making smoothies and experimenting. So if any of you DS blogger's are into the same thing or want to join me come visit me at my other blog(still very new) at Blyssful Health

Since this is quiet new the content may change. However I feel like I will be posting some recipes, talking and sharing what we put into Wysdom's blended diet, sharing smoothie recipes and reviewing health food products that I like. As well as sharing where I find a lot of free resources.

Come drop by. I would love to see over there too!

Want a good laugh?

2011-01-27T23:07:00.008-05:00

The hazards of tube feeding!!! We often have a mess with tube feeding. However this is the most hilarious thing that has happened.

If you are a tube feeder, you are I am sure familiar with leaks and mess. If you are not let me explain a little. Wysdom is feed partially by a g tube. A peg one to be specific. He loves to play with the tube and since we still have a peg with the connector(a long tube connecting to his g tube) it is really easy for him to reach. Sometimes a kink happens in the tube just like it would in hose. When that happens the food "Reverses" directions and Shoots" out at a high speed and anyone and everything is victim. Usually it is our clothes, the floor, his chair or our hand. However this time it was Julian's eye. Hilarious
(ps. this is my husband taking a picture of himself to capture the moment)

Am I In Trouble Mommy?

2011-01-25T16:55:00.010-05:00

If Wysdom was talking a lot I am sure his favorite saying would be "Am I In Trouble Mommy?" Or can I have some Ketchup on these computer wires they are so tasty? Or maybe even "See that bottle of oil...it is not heavy. I can pick it up like a piece of paper!!"

Oh, of course I am just joking with you all. Wysdom is hilarious and he is not in big trouble. He is just into everything that I never thought that he would be into. Since he has his oral aversion or had one I would have never guessed in my wildest dreams that he would be putting raw potatoes in his mouth, or even the bag. Or wires, wires and more wires. Oh yes and saving the best for last is his sister's feet. Yum!!!

I can't blame it solely on Wysdom as to why I have not blogging as much.(I have been busy working on some new ventures that I will share in the future and closing the deal on my parents house). But we sure are busy here chasing our little man who moves around with such speed that it is really remarkable. Gotta love his drive, his energy and his determination. Even though I am joking about him being in trouble...We really do love it!What's is your little one getting into these days?

Luckily he is taking his second power nap of the day, so I write. It must have been all that moving away from daddy this morning at 3am that has gotten him so tired!!!!!!!!!!

The Promise Of A New Year...

2011-01-11T20:46:00.008-05:00

I have many goals for 2011. Let me just say that I am pretty happy that 2010 is over with. Last year was a really bad year for me and my family. For Wysdom it was a good one though. So I really want to break from the negative things that happened in 2010(my mother and father passing away) and move into a new fresh year with new hopes and goals. I have always been into writing my new goals for the year. I am not saying that they always work out....but I try. Some of my goals are personal, some family oriented and then some specific ones to each Wysdom and Blyss. Health for the whole family is really important, because when you are not healthy, everything is affected.

My specific goals for Wysdom are pretty clear. To provide him with the best possible environment and resources to develop in his skills. Specifically his gross motor skills and feeding skills. Wysdom has the motivation to do a lot. I would say he has pretty high motivation and he is determined. It is just finding the right way to challenge him. Right now for example he is scooting on his bum and also army crawling on his tummy. For him the challenge is to crawl and stand. If given the right goals and instructions we hope for him to flourish in this area. Secondly, a huge goal is to continue with his feeding plan and try to wean him of his g tube. We currently are in a little bit of a weaning program right now where we are trying to get him to take as much orally as he can. Oh yes, and of course to stay healthy. Oh yes I would also like to have a financial plan set up for Wysdom and Blyss of course.

For me I have several goals. One important one is to somehow continue to blog even in the midst of our chaotic days. I HAD a pretty good following of bloggers. To be honest I have let my blogging slide and I would like to get some of yall back. :)!!!
I also have some specific health goals and personal goals that I will share with you all later that include eating healthy and de-stressing.

I would be really interested in hearing other's goals for the new year for you and your family. What do you plan on working on this year and would you like to join me on my journey of keeping to your goals?

Merry Christmas

2010-12-24T23:10:00.003-05:00

Wishing you all the best holiday ever. Merry Christmas to all!!!

We had Christmas Eve with my side of the family this evening. We actually had a pretty good time. Since this is the first Christmas without my mom and dad, I was not sure how I or everyone else would handle it. Thanks to our gracious hosts....we had an enjoyable time together and the children had a blast. Christmas day will be a bit harder as it usually was a huge production and party at my parents house. As well it was/is my mom's Birthday. So we will see what the day brings. I am open to giving it my best shot...

For all of you special mommies out there have a great day. Love ya all. Merry Christmas and Happy Holidays.

Birthday Pics!!

2010-12-13T23:22:00.019-05:00

Finally I got a chance to post some birthday pictures. There are more to come. We have been sick for a week and a bit so I am really behind. Enjoy!!!

This is a little glimpse into the last 2 years.

This is the 2nd party that Wysdom had. The first party I have not posted yet. These pics are at Julian's parents house where they held a big party for Wysdom.

I love this one. Not because he is showing his interest in the tech world...but because he is sitting so nicely.

Isn't he getting big!

Of course we can't forget lovely Blyss!

Happy 2nd Birthday Wysdom!!

2010-12-02T18:42:00.006-05:00

Can you believe it. Wysdom is two years old. Okay mind you it was more than a few days ago (bad mommy for posting this late. It was actually like 2 weeks ago). Wysdom turned two on the 28th of November. We had a small party for him at our house of just my side of the family. This past weekend on Dec 4th we had another party for him with Julian's family. This year you can really tell that he knows that something is going on. He seemed excited with the decorations and put his little fingers into the cake. Oh yes and of course he was into opening the gifts. Anything with paper is a big hit!!!

At the time of the first party I had lost my digital camera and had to use an older camera that my mom owned. So I am still waiting to develop those. However the good news is that the digital has been found and some new pics should be up soon.

Wysdom is so busy right now that it is hard to even type on the computer. We love it! He is so into everything. We are now attempting to put up the Christmas Tree and see he thinks of that.

So I know this post is short and I haven't been keeping up with blogging as well. However i just wanted to say a big THANK YOU to everyone that came to his parties and who celebrated this huge milestone with us. Thanks for all of your gifts and cards and donations for Wysdom!!!

We Are Still Here!

2010-11-10T23:27:00.016-05:00

I am still here. Wysdom is still here!!!I am personally bruised and beaten down by life and the loss of my parents ...but I am still here. I know I have not been on my blog for about 2 months now but I just wanted to thank you all for your comments and prayers that you posted for our family. Special thanks to all of our friends and family that traveled from out of town to come to the funeral. As well as my old school friends that showed up. Thank you. Your support has been great.

Over the last month my sister and I have emptied my parents home and put it up for sale a couple of weeks ago. Now that the house is on the market we have gained some of our own personal time back and thus I have a chance to slowly get back into blogging and catching up on your blogs.

In all this mess and grief that our family is going through with the death of my mom and dad this year...Wysdom still seems to amaze us. Especially in the last 2 months since my dad's death, Wysdom has thrived(I just haven't written about it). Blyss is thriving too. The two biggest things that have happened is that Wysdom has started to become mobile and Blyss started JK.

Wysdom is progressing so much in the last little bit especially in his gross motor development. Yes he is very behind of where he should be....but we don't care. He has had the challenge of this g tube delaying him even more than just his low tone. For s0o many months we have purposely kept him off his tummy due to his numerous g tube infections(as many of you know). We have in a way been stunned by his development in the gross motor arena. Low and behold in the midst of my grief....he thrives.

Imagine a child that spends almost his entire day in a bouncy chair. Just lounging and unsure of his body movements let's say. Then imagine a child that one day decides to flip himself out and start to explore. Start to explore by rolling and sitting. Then bum scooting backwards, and then a little forwards. Then doing some contortions and switching from sitting to tummy by doing the splits. Yes...the PT(physical therapist) or any PT may not like his technique, but everyone loves his motivation, drive and creativity. He is learning so fast everyday and is truly amazing us. He continues to teach himself how to move around. We are thrilled that he is starting to crawl and be mobile. He is starting to become interested in putting pressure on his legs and wanting to stand on our lap. This is huge for us!! With lots of effort and his motivation we hope he will start to stand.

To be honest I have often commented that my father is sending Wysdom some energy or helping him out some how. Truly it was at the sane time as my father's death that Wysdom instantly started moving around. Coincidence or divine intervention? I am thinking divine intervention. Both my parents loved Wysdom beyond words. My dad was really interested in if he was going to be able to move around in his last few months alive. So maybe Wysdom is getting a little help from his two very special angels watching over him now.

On the weekend we were able to go to our third annual Buddy Walk. Pics will follow. I lost my camera so I had to use an emergency disposable so pics will take a little longer to be posted. Anyways, we had a great time and for sure both Wysdom and Blyss had a blast.

Bad News Again!!

2010-09-13T17:46:00.003-04:00

I know I haven't been on here for what seems like forever. I just want to let everyone know that Wysdom is doing well. However my father lost his battle with cancer yesterday and has gone to join my mom.

Just wanting to let everyone know that the Funeral will be held at Henry Walser on Saturday at 10:00am. Viewing will be on Friday night at 6-9pm.

Thanks
Sasha

Passed Our Hearing Test

2010-07-29T20:08:00.006-04:00

Finally we passed our first hearing test!!! This is a big thing. We have failed numerous tests. Actually way to many to count. We have had tubes in since October last year and still we were failing. We go for the hearing test....back to the ENT....then so on and so on and so on. It has been kind of crazy actually.

This week we finally had a plan developed. Get his ears cleaned and then do a test ASAP so the wax doesn't have a chance to build up. It seemed to work. So Tuesday we drove an hour each way to get Wysdom's ear's cleaned. Fun...NOT. Then today we had the hearing test. Okay all was not perfect with the test. They stick this little thing in his ear and measure the output. The output is still not where it should be. It is suggesting fluid or that the tubes are still somewhat clogged. They really can't say as Wysdom will not allow them to look to closely. MIGHTY BUT STRONG COMES TO MIND!!!.

So part of the test is questionable. However when we moved to the behaviour test he did quiet well and PASSED. He responded well. If you have never done this, it is when they put you in a booth with your child and have speakers making different levels of sound. When Wysdom respond appropriately by turning his head towards the noise...a toy claps or plays the drum. Wysdom turned his head and waved at the toy. So I am happy for the time being. It seems the hearing loss fluctuates due to fluid and not likely a permanent loss.

The audiologist was honest and said we will probably be back for more test with her in the future when language is supposed to develop and she said that we would be followed more closely then. As well we are to keep our already booked appointment for another test in October. So yes I can be happy, but this is an ongoing issue. Honestly I am already aware of that, but I still can be happy with a pass today. Yeah one for WYSDOM!! I am sure many of you have stories to share about your ENT/Tubes or lack of tubes that you could share too.

T21 Travelling Afghan Pics

2010-07-26T23:27:00.026-04:00

Guess what we got?

Last week was our scheduled week of no appointments. We had no idea what we were going to do for this week. Usually we are busy with appointment, however one of our therapist said that we should just book a week of "NO APPOINTMENTS". So we did. Then on Friday just before the week started we were blessed with a very special package in the mail. One that we had signed up for a while ago. It was amazing. We were spending a week to ourselves and we got the famous "T21 Travelling Afghan" for a week. Let's just say this was a very good week.

For those of you that have never heard of the Travelling Afghan I urge you to go check it out. It is an amazing project that connects so many families with children with Down Syndrome. We were truly honored to have the afghan in our home knowing that it has been a part of so many other children's lives and families lives. You can feel the energy, the positiveness from it as soon as it arrives at your doorstep. In the journal that accompanies it you can read about all of the other families that have shared in the journey and see cute little photo's of the children along the way. What was especially cool was seeing photo's of other mom's that I know from the DS Blogging Community. Since I live in Canada and may never get over to where they live in the US, it made me feel a lot closer to everyone.

Wysdom and his big sister loved it. We had to keep it under high supervision due to Wysdoms two front teeth. They are very very sharp.( I will have to take a close up shot). They can slice a blanket in seconds and this is one of his favourite things to do. So he could never have it unsupervised or in his grasp for too long. Other than that it went everywhere with us:

A beer and rib festival
Water Park
Animal Park
Marine Land, Niagara Falls
Jazz Festival
and some late night walks and car rides.

So after our week off it goes. We were sad to see it go, but so so HAPPY to be a part of the journey. Here are some of our pics with the afghan. A big thanks to CJ for this amazing project...It made our week very special!!

First night at the beer and rib fest

Trying to take a pic at the carnival and jump out of the way of people

Keeping my babies warm on the way home from Niagara Falls.

Conversation about Baby Signing Time

2010-07-25T12:35:00.004-04:00

Okay this is so cute. Julian and I overheard Wysdom and Blyss having a conversation together. It happens to be about Baby Signing Time. Blyss and Wysdom have a great time together everyday, however this was extra special. Blyss was putting in her DVD of Franklin I believe and Wysdom wanted to watch Baby Signing Time. We know this because he calls it " Gunk Gunk Gunk". So picture this. Blyss is putting in the DVD and Wysdom starts saying "Gunk Gunk Gunk". Blyss then responds " No I don't want Gunk, Gunk, Gunk". Wysdom repeats his efforts to get the DVD on by saying " Gunk, Gunk, Gunk". Blyss then responds "No Wysdom, I don't want Gunk, Gunk Gunk. I have done all the learning from Gunk Gunk Gunk" She means that she has learned all of the signs already. And so the conversation goes on and on for a few minutes while they try to figure out what to watch. Julian and I just stand by and listen to the beauty of this moment. So so darn cute. Love it!!!

Please Forgive Me...

2010-07-18T22:44:00.001-04:00

I have been absent in the blog world. The truth is this and this is the honest truth. I am lucky if I can get a shower these days, let alone blog. In the last two weeks there has been a birth in the family(not me), a g tube infection, a birthday for Blyss, a handful or more of medical appointments for Wysdom and lots of family stuff that I can't quite get into that has taken up a heap of time. So you must forgive me for not keeping you up to date or checking in on your blogs. Everyday I have the intention to blog...but sleep seems to be the priority.

Wysdom is now on his 6th g tube infection. We are dealing with it as this has been our norm for a bit. We were kind of thrown off guard because he was doing so well. We were taken back and a little surprised. Since being on the blended diet, Wysdom has been doing really well. He has become so active and wants to slide or attempt a crawling motion. Normally we try to avoid this type of activity(due to his g tube). However he just kept rolling over. In a way it is great...I mean who wouldn't want to have their little one learn to crawl and do lots of physical therapy type of moves. But the g tube is not loving it and proved it with a nasty mess of an infection.

On a good note Wysdom is doing really well orally. He is eating now more than he ever has. Two weeks ago for whatever reason I started to count how many spoons of food he ate. We used to do this in the start of oral motor therapy, but then I found it set us up for a disappointment so we stopped. However last week when we just randomly tried to see how much he would eat....HE SHOCKED US!!! He ate 50 spoons of the blended food= about 100mls. For the last week or so we have tried to feed him at each feed and he is doing amazingly well. He has eaten 150mls at one sitting. So we have been able to not use the tube for a feed or two in a row. It is great to see him doing so well. It is still quite random and we haven't formulated a strategic plan....but everyone must know that we would love to move away from the g tube eventually.

Crawling and standing need a lot of work still. Due to the g tube we have made the tummy time off limits basically for the last 6 months. So he really doesn't have the same opportunity to use his muscles. We are trying a stander and doing the rock on hands and knees but we need a LOT....of work here.

Mmmm...let me see what else? We have been blessed not to have any reflux for the last little bit and therefore we have been able to do more fun things like swings and more outdoor activities.

At our last eye appointment we were told to switch our patching of just the left eye to both eyes. This is a good thing. Wysdom is using both of his eyes now and alternating from one to the other. So we have another appointment in a couple of months to see if he will be a candidate for surgery. Right now we patch for 45 minutes once a day and alternate eyes.(or at least this is what we should be doing-Wysdom hates the patch)

Hearing is still in question. We have had a hearing test recently and he failed the test. He did respond to some of the behavioural test but the response in his ears when tested showed that the tubes were not working. So we went to the ENT and the new plan is to try to clean his ears out and take some wax out and then in the next day go for a hearing test. This will give us the most accurate test results as the wax should not be a factor. In my heart I totally believe that he can hear. I am not saying 100 percent, but he can hear. He responds to sounds, songs and actions.

I think that is about it for now. I really truly have been missing you all and blogging, but it just has been really hard to get the time. I should be blogging a bit more as we have a week of no appointments coming up and plan to do some fun outings. We also got the Travelling Afghan this week so this should be a lot of fun taking it with us everywhere.

Oh yes I plan on sharing that I have been on a RAW challenge for the last month that I want to share about too. Anyways that is it for now..hope to catch up on all your blogs soon.

You won't believe what he said !!!!

2010-06-26T22:03:00.003-04:00

I just have to share because I am so excited and proud. Just a few minutes ago Wysdom amazed us. He said "I Love You". I say this to him all the time in the hopes that he would pick it up. Luckily, Julian and I were both there so we know that we both heard it. And if we weren't blown away and overjoyed enough...he said it again. Wow, we are so blessed. He sure knows how to melt a mamma's heart.(not like it wasn't melted already though).

Updates Part 1 of 3: Blended Diet and New Teeth

2010-06-25T17:20:00.011-04:00

Sorry for not posting that often. Things are crazy. Life is such a journey and we seem to be on a couple of waves right now and just hanging on.( Wysdom is good though, it's more family things) Things in the family are pretty busy. My sister is pregnant and due to have a baby any day now, my father ill and my grandmother needs help to. So any spare time is spent pretty quickly. As well I have a different sleeping pattern due to Wysdom. I have kind of lost my wild hours of staying up all night. Yeah for me, I get some sleep... but not so good for the blogging time. 1-3am was my prime time to blog....

I have so many updates to tell you about that I will do it in parts. This week alone we had around 5 appointments and the next two weeks are the same. We went to physio, the ENT, had a hearing test and saw and infant development specialist to name the big ones. However I think the best update is that things are going really well on the blended diet. Wysdom has been on a blended diet for about a month right now. No formula for a month and it has been amazing. We make his own food at home in our Vitamix.I can barely describe the differences because they are so huge. Wysdom is now more than likely eating better than all of us in the entire house. Albeit it is through the tube...but it is better than his Nutren formula. On a given day he is eating things like hemp seeds, flax oil, squash, broccoli, kale, chicken or beef. He has also had molasses, quinoa and many other new foods. He seems to be tolerating everything very well. He rarely is constipated and has maybe thrown up 2 times since we started. Our ND says he looks amazing and is so much more alert and active. Let me tell you active he is...

The difference is so dramatic. He now has lots of hair, can be thrown up and can go on a swing. He seriously has never been on a swing for the first year and a half of his life. With no reflux now he is loving it. He is eating really well and our next step is to see if we can lower the volume of his food and do one entire feed orally.
Yes sometimes the blended food is green, brown, orange or purplish...but he still eats some of it by mouth with some baby cereal and the rest goes in the tube.

In the midst of all of this Wysdom is getting a lot of new teeth, three-five possibly. For sure three that we can see. He is fussing a bit here and there but nothing that doesn't calm down with a little homeopathic's, baby signing time, and occasional Tylenol. We are so thrilled that he is getting teeth.....however his are all different shapes. I honestly don't mind that they are not looking like conventional teeth. The problem is that the two front teeth are really sharp and more like daggers. He cuts his poor little tongue and now likes to keep his tongue up on the roof of his mouth. We are scheduled to go to the dentist at the end of the summer. That is the first appointment for this specialist. The one thing that they did mention is that children with heart conditions need antibiotics when they get dental work. Has anyone heard of this? We are going to be checking with our cardi. So it is great that they are coming in, but oh boy when he gets a hold of you it feels like a knife. I will have to see if I can catch a picture.

So that is the first part of the update. Next to come is info on our ENT and Hearing Test this week and our physio program. For now that's all the time I have. I have to go make some dinner.

Oh yes and on a personal note I am trying a raw food diet for myself this week. So far I am on day 3 of about 85% or more of raw food.I am (slowly working my way) through a raw food course via the Internet. I have plans to start a new foodie blog...right now it's empty though. I will keep you posted. Have a great weekend everyone

The Joy of the Blended Diet.

2010-06-21T00:29:00.009-04:00

It has been several weeks and the Blenderized diet seems to really be working for Wysdom. I totally don't want to talk about it too much and jinx it, but I want to also share what we are doing and the changes we have seen, just in case any of you out there are interested. In the last couple of weeks since we have switched from formula to real food we have seen DRAMATIC CHANGES and I mean DRAMATIC. Let me just say Wysdom has been on a swing for the first time in the last couple of weeks. That should give you an indication as to how bad his reflux has been in the past. Right now on the blended real food diet he has not thrown up much. Maybe about once or twice. No more mucus or suctioning from the nose or saline sprays. He is now sleeping mostly in his crib, where prior to he was unable to be in there for more than a few minutes. One of the greatest things was to see his dry skin dissapear and his hair grow like crazy in the last couple of weeks. We not only have the absecne of the reflux and constipation, but we have the bonus of him looking healthy. Wysdom is totally more energized and wanting to interact more. He want and is trying to learn more signs daily and showing us new things all the time. We believe this is a testiment to the blenderized diet and the fact that he must have been feeling not so hot before.

Wysdom is probably (actually he is) eating better than anyone in the family. On an average day we put things like a protein powder, kale, broccoli, blueberries, hemp seeds, quinoa, flax oil, fish oil, peas into our Vitamix Blender. You can see he is eating pretty good. The great news is that right now he is holding his own in the weight department and is at the 50th percentile. He did gain last week, so we were very happy. Right now we plan on continuing on the real food diet and hope to progress in the area of oral eating and drinking.

This week we are headed for a busy schedule and I am sure I will have lots of updates. We have a hearing test, and ENT appointment, physio and several other respite appointments. I will keep you posted.

He's into everything!!

2010-06-07T00:45:00.004-04:00

Wysdom is feeling pretty good I think. He is really getting into everything and causing lots of trouble(just kidding). He is in love with his g tube right now and there seems to be no way to hide it from him. I usually yell "Wysdom" when he is playing with the tube or trying to put it in his mouth and I have learned that he likes this reaction because he gets attention. So he is doing it all the time. I swear yesterday he did it about 10 times in a row. Several times successfully opening the tube and the contents all over his chair. I must hold the record for the amount of laundry I do.

Wysdom seems to really trying to communicate. He has always been a huge babbler and likes to make lots of noises and hold a conversation of babbling back and forth. He now is saying mama, dad, Dada, hi, maybe high chair and the start of big boy. He is also singing drink, more, up, and eat. He also understands where his toes are and wiggles them on demand. However I think his all time favorite is to open his own diaper when I ask him if he wants a bath. No, sorry his all time favorite is to PEE on me when I change his diaper and then laugh. Close second is dancing in his chair with Blyss while she performs to the Dancing Wii game. (Who knew that New Kid's on the Block would make a come back)

Although Wysdom is keeping me extra busy, I can't not lie. I love it!!! I love his new found energy. Just love it!!!

There is always drama

2010-06-03T16:47:00.007-04:00

I have learned that there can always be some drama when you are trying to advocate for your child and there is someone on the other end who wants to deny you services. Last couple of weeks we have been dealing with some major reflux and sleep apnea. Do you think we could get a sleep study referral. I will not recount all that we went through because I honestly don't have the energy to go back to the anger that I felt. It can be so draining.

Wysdom always has had some apnea in my opinion. For sure he has had reflux and horrible reflux at times that entails throwing up and gagging more than 5 plus times a day. We have never really counted the full amount...on those days it is just to crazy(I am afraid to know the real number, it could be double digits on some days). So a couple of weeks ago(before we started the blenderized diet)Wysdom had another crazy bout where we have to put him on pedialyte. So after this I was bent on getting some further appointments. I know enough from all of you mom's out there that apnea and reflux can lead to permanent damage to the lungs and heart. So I thought I could call up our doctor and as for a referral. I could never have been more wrong.

Long story short, after fighting, arguing and calling around and doing some detective work so to speak. We got in for some preliminary appointments. Wysdom was seen last week and had a neck xray to rule out and obstruction and a referral to our ENT for a sleep study. As well as an EKG to rule out any damage to the heart from the apnea. The crazy thing is this and it's crazy. By the time we had gone through all the drama and argued for days to get an appointment, we had already found our own partial solution. To remove formula from his diet!!!! So NOW we have a very different child on our hands. He is sleeping better and refluxing less. So now we have many appointments for the future to deal with but for now we are rejoicing that the apnea and reflux have calmed down enough that I can go to bed before 3 am and that he can sleep in a bed a little and not just in a bouncy chair.

So in realty it is that the drama has pushed us to take things into our own hands and not depend solely on others for our son's well being. It is the drama that caused us to move to a Blenderized diet of real food that we feed Wysdom via the g tube. It is the drama that has lead us to some real answers. So as much as I hate the drama. .it helped us this time.

His x ray and urine sample came back good. Next we go to the ENT at the end of the month and go from there!!!

It's our 1 year HEART Anniversary.

2010-05-27T12:21:00.011-04:00

Yup can you believe it. It is our one year HEART Anniversary. One year ago today Wysdom had open heart surgery for his AVSD. We can not believe that it has been a year. So many things have happened since then. I didn't have a blog at the time of Wysdom's surgery. I can definitely say that Wysdom's surgery experience was the seed that started my blogging. At that time I had no idea of the DS blogging community. Instead I created a care page for Wysdom and journaling about our three week and a half week journey. It was a highly stressful time for us. Wysdom was in Toronto and Blyss stayed with my mom for part of the time at home and part of the time she joined us up at the hospital. To be honest I can't quite put myself back to those days. They seem so hard and unreal to me now. I think you just put yourself in a different mindset and prepare for the battle so to speak. You use all your energy and strength to get through it. For those of you that followed our care pages or followed us on the DS BC boards will remember that this was a really challenging time for us. We had many complications that included his chest being opened up for a second time, problems stabilizing his blood pressure, a huge scar on his forehead(that he still has) from a cpap machine and human error as well as pneumonia and several bacteria infections that originated from the central line. Mmmm let me see, was that it? I think that was it.

Even through all of the heartache and pain that Wysdom went through,we know that we were also truly blessed. We were surrounded by family and friends that supported us and prayed for Wysdom and helped keep our spirits up.(which was hard at times). My family came down to visit and support us and my mom watched Blyss so that we didn't have to worry about her in the hospital. Julian's family supported us with food, company and frequent hospital visits. They were often at our room in Ronald McDonald's feeding us and giving us support. My online supporters listen to my rants and progress reports and lifted us up with comment and poems. For all of this we are greatly appreciative.

I was deeply affected by parents that I met going through similar and different struggles that become our hospital friends. I will never forget two families in particular. Both lost their children while we were there. One from a heart condition and one from cancer. There struggles and faces are embedded in my mind and heart.

We are so proud of Wysdom and today we are really just celebrating that he is here with us and how lucky we are to have him and live in a society where the have the medical knowledge and the skills to repair his heart. His heart is still not perfect and may require more surgery..but right now we don't know and are just so thankful for where we are. We love you Wysdom.

PS. Here is a link to an older post on What I learned from Heart Surgery and also a link to our care pages if anyone wanted to see them. http://4wysdom.blogspot.com/2009/07/our-heart-journey-things-i-learned.html
I can't believe it is still there. My word and journals from a year ago. I just reread them and it is so hard to read. Also I can read all the comments from our supporters. Wow! We really did have a crazy ride.!!!

Children are sick..but good news

2010-05-23T15:32:00.007-04:00

Well the kiddo's have been sick for the last three days. It started on Friday with Blyss being tired and lounging around. Then she felt warm. Friday was an already crazy day with me taking my dad to an appointment and several in home appointments for me. While our last therapist was here and working with Wysdom, Blyss threw up all over herself and the couch. The therapist was like " okay I am going to go now". Crazy day.

We tried to keep them apart but then Wysdom has started coughing and throwing up is fully congested. He also started to feel warm. We had to cut all feeds and do the Pedialyte thing again. We know this protocol well and know when to do it. He just starts coughing and is unable to keep his food down and the reflux goes nuts. Then a yellow bright fluid emerges through the tube. So we did his Pedialyte for the night. When this all happened we were starting off on our blenderized diet that I mentioned in the last post. So when we went to start him back on nutren and it didn't work....we just switched over to all blended foods via the tube. This cold has been a blessing in disguise in a way(not that I would ever welcome a cold). It has allowed us to stop all formula because he wasn't tolerating it and try the blended diet. He is tolerating it very well and there is SOOOOOOOOO much less mucus and reflux. I don't even think he has thrown up in the last 24 hours. We are kind of winging it and it is a little stressful as I like to plan and be prepared. So even though he is sick, we may have solved a problem and learned more than we have about Wysdom's digestion and reflux than we ever have.

It has been so crazy I have not even been able to tell you all my drama about trying to get appointments. Anyways I will fill ya in later

Blenderized Diet

2010-05-20T02:22:00.013-04:00

Well we did it! Reflux has pushed us over the edge the last month or so. So today we got fed up with Wysdom gagging, throwing up, blowing bubbles out of his nose and being totally unhappy after or around his feeds. So we did it. We purchased a Vitamix and fed Wysdom real food via his g tube. It's called the blenderized diet.

We have been researching this and talking about it for a while. We even pitched it to our dietitian and our pediatrician last week and provided them with a package or information. They agreed that we could try it if we were followed by a dietitian. However when push came to shove I have been on the fence as of late. Don't get me wrong I believe in holistic food and nutrition very strongly, but when it comes to Wysdom I have always been a little apprehensive due to his complex medical history. I never want to put him in any harm. So today Julian gave me the little push to do it. Really we were both so tired of Wysdom's congestion and gagging. So I made the food in our new Vitamix. It's a high speed blender like no other. It's cost more than your average blender I am not going to lie, but it can blend any food into a smooth texture or liquid.It is more than a regular blender. Today he had butternut squash, blueberries, flax oil and a rice protein powder with vitamins. After mixing it it turned blue due to all of the blueberries...and I wasn't so sure I wanted to do it. Julian stepped it up and followed through. Guess what? Wysdom was fine. Really I don't know what I thought would happen. It went so well that we did the following feed of blended food instead of formula.

In order to do this right we have a lot more planning of meals and organization. (which is really hard when you are so busy) However we are going to try to do a blenderized feed or two everyday in hopes of reducing the reflux-/mucus/congestion and constipation cycle that we are in. (Trust me it's not fun). We are also hoping that this will help Wysdom get used to food. We hope that he will digest this food quicker and also get used to burping up real food and recognizing the taste. So wish us luck on our new exciting journey.

P.S. Big thanks to the blenderized diet yahoo group and a very special dietitian who got us started.

Medication change up.

2010-05-15T23:18:00.015-04:00

Oh gosh I remember when I first came home from the hospital with Wysdom and how overwhelmed I felt with the list of medications to give him. We had this weird iv sodium bottle that we had to use. I remember they showed that to me about 10 minutes before we left the hospital and the nurse could not even get it right. Oh yes and we also had the ng to contend with. Wow how times have changed. Medication don't seem so hard to do now. Yes changes still take a day or two to get used to, but nothing feels like that first couple of days right out of the hospital. Do you remember those?

Well this week we went to see Wysdom's Pediatrician. We have been having a terrible time with reflux for the last month. We are not sure what has triggered it off again...but it is back. Maybe teething? Maybe constipation? Or something else. So we are changing a few things again in hopes that it calms down. We will continue on our motility med's to speed up digestion and just increase the dose to meet Wysdom's requirements. Then stop the Zantac and instead we are going to try Prevacid( I know many of you mom's mention this one). Next...stop the lactolose because it causes to much gas and switch to PEG. Oh yes and bump his feeds up by 20mls too. Lastly, the one that we are really excited about is adding in a blended diet through the tube. Our pedi approved for us to try the blenderized diet as long as we are followed by our dietician. We are really looking forward to it, but we are not starting that until we get all the other changes down pat. We may have to experiment with the PEG and the dosages a little as we have had several messy diapers and poop up to Wysdom's arm pits. Ha. Really. I am not joking at all.!!!

So with all of these changes we are hoping less constipation, less reflux and thus less congestion. It really makes the day hard when Wysdom can't breath through his nose and is gagging every minute. Try bringing him to a baby group like that. Everyone thinks he is sick. I have to declare that he is healthy as soon as I walk in the room and explain the that it's just reflux!!

Anyways if anyone is using PEG and Prevacid I would love to hear how you like it or not and especially how you are dosing the PEG. Wysdom is 21 pounds and a bit and we are giving him 7 grams which maybe a little much. I guess only time will tell.

Happy Mother's Day

2010-05-09T11:45:00.002-04:00

Just wanted to wish all of my friends out there a Happy Mother's Day. Hope you have a great day with your family!!!

Eye patch in the tub??

2010-05-04T23:28:00.003-04:00

This was my question to Wysdom today. Do you want to wear your eye patch while your in the tub?? Mmmm...probably not. Okay so that is really not going to work. However while making dinner I actually thought about it for a few minutes. Let's just say that we were pretty busy today. Wysdom had a Baby Group at 9:30am -11:15am. We then did some errands and came home for lunch where we met my Aunt who helped me out by planting some flowers in my backyard. Then off to Blyss's activity group at 2-3pm. Then off to see my dad, mow the lawn for him and then back home. So by the time I got home I had to do dinner, give the children a bath, patch Wysdom's eye for an hour or two and also get him into his stander for a little bit. So I thought it was a really good idea to try and double up on things. Julian and I had a few laughs at the thought of that endeavour.

So yes the patch may not work in the tub...but hey it may work on the drive to a group or while he is in the stander. A little strange but it may work. Wysdom will let me know if he likes it or not...trust me. So in the grand scheme of things we accomplished a lot today. Not everything got done and I am learning that is okay(or at least trying to). We had some fun, socialized and had a little therapy. Check Check and Check.!

Finally some pics..Handsome Boy!!

2010-05-02T02:15:00.005-04:00

Forgive me as I have not been keeping up my blog as good as I would like. Still trying to get back into the swing of things and always seem to be busy. Right now it's 3 am and I am monitoring Wysdom's breathing (congestion), so I thought I might as well be productive while I watch Wysdom.

I love these new pics of Wysdom and Blyss. It really shares their special bond and also how big Wysdom is. ENJOY!!

I have many more updates to share that will come in the future. Here is a quick previous. We are enjoying some new baby groups and music therapy. We continue to work on eye patching, oral feeding program from Talk Tools and trying to develop leg strength. I am sure there is more but those are the biggies. We are really busy....But having a blast with Wysdom and Blyss these days. I am sure one day they will form their own little music group...they spend most of their time dancing and swaying to music. Promise to share more soon!!

So sad!!!

2010-04-25T23:28:00.003-04:00

I am at a total loss for words. I have been absent from blogging for a couple of weeks. Tonight I just decided to pop into the Down Syndrome blogging community and heard the most devastating news. One of my fellow bloggers eight year old daughter Carly passed away. This is such a shock and is quiet devastating. Many,many times I have been comforted and inspired by Carly's mom as she offered me support and advice and shared her life with me. I am truly heartbroken for her family. I have come to learn after the loss of my mom a couple of months ago and now after Carly's death that life is so fragile, so precious and so unpredictable. Please join me in sending prayers and thoughts to their family at this time.

The Echo Results Are In....

2010-04-08T23:00:00.006-04:00

We met with our cardiologist today to get the results of an echo that we had done about a month ago. I will not keep you in suspense. Can I just say how nervous I was in the meeting. I didn't feel nervous before the meeting. But as soon as the cardiologist started to talk. I started to feel anxious and felt myself breathing faster. I felt like what he was saying was right out of Charlie Brown. I couldn't hear clearly for a few seconds. The sound was all distorted and blurry.

The results are good.
Not amazing. But good.
Amazing would be "your son looks great and we don't have to see you again".
We did not get that.
What we got was a solid good for now.

What that means is this that there is some regurgitation or leakage on the left side of the heart and that is minimal or mild(Yeah).And yes this is common to have some mild leakage. However and yes there is a however. There is some leakage on the right side and also some stenosis or narrowing. (okay, so what does that mean?) It means that this is something that we have to watch and monitor. They don't know what will happen. Right now the good part is that Wysdom doesn't have to go in for another 6 months or so. Then after that check up we will do an echo in a years time if all looks good. At that time they will reassess if any medications or surgery is needed. Right now his heart rate is good and therefore his heart is not working extra hard. They are just not sure what will happen as he grows over the year or years. If this same amount of leakage that is on the right now was on the left side of the heart we would have to worry now. However because it is on the right it gives us some time. Let me just say I was so out of it that I jumped in and said to the cardiologist " so what he needs surgery in a year??????!!! He was like "no what I said is that he needs an echo in a year.

So yes I am very happy. However I am not going to lie. I am a little apprehension for the future. I wonder if this is common feeling with other heart mamma's out there. I left feeling good that we have another year or so but I also have this little whisper in the back of my head. Anyways I am sure once I get back into the routine of the next day or so that I will forget about the worry for now and just continue enjoy and love Wysdom. (And Blyss)

Next on our agenda is a MMR shot for Wysdom in the morning, a physical for me. Next on our agenda is to check out why Wysdom had a bad hearing test result earlier in the week. We need to plan to see an ENT again to see if this little guys tubes are still in. Anyways that's something to do next week.............. :) Now off to relax and watch some TV.:)

More than surviving....we're thriving

2010-04-05T22:01:00.003-04:00

Okay I don't want to jinx anything, but things have been going pretty well for Wysdom. He has joined his first baby group. I know it's late but this is the first time that he hasn't had any pressing medical issues. We still have many issues and things to do however nothing that prevents us from a little FUN. So Tuesday's we head off to Kid's Ability and join several other moms for some songs, books and puppets and toys. It has only been two weeks, but Wysdom loves it!! This Friday he will also join a music therapy group which we are really excited about.

Physical therapy has been a challenge but we are reaping some of the hard work. Wysdom despite all of his medical issues is continuing to do well. He has now mastered sitting-he did this about a month and half ago. We are really proud of him for this achievement. Can you believe we were once told that they were unsure if he would be able to sit. Although he does not go on his tummy now since the g tube, he has still developed strong muscles in some areas of his body. We are now working on crawling or rocking on all fours (with tummy of the ground). Last week we tried standing for the first time too. The therapist used an apparatus called the "stander". Okay at first I was a little afraid and skeptical. They had this old piece of equipment that look quiet torturous. However it worked out really well and allowed him to start using more of his leg muscles. We are going to focus on his standing at home now. We are so excited to move forward with the next goal and we can tell Wysdom is too.

Somehow withing the last month or so we have also found out the Wysdom is more of a social butterfly than a shy little guy. He has blossomed and is open to so many more people. He is laughing and clapping and spreading lost of joy. One of is favorite things now is to take a car ride. We can see a "Road Trip" in the near future.

We are having a lot of fun and just wanted to share some of the good stuff that happens too. Yes we still are busy with cardiology appointments, eye patching, and feeding issues, but somehow things seem to be progressing.

We have had one big feeding assessment done about 2 weeks ago by Sara from Talk Tools that we are grateful for because now we have a plan for Wysdom's feeding and speech issues. As well we have some big appointments coming up this week too. Our big cardiology appointment is on Thursday and we are going to our first Down Syndrome Clinic in the morning. So yes it is still really busy...but we are more than surviving!

Happy Easter

2010-04-05T10:26:00.003-04:00

Hi Everyone. Just wanted to wish everyone a Happy Easter. We are having a good time. Hopefully everyone had lots of fun decorating eggs, doing Easter egg hunts and spending time with your family. We have lots of updates to post about. I will update later in the week all of the great things that Wysdom has been up too. We also have one very important appointment later in the week too. So there is lots to talk about...but so little time:)But now I am off to our third Easter Egg Hunt.

Have a great day everyone!!!

We are still here.

2010-03-25T23:30:00.003-04:00

Yes we are still here. Please forgive me I have kind of lost my drive for blogging. Wysdom is doing well. Since the last time I have been here we have seen a new boy arise. He now demands for attention. Anyone who knows Wysdom, know that he is fun loving and full of smiles. However low and behold we have seen a new side of this little man. He has a temper. He has learned to demand what he wants when he wants it. It started by taking a toy away from him when he was apparently not done with it. We are thrilled with his new personality... but boy he is keeping us on our toes.

Medically speaking all is fairly good. We have somehow kept things busy around here but good. Wysdom is still teething so everyday is new and exciting. Believe it or now Wysdom has started his first "baby time group" Yah!!! We have been trying to join this group for the last 3 months. Seriously, that is no joke. We had to keep canceling due to his previous issues.( I don't even want to say the word...so if you are interested in what I am trying to avoid saying....see previous posts). Can I just say that Wysdom behaved himself so well and had a great time. He so deserves some fun and time to hang out with other little ones.

Yes we have been busy. Here a few updates. Today he went to see an ND for the first time. He also got switched into a new car seat that he is loving. He sits in it and looks around and claps away. He got a new formula. He also has two more months to try patching his eye before they consider doing eye surgery( I will have to share that story later). We went to visit his plastic surgeon for his forehead. We all got the stomach flu for a few days. I think that is most of it in a nutshell. We don't get our echo results until the 6ths, so that will be the next big thing.

Friday we have a big day ahead of us. We are meeting with a feeding specialist from the United States that is in Canada for a week and we are hoping for some good support with Wysdom's feeding issues.

Anyways I just wanted to give a quick update and let everyone know that we are okay. I am going to try to get back into the swing of things and be on here more often!!!!

Sedated Echo and Crossed Fingers...and Toes

2010-03-09T04:43:00.005-05:00

Today Wysdom had a sedated echo. I can't believe how time has flown by. In a couple of months it will be a year since his heart surgery. There was a leaky valve after his OHS so they are just doing a routine follow up.

Today I spent the time with Blyss while Julian stayed with Wysdom. It actually started the other way around but Wysdom was not having it. Well to be honest, mommy wasn't handling it. As soon as we checked in a student put a bracelet on his arm and for whatever reason(probably because he knew he was at the hospital) He started crying and freaking out. So he was in no mood as we entered the sedation area. It was quiet until we entered and Wysdom continued to scream and I could not for the life of me get him to calm down. Luckily for me after about 15 minutes or so, Julian must have figured this would have happened. Soon enough there was the secretary by my side letting me know that my husband had returned back to the front desk and wanted to see if I needed him to switch(as in I hang out with Blyss and he would stay with Wysdom). I gave her a big YUP, PERFECT TIMING!!!

Julian has a way with Wysdom and I knew that he would be able to calm him down better than me. Since I had driven 2 hours to get to the hospital and was a tad nervous I felt this was a good choice. At medical appointments I feel Julian is the better one in calming Wysdom down sometimes. There are times when my anxiety about the appointment makes me a little nervous, which I am sure Wysdom can feel.

So it all worked out in the end. Blyss had a blast at the hospital. She was able to visit 2 play areas, go to a story time session, pet a huge Saint Bernard and do lots of other fun activities. Wysdom calmed down and the echo was done and they were able to not go near the infected g tube area. So all in all a good day. Now we just wait for the results. We are keeping our fingers crossed and hoping and praying for good news.

What can I say... Some Good and Some UGH!!

2010-03-04T23:40:00.008-05:00

Where have we been you ask? Well mommy has been chilling for two weeks glued and I mean glued to the tv watching the Winter Olympics. Of course they were here in Canada, but also they took my mind off things and helped me relax and be somewhere else for a bit. Oh that was such good timing for me to have a distraction.

Time never stops for Wysdom though. Before I get into what has been happening on this end. I must just say that something happened to Wysdom around the time of my mom's funeral. He normally does not like crowds or a lot of new people. He was however so amazingly calm and relaxed with the crowd of new people.(So was Blyss) He sat quietly(well almost..just a few babbles) in the service. I had an escape exit all planned out..but he was good. Afterwards he was good and also at my parents house with constant people he seemed to like it. He never stops amazing us. So many people who know him commented on how well he was doing. Over the next couple of days a few family members heard him say Nana. He has never said that and never has since that day. Amazing.

Now let me get to the updates. Well about 2 days after the funeral things started to get busy again. We had a appointment that I had to keep, unless I wanted to wait 4 months for another date. So we got ready to go to the hospital the night before. We were kind of looking forward to the appointment because it was with a new feeding team that included a GI doc, a dietitian and an OT. Yes we have our own feeding team locally, but this team would look at his feeding or lack there of and give us suggestions and let us know if he needed a swallow study. Low and behold the night before the big appointment...we saw something familiar. Unwanted... But Familiar. Yes a start of another G tube infection. So we called the Pediatric Clinic and made the trek to the hospital for 9am the next morning. The surgeon was in surgery so we were able to go up to see the feeding team really quickly. Wysdom was a trooper he ate a few bites even though we know the tube area was bothering him. I guess the overall outcome from the feeding team was pretty good. We got rid of the 4am feed and we also were not stopped from feeding him oral. So his swallowing was okay. He did good. We still have to find a way to get him to drink, but he likes a small amount of solids so that is very good. On the g tube end though we had to watch him go through another painful cleaning of the area and a swab. This time we were put on a suspension of 2 new antibiotics which we were to do at full dose for the first week and a low dose for 3 weeks.

So in the meantime Wysdom got his first TOOTH!!! What an ordeal that was. I actually truly thought that he had RSV. He was so congested beyond belief. Cranky, coughing and vomiting all the time and I mean every feed. This was how he was when he got RSV at 2 months. We had to run the feeds at a slower pump rate of 90ml per hour and stop it quite often. If was horrible. We actually got our nurse to come in a check his lungs and also took him to an after hours clinic to see if he was okay. He did have a fever, but it was the congestion that freaked us out. Anyways... all is good and a little tooth has peeked out in the bottom at the front and let me tell you. It is SHARP!!!!!!!!!! Wysdom says.."Everyone beware...If I get a hold of you I will bite you and it will hurt"

He has also developed this fun habit at clapping when he hears music and also when he is told that he is a good boy or just when you tell him to clap. It is so adorable. I will have to get it on the camera when I can get a chance.

So now the teething crisis is over. For a couple of days we have had some tummy time and bumbo time. Wysdom has seriously not been on his tummy for months. He is very behind in his gross motor skill due to all of the g tube infections. However this week he surprised us and our therapist with his determination and strength. He is sitting up and rolling over a bit. He has managed to keep some of his strength. His arm strength is not great but his tummy muscles and trunk muscles are getting better.

After a few days of a regular routine.. we have hit another road block. Yup. Tonight we have noticed the FREAKING signs of a _______, _____, blank blank blank g tube infection!!!!!!!!! You get the picture. Ugh. I am going to demand a new tube or for them to send us to another hospital. This is crazy. This is the fourth one since October 31st. It is in the same spot and I am guessing the same internal infection that never goes away!!!

So in the morning we are of to the hospital. I will have to cancel his RSV shot for the second time that I had booked for Friday and more than likely cancel his sedated echo for the second time too. Needless to say that Stress is a word that I am all to familiar with.Today I brought out the lavender oil, the calming tea. It's pretty bad when your three year old knows mommy's favorite line. " I need a vacation":) I know things could be a lot worse, but I am just wanting my big guy to be able to crawl and play on the floor...Is that really to much to ask? I don't' think so!!!

Wysdom's smile is still strong and he even though he is in pain is still such a joyful spirit. Blyss is taking it all in stride and today even pulled out her own stethoscope and doctors binder like the nurse uses when she visits. What a pair I have here.

THANK YOU

2010-02-19T22:49:00.005-05:00

Thank you for everyone for your prayers and support during this difficult time. I am overwhelmed by the support and love from everyone. I could list names of people to thank, but I would be afraid that I would leave someone out. So again just a big thanks.

Here is a poem that I wrote for my mom at her funeral that I thought I would share with all of you.

A mother like no other

Lots of people say that they have a “great mother”
However we had a mother, “like no other”
A mother who loved with an open heart
A mother who sacrificed and worked hard for her children
A mother who laughed, danced and sang everyday
A mother who loved her grandchildren so much and proved it !
A mother who loved to garden and go on road trips to the beach every summer
A mother who fought for her children and made lots of sacrifices for them
A mother who’s spirit radiated and was felt by many
A mother who was often told that she was requested to be a “second mother” to all of our friends
A mother who had whip cream and food fights often and we have the pictures to prove it
A mother who loved endlessly,
A mother who cherished her grandchildren every day.
"A mother like no other" who will be missed greatly

*****************************************************************************

FYI

I shall be returning to the blogging world shortly with some updates on how Wysdom and Blyss are doing. So stay tuned as I try to get back into blogging.

Sad News: My mom lost her battle

2010-02-08T21:48:00.006-05:00

I have some sad news. My mom who was battling with pancreatic cancer passed away on Saturday. Her health declined very quickly early last week. Our family is devastated, especially her 8 grandchildren. She stayed at home and passed away in the comfort of her own house surrounded by family.

I was fortunate to see her very often and spend time with her daily. Both my sister and I were able to share some time with her that we will cherish every day.

Her funeral will be held on Wednesday. Thank you everyone for your prayers and support over the last couple of weeks. A special thanks to all of our family members that stayed with her and helped her through out her battle-you know who you are. We could not have done this with out you.

Rest in peace mom. We love you.

My hero's: Wysdom and Mom

2010-02-03T04:56:00.007-05:00

Can I just say that Wysdom is my HERO. He has been through a lot in the last month and a half but he just keeps on smiling and fighting his battles as they arrive. I am so proud of him today. We went to the hospital AGAIN( yes I know you must all be so sick of me telling you this) I will tell you because that is all I have to talk about as it is my reality right now. Anyways he had some g tube issues over the weekend and ended up getting some granulation tissue taken care of today. Taken care of sounds much better than burnt of with Silver Nitrate. He handled it like a champ. Oh yes he screamed and cried his head off. I knew this was going to be the case as one mother on the BBC had shared her story with this experience with me. After about five minutes he calmed down and gave us some big smiles and was playing like usual.

He is so strong and has gone through so much and continues to thrive. Even with all of the tube problems we just found out that he now weighs 21 pounds and change. He is growing and gaining weight at a good rate putting him at the 75% on the Down Syndrome Chart. So yes he is my HERO!

This week Wysdom has mastered puckering up and showing me that he can give me a kiss. Since I am part Polish, I say it to him in Polish and he just puckers up and plants one on me. Through all of the trial and tribulations we are having fun with him. We are well into our natural routine that I blogged about earlier. He is taking his probiotics and vitamins well. Really he should have been on this a long time ago, but for whatever reason I felt quite hesitant. I am guessing probably because he has had so many medical issues that I felt afraid but in reality I am sure it is the best for him.

Wysdom also performed on cue today too. We went to visit my mom, who is very ill and is just hanging on right now. She is a sleep for most of the day. However today she was able to see Wysdom smile and wave at her. He even tried to give her a kiss. This was a great joy to me to see her smiling and responding to him. I know that she loved coming to our house to play with him and loves him dearly. Anyways that is about all I can say as this is bringing me to tears.

So the plan is for Wysdom to heal from his g tube and get him back into his activities which he has been banned from for the last month or two. We actually banned him from going on his tummy as to let the tube heal. He still finds his own way once in a while. So hopefully this week he can be free to do whatever.

We are also having a meeting in the morning with our OT, PT and a vendor. We are hoping to find a sleeping arrangement for Wysdom. Something that is elevated but comfy so that he can have a better sleep. Right now he spends most of his time sleeping in his bouncy chair. His crib doesn't do the job. Even with it being elevated it doesn't seem to work for him. His playpen sometimes works if it is not around feeding time. So the poor little guy sleeps in his bouncy chair. So the vendor will be bringing some wedges and sleeping items. Wish us luck!

The plan for me is to spend what little time I have left with my mom. She is a fighter but this battle is a hard one that she is not winning. Everyday right now is such a gift of time. So please keep us in your prayers and thoughts through this difficult time. I also just wanted to send out some love to the several moms that have their little ones in the hospital right now from illness and also for heart surgery. My thoughts and prayers are with you too.

Thanks everyone for your prayers and wishes.

We're going natural

2010-01-27T22:18:00.004-05:00

Well we are going "natural" as in seeking natural alternatives to help us out with Wysdom. We had three appointments spread between Monday and Tuesday. Monday we spent the morning with Wysdom's pediatrician. He got all of his usual stuff done and then his round of RSV shots. He also got his g tube peeked at. Tuesday was a bit more packed. We drove out of town to see his ENT and later that same day at the same hospital saw his Pediatric Surgeon. Both appointments turned out to be very short and really did not provide any of the answers that we were looking for.

For the ENT appointment we were getting his ear tubes checked and also asking about what could be done about his poor sleeping patterns at night. We were basically told that nothing really could be done now. Wysdom was already agitated after the ear check so the ENT could not do much at the time. We told him our concerns with Wysdom's breathing and trouble sleeping. He said that really the only option would be surgery to remove the tonsils and adenoids and that is not our best option now as it is quite a hard surgery for little ones his age to go through. The other option was steroid's and he really doesn't believe they are all that effective and absorbed properly. So.....we are left to deal with his breathing issues on our own for now and if it continues to call back. We are guessing that it maybe sleep apnea and a combination of reflux. So we are going to look at the reflux issue and also have a meeting with our OT to look at alternative beds.

Second on our visit for the day was with the g tube DR. He looked at the tube and said he thought it looked good. I asked "At what point do you remove a g tube if there is continual infections?" He said that have rarely ever happened and that is not really an option. So "What can we do to prevent this?" He said to make sure that we don't allow the g tube to be pulled our caught on anything. "I don't allow it and we are very careful" was my reply. He also mentioned that it just could be Wysdom's flora on his skin and that he also may have a weakened immune system.

So here is where the natural part comes in. Julian and I talked and thought that yes maybe his immune system is low and he can't fight of these infections or heal properly. So we started him off on Probiotics and also a vitamin supplement. We are also going to try to get him off some of his pediasure feeds and move into real foods. Not sure how we are going to get there yet. He eats solids pretty well just in small amounts. So we will have to figure out how to make him hungry and lessen his pediasure intake so he can eat solids. All of you that have feeding issues know what I am talking about I am sure and you know that it is not that easy. However we must try. Overall the g tube is looking okay. I asked about using natural oils for the tube and the doctor said I could go ahead and try it. I just have to figure out what it would be. We are more than likely going to go to a ND for Wysdom to help us support him the best we can with the right products.

Not much else to report since this week has been taken up by medical appointments. I did manage to drop and drag Wysdom's favorite toy through the grease in the parking garage. All Julian and I can do is laugh. Poor little ducky!!We are living in a world of "organized chaos" right now and operate like a well oiled team of shift workers. He does his shift with the children while I sleep and vice versa. All in all we are making it work or our system is working for us. We sometimes struggle but we have the best two little motivators here with us.

We are so thankful for both Blyss and Wysdom. Wysdom graced us today with his swinging in his bouncy chair while clapping his hands to the tunes of Black Eyed Peas. Blyss on the other hand entertained her self using our new massage chair that we got for Christmas. When I came back from the kitchen she sat naked and crossed legged in a yoga pose in the massage chair. Let me just say I almost spit out my food. I had to contain my surprise and laughter. She told me she couldn't feel the massage with her clothes on. There is never a dull, boring moment over here:)

The Good, The Bad and The Ugly

2010-01-22T22:37:00.007-05:00

Thanks everyone for your comments. They keep me going!! Here are the updates from the last couple of days. There is some good news and not so good news. The good news is that my mom was discharged from the hospital this afternoon sometime. She is outta there!!! Yah and now at home and will have home care come and help her. She still has a tough road ahead but at least she is at home for now and no more procedures at this point.

The bad news is that I didn't get to see her today at all. Why you ask? Because we spent most of the day at the hospital( out of town one) with Wysdom. Last night we noticed that he was getting a puffy spot around his tube AGAIN!! It is in the exact same place which leads me to think that the first infection never truly went away at all. On Thursday we went back to the hospital and talked to another doctor. The g tube area looked fine from a quick glance. However if you touched it or moved around that area Wysdom freaked out. The doctor that we saw was great. He did order an ultrasound for Wysdom which was not fun at all. However he did believe me when I said I thought that there was an infection since Monday and finally gave us a prescription for an antibiotic.

Now for the Ugly. Well by early Friday morning we noticed it gathering into a boil or abscess again. We called our out of town hospital since they were the ones that put it in. We talked to another on call doctor and she was less than helpful. After taking to her, we quickly called her back in less than a couple of minutes and asked her if we should bring him to our local hospital instead. Can you believe that she had the nerve to tell Julian that we disturbed her from her sleep.!!! Julian handled that better than I would have. He said with all due respect how are we supposed to know if you are at the hospital or at home in bed. UGH!!! Anyways I was less than pleased. What's with the hospital's this week. So in the morning we went to Hamilton and they looked at it and immediately decided to cut it open again and drain it. They put some local freezing on it and after a 20 minute wait they went to drain it, however it had already torn open. My poor little man has to go through this again. They don't know why really. Either it's his skin flora or it's rubbing too much. They don't really know for sure. I am very frustrated and don't want him to go through this again. I told the nurse that I can't keep having this happen. He is missing all of his developmental activities like floor time and sitting. He can't do much because he is always healing. Julian and I are now under a bit of pressure we feel to find our own strategy for cleaning the tube and keeping infections away. They say that this is so RARE. Yah right. Not for us. We also feel we have to try to get Wysdom to feed orally as we don't want this tube anymore. This is definitely where I am asking for miracles in my life right now. This g tube is so time consuming right now and we still have eye, ENT, cardio and all other therapy appointments.

So if anyone uses anything really different to wash their g tubes or knows of anyone who does I would be interested. I am going to look into something natural to maybe put in the bath water or something. Who knows? I am not sure yet..but I can't have his tummy splitting open week after week and I can't go back to the NG. So that is where we are at. I know he is really strong and tough but enough is enough.

We got home around 3:00, I called my mom and then went right to bed. My house is a disaster and the food we are eating is not the greatest as we just can't keep up. Through it all though, Wysdom is STILL SMILING AND SPREADING LOVE. Poor Blyss, she has spent the whole week everyday...in the hospital too. She is going to need a special treat for being such a good girl.

My new motto for the week is "Miracles are welcome"

Can you say "Angry and Stressed Out"?

2010-01-21T02:00:00.011-05:00

Okay forgive me for I am going to vent.I am drained. I tired and I am not going to lie, I am ANGRY. Angry for so many reasons that I don't think I can list them all. The best way to put it is that I am ANGRY with the medical field. I am angry at how they can treat a human being. I am angry that I had to spend most of my day arguing and fighting for my mom and my son.

Who would have thought that things could get worse than they are? Not me. I thought that things should be looking up a bit. Let me just tell you this week has sucked. It is like I am in a constant boxing match and I continoulsy keep getting knocked down. I stand up and get knocked down. I get up and get another punch and down I go. You get the point. Who would have thought that I would have to bring my son in to the hospital to have his g tube looked at (again!!) and then have to run upstairs to my mom on another floor and deal with her being laid up in the hallway all night after being booted out of her room. This is just crazy.

So let me just recap a bit here. Just after I posted how well things were going with Wysdom we started to notice he was having some pain again with the g tube. We have called the hospital so many times that I am sure we are driving them crazy. He has pain, he's crying and no one really knows what to do. We are being cautios and watching for any sign of infection. Tuesday we had our nurse look at it. The g tube looks good but he still is in pain, so we are thinking that there maybe an infection inside again or that the last one never quite left. So the early part of the day was spent on the phone with doctors trying to decide if there is something wrong or not. So we headed into the hospital after talking to the oncall pediatrician at our local hospital. They loosened it and took x rays to see if it is still in the right placed. So far all is good. The one thing that they could not say is if there is an infection inside. From the outside it looks good...but something is not right on the inside is my guess. It's my mommy intuition.

Then after Wysdom was done we all went upstairs to see my mom who is having a procedure done today. She was admitted on Tuesday afternoon. Let me just say that it has not been a good experience. My sister and I left her at the hospital on Tuesday evening after we got my mom all settled in after intake. My sister got her a phone set up and a TV to pass the time. We unpacked a few of her things and then said our goodbyes. When I called this morning I learned from a patient that "the woman who was here yesterday got moved". No biggy, so I call the floor to get her new extension and find out if she is back from her procedure. Well they inform me that she is no longer in a room and is laying in the hallway!!!. What the >>>>! So I ask to speak to someone who then directs me to someone else and eventually to a Public Relations person. To make a long crappy story short she spent the whole night in the hallway with no phone and no easy access to a washroom. She was left unattended for several hours and we didn't get to talk to her before her surgery. The message that the nurse said she would deliver to my mom to let her know that I called and would be there soon never arrived to her. Can you imagine. To be going in for a procedure that you are already anxious about and then to be put in the hallway with the lights on all night and then not able to see or talk to your family in the morning. Oh how I complained and will complain again. There is much more that goes with this story as far as no food, no help, unsafely and negligent behaviour on behalf of some doctors. However I am sure you get the picture. Anyways in the end some things got sorted out and she finally got a bed a mere 12 hours later. Most of my anger comes from the fact that the procedure that they attempted today should have been done a month ago. I have no medical training but I know that, mmm but who will take responsibility for that?! No one!! Hopefully she is resting through the night and everything is going well.

So I am at home now feeding Wysdom and trying to recover from the last couple of days. I am praying and hoping that the morning will bring better news than today did. I am praying that there is nothing wrong with Wysdom's tube and that I don't have to make an out of town trip to another hospital in the morning and I am praying that my mom is recovering and will get out of the hospital asap. At the end of all this I have to let today's and previous days anger go. So here is what I still am grateful for. I am grateful that my mom made it through today and that the doctor that worked on her was very good. I am also grateful that my husband has been able to to watch Blyss and Wysdom when I take off to the hospital or visit my mom at home. I am grateful that I have wonderful Aunts who come running when I call for help. I am grateful that my husbands family comes down to help every weekend. I am grateful for Wysdom and Blyss. I am grateful that even though we had problems at the hospital that there is one to go to. I am grateful for mornings and fresh starts.

We have one noisy baby!

2010-01-19T03:14:00.003-05:00

Wysom has always been pretty vocal. However in the last week he has kicked it up a notch and is making lots of new sounds and babbling all the time. We are having so much fun with him and his noisy self. At times he can make such a loud noise that family members are totally in awe that the noise is coming from our little peanut. (Well actually not so little weighing in at almost 22 pounds). We of course are used to all of his noises, especially early in the morning. It does seem like Wysdom is trying to express himself more and mimic some of the things that we are saying.

I just have to say that we are having so much fun with him right now. He just seems to be thriving this last week. I think it could be also the fact that he is feeling better and has recovered(fingers crossed)from all of his g tube issues.

One thing that he loves doing is demanding for us to pick him up. He uses the sign with such force that you gotta know it's a demand "mommy pick me up now please"
Everyday I am truly in awe at how much joy and love he brings to our lives. It is just so amazing. We are so blessed to have two amazing children. One babbling boy and one Hannah Montana Rock Star.(more about that later)

Random Fun Photos

2010-01-13T03:07:00.019-05:00

Here are a few random and I mean random pictures. When I went to upload from my camera I realized that I really haven't taken a lot of pictures in the last couple of weeks. So here is it folks. (As well just to let you know Wysdom's g tube is doing much better-will post more later about this).

Wysdom in his X mas outfit which he wore for about 10 minutes! Too Hot!!

This is us trying to get Wysdom to keep his eye patch on. We thought we would distract him with the hat. Ah nope that didn't work. We are to have it on for 1-2 hours a day. We can make it to about 15 minutes. HE HATES IT!!

I love this shot. Blyss took it. Isn't she an awesome photographer?

Wysdom giving daddy some love before the bath.

Laughs at bath time!

My big girl. Cutie pie.

Trying to do yoga.

My mom at Christmas. Christmas is her birthday. She would probably not like me posting this....but you all need to see who you are praying for.

This weeks adventure.....

2010-01-09T22:41:00.010-05:00

As per usual we are crazy busy. A couple of months ago I couldn't imagine being any busier...but we are. Well this week consisted of diarrhea and a couple of call to the hospital on call pediatric surgeon for our big guy. Long story short we are still dealing with the g tube and the rip as well as him having diarrhea for a couple of days from the antibiotic and blood appearing in his g tube. We went to the hospital once since the last post and our Pedi looked at the tube and swabbed it for any other little "germs". Good news is now that it came back negative. Bad news is that we now have some skin growth or granulation tissue. Yes it has all been hard and I hate to see Wysdom cry. He is one tough boy. Right now I still like the g tube better than the ng, but it hasn't been the easiest either.

Wysdom has been a real trooper. He takes it like a big boy. He so wants to get into everything and play and all we are trying to do is keep him still so the g tube area can heal. We did have a nurse come in today and she said to let him do what he wants to do and we will see what happens in the morning. Of course Wysdom had to go full force. I can definitely say that Wysdom has learned some new tricks this week. Since we knew he was in pain, we never let him cry really. We picked him up and cuddled him and try to reposition him. Now that he is feeling a bit better, guess what we are seening? Crying and whining and then when we pick him up....you guessed it! A big smile and no more whines. He wants up all the time now. I just told Julian that we are in big trouble now!!! He is so catered too, especially because we don't want him to activate his strong reflux abilities and throw up everywhere.

This last couple of weeks he has become so much more vocal. Often people wonder who is making all that noise in the background when I am on the phone. Nope it's not Blyss, it's Wysdom. Blyss is handling this all in her own way. She has her own doll with it's own g tube and a doctors kit. She also is awesome at distracting her brother while he is getting things done to his tube that he may not like.

In general we are just staying on top of things. The house is a mess and meals, well let's just say they aren't the greatest these days. Any spare second that I get I try to head over to my moms. My sister and I have been trying to make her healthy food to eat to help get her strength up. We make juices( beet, carrot, celery to name a few). We are also looking into a lot and I mean a lot of alternative options for her care. So at night when I feed Wysdom I would normally blog, but now instead I focus on alternative cancer information. All I can say is that we take it one day at a time. We have my Aunts who are awesome and are helping out a lot with my mom's care. My mom is trying her hardest and so are we to do all that we can for her. When I do have a second to breath, I am totally overwhelmed some times. Thankfully, Julian has been awesome and so supportive. I usually leave him with Blyss and Wysdom for several hours a day. He definitely is letting me have more sleep and trying to keep me upbeat.

Thanks everyone again for your prayers and comments. I am always amazed and overjoyed at having such an awesome blogging community to be connected to and get support from. Even though I don't get on all of your blogs as much, I do think about all of you and miss blogging.

Well this week is going to be a crazy one. We have an:
appointment for the g tube, (out of town)
appointment for his forehead, (out of town)
appointment for his PT,
doctor appointment for mom,
feeding team appointment for Wysdom
and case management meeting for mom

Isn't it crazy how the brain works. I can remember all of the above appointments and dates and times all in my head, but can barely remember how old I am.(got it wrong today when someone asked at the bank). Mmmmm I think I just figured out why I can't remember my age:)

I will try to post some fun photo's soon.

Emergency trip to the hospital

2010-01-04T22:05:00.005-05:00

Yup emergency trip to the hospital but we are home now.

We never ever have a dull moment. For the last week Wysdom has been dealing with some tenderness around his g tube and a little discharge. Nothing gross, but something that caused him some mild discomfort. Last night I played with him and had him practice his sitting by putting him on the floor between my legs with his back against my tummy. He played like this for at least 30 minutes or more and maybe had a few seconds of discomfort. I really wasn't pushing him to do it or anything and he seemed to be having fun. What a mistake that was. When I went to change his diaper after, I couldn't believe my eye. There was a big pouch of skin puffed up around the g tube. It was all red and it looked so swollen. Julian and I immediately discussed our options. Go to our local hospital emergency? Not a good idea. Call the hospital where the g tube was put in and where most of our doctors are seemed to be our best option. We contacted the on call pediatric surgeon and explained the situation. The surgeon advised us to wait and come in the morning for 9am to see someone in the Pediatric Clinic as the emergency staff may not know as much about the g tube as the clinic. So after much talk and lots of tears on my part, that is what we decided to do. We almost went to emergency because I didn't want to wait because it looked awful. However Julian talked me into waiting.

In the morning we rushed off to the hospital. Once we got there the game plan was quickly made. They were going to freeze his skin around the g tube and then cut it open to let the puss that had gathered, out. LET ME JUST SAY THAT MY STOMACH TURNED. THIS IS NOT FOR THE WEAK. My poor little man. As if he needs more procedures done to him. I was pretty upset at this because the g tube infections like this are pretty rare. We are so careful with it and wash our hands and sterilize before we go near the tube. Keep in mind this is already our second issue with the g tube since October.Julian being the trooper that he is was nominated by ME to stay with Wysdom, while I entertained Blyss in the hospital for an hour and a half. I just didn't think that I could handle being there today when they cut his skin open. I know I have gone through worse (heart surgery), but just couldn't do it. So when I got back in Wysdom was doing the cry that you do when you are really upset and are trying to catch your breath. He is SUCH A FIGHTER AND TROOPER!! HIS SPIRIT CAN NOT BE BROKEN.

The good news in all of this is that we didn't have to be admitted to the hospital. I had nightmares of this. Also he didn't have to have the tube removed which was another fear of mine. The way it looked with the swelling was very lopsided so we thought it was a structural issue. I am also so thankful for the doctors and my husband too. We are at home now and Wysdom is doing okay. He is fussy and getting his doses of Tempera(oh how I have come to love tempera). Right now he is sleeping peacefully. If all goes well we will go back in a week for a check up. We were supposed to go to the same hospital tomorrow for an ENT appointment but since it is an hour away I cancelled and will rebook it when he is feeling better.

Last night I had to pull out the books that I used to support me when I was in the hospital for Wysdom's heart surgery.It just all is too much, everything happening all at once. I already had a meltdown at my mom's earlier in the day. So I took a peek at these books on spirituality and hard times and read those before bed. Here is a quote that got me through the night. "Sorrow looks back, worry looks around, faith looks up" Anonymous . I think I will start to read some of these books again everyday like I used to do many years ago and hope that they give me some strength.

My poor neglected blog

2010-01-02T04:01:00.003-05:00

My poor blog. I have neglected it and also all of my fellow bloggers. I haven't been able to catch up with everyone as of yet. Hope everyone had a Happy New Year!!

Things are really hectic and busy on this end. My sister and I are spending our free time visiting my mom and trying to make her healthy things to eat. She is not eating much so we are trying lot of things like fresh juices, soups and salads. In the last couple of days she has felt a bit better and had a little more energy. She seems a little more hopeful these last couple of days. It has been a whirlwind, but we are hanging on.

On the Wysdom front we are dealing with a g tube infection of some sort. Over the last week I thought he was teething, which he still probably is. He kept crying and putting his fingers in his mouth. Finally Julain and I figured out that something else was wrong. We saw a little red discharge on his g tube site. We ended up going to the hospital for a RSV shot this week. We asked them to check it out and they said it was fine. However the next day we could see more discharge and he was in a lot of pain.(Didn't help that Blyss fell on the g tube with her knee..ouch). Anyways we called another hospital the one where he got the g tube and our doctor is off until Monday, so the on call pedi faxed our pharmacy a prescription. So he is now on some meds for 10 days. We are really not sure what is going on and are going to try to see our doctor this week. Otherwise he is doing well and still packing on the pounds. We are switching his formula right now giving him half of his Good Start and adding a second stage formula that is being mixed in. We are hoping that this will help with his reflux and that the enticing vanilla flavour will encourage him to bottle. We are currently trying to bottle him and he is taking about 10mls which is pretty amazing since he didn't bottle for a year.

This week we start back into our routine of appointments with a hearing appointment, feeding team and hopefully a g tube appointment. Will keep you posted on how everything is going. Thanks for all the continued support for my mom. I may not get to post as often as I would like. Most of my time right now is being devoted to helping my mom and researching alternatives that can help support her. I am going to try to at least post once every week to keep you all informed on what Wysdom is up to. He is doing a lot of fun stuff like interacting really well with his sister and making some crazy noises and faces.

Christmas Update

2009-12-28T03:25:00.003-05:00

I know I have been neglecting my blog and blog friends. Things have been really busy and crazy. We had a pretty good Christmas considering all that is going on. We spent Christmas Eve's at my Aunt's house. Blyss had a ball and was showing off her speaking abilities. She was all over the place talking to everyone. Usually she is a little shy. It was probably the sugar in all of the cookies she ate. Christmas day we always go to my mom's for breakfast and spend most of the day there. This year was definitely one we wanted to share together. The children all had fun with one exception. Wysdom. He is teething and he was not happy all day or for the last couple of days, but who can blame him. He is normally so easy going that we just feel bad for him while he is in so much discomfort. Wysdom did get some great toys as did Blyss. Blyss is thrilled with all of her toys and just spending time with family. My mom was able to spend a good part of the morning and early afternoon with us. She surprised us with a Wii(great for stress relief by the way). She is always outdoing herself and thinking of others. We were thrilled and shocked of course. She enjoyed watching us play for a bit. I got lots of pictures that I will post soon. Thanks again for all of your thoughts and prayer's for our family and my mom.

Merry Christmas

2009-12-25T01:54:00.002-05:00

Thank you everyone for the prayers that you have sent for my mom-please keep them coming. I want to wish everyone a Merry Christmas! I hope everyone has a great Christmas filled with lots of love, family and friends. I am so blessed to have you all in my life and wish everyone the best for the holidays.

Keep us in your Prayers

2009-12-20T02:27:00.004-05:00

I need your prayer please!! Please pray for my family and keep us in your thoughts over the holidays. I can't really elaborate right now, but I would appreciate your thoughts and strength at this time.

This prayer request is not Wysdom related just in case you are wondering. Of course you can go ahead and pray for him to, but I just wanted to let you know that he is doing fine. He actually seems to be thriving right now. He is playing a lot more and interested in new things. He seems to be trying to communicate with babbling and occasionally says mama . Like last night when he was upset.Mama only comes out when he is mad so far, but hey I will take it. He also used the sign for up with such energy and force last night when he was upset. I wish I had it on video. It was like "Pick me up now, mama". I loved it.

This week he got a visit from the feeding team and we got to see his overall progress on growth. He is currently a big boy and weighing in at 20 pounds and change. He is at the 75% for weight and 50% for height on the down syndrome charts. He is also learning to try to bottle again and is giving it a good effort.

We have a couple of more appointments before the holiday's arrive. I have done most of my shopping this week in little spurts and am almost done. Blyss is very excited and I can't wait to see Wysdom open up a gift for the first time. We are still trying to see if we can raise some money over the holidays for Reece's Rainbow(see previous post). Things are a little crazy in our lives right now but we still want to try raise some funds,so I will keep you posted on that as well:)

In Urgent need of a family and donations

2009-12-17T04:45:00.019-05:00

Please Grab This Button!
URGENT PLEA!
Please read this and pass the information to as many people as you can. This little cutie is being transferred in a few months to an institution.

My husband and I donated money this week to Reece's Rainbow in the spirit of giving. Recee's Rainbow is an international adoption agency for children with Down syndrome. By raising money to offer adoption grants on waiting children, they in turn are able to give adoptive families the extra financial help they need to bring a child home and avoid them getting put into horrible institutions where they are basically left in their cribs for life, with little nutrition or care.

I am so happy we were able to do so. However I have been truly bothered as well. I have seen all of the children that are waiting for help and homes and it is heartbreaking.

I just happened to see another blogger post an urgent request for children that need our help asap and on her list was Ian. I have been touched by Ian# (y65w-2) . He is close to 4 years old and is African American and is in an orphanage in Russia.(Yes this is a rare case because of that) Truly, I am touched by all of the children but just happened to connect with his picture as he reminds me a little bit of what Wysdom could look like when he is that age. He could so easily fit in with our family if we were in a position to adopt. However we are not in a position to do so, however we thought that we could spread the word and try to raise funds for him.

So we contacted Reece's Rainbow this week. We had the idea in our head that we could try a little more over the months and gather some donations from family. Well when we contacted Reece's Rainbow I learned that Ian did have a family ready to take him but that fell through and now he is going to be transferred to an institution within the new year. They said it would be anything short of a miracle if funds could be raised for this little boy. So I am asking everyone who can to donate for Ian and to pass the word along. He doesn't have much time at all. We want to collect some money for him and hopefully inspire a family to adopt him. From talking to the staff and Ree's Rainbow, the only way an adoption may happen is if significant funds are raised ASAP and a family is found to secure him from being transferred. So please do what you can to support this little cutie before he is sent away to an institution for life.

His description is "Ian is a very special boy! It is rare to find a child of African descent in Russia, but here he is! Ian is HEALTHY, with no heart condition. He is active and happy and an orphanage favorite. He does have one undescended testicle on the right side".

For more information on Ian and other urgent cases please go to www.reecesrainbow.org/waitingchild2.html

Or contact Andrea at bamaroberts@comcast.net

Trip to the hospital..for my mom

2009-12-14T01:37:00.003-05:00

On Saturday Julian and I were going to go to my work Christmas Party. This would have been our first time out since Wysdom's birth. (Together as a couple and kid's free). We were looking forward to getting out. My mom and our student respite worker were planning on babysitting.

However the unexpected happened. Unfortunately on Saturday morning my mom went to the hospital. She has been dealing with pain in her back and side for several months now. Her doctor has been testing her for a slew of things and all the test are coming back negative. That is good of course, but something somewhere is not right. She still is in a huge amount of pain. On Thursday her doctor changed her medicine and when she took the new pills it made her worse. Since her doctor was not working on the weekend she had to go into emergency. How stressful!!!! She was there for about 8 hours, mostly in the early morning. I went to see her at the hospital on Saturday and by the time I got there she had been discharged. She is home now and in lots of pain and no one knows what it is. My cousin who is a paramedic went to see her tonight as she is not feeling well. My fun loving mother is being weighed down by pain. She is spending all day in bed for the most part. She has been unable to come out and do anything related to Christmas. She is very stressed out about it and her blood pressure keeps going up.

I am hoping that I can help her out this week with something. Either making dinner or just visiting. Last week I couldn't really do to much with all of our appointments. I did drop over today and give her some books on healing and some relaxation cd's and calming herbal teas. I am hoping that she can relax a bit and try not to get to stressed out. I think I will also bring Wysdom over as he brings a big smile to her face and maybe he can distract her from the pain for a little while. Blyss just wants her Nana to do stuff so it's a little harder with her. Please keep her in your prayers over the holidays. I tell ya.... never a quiet moment around here. I think I will be doing some relaxation techniques and taking some extra supplements for stress as well. I am still determined to get into the holiday cheer. I will keep you posted.

Christmas Spirit. How do you get yours?

2009-12-12T04:02:00.010-05:00

Well this week is over and I can finally shift gears and start to think of the holidays. Each day this week was packed with appointments so it hasn't felt like Christmas yet. So I am on a mission to get into the holiday spirit in a matter of a week or so. I am hoping to maybe do a little baking, to do something charitable and oh yes shopping. I have not bought a single thing.I do have a lovely mother who put up my Christmas tree a couple of weeks ago for me. I would love to hear what special things everyone is doing to get into the holiday spirit? Any recipes to share or Christmas cd's that you can share? I really want to do something memorable this year as last year I was in the hospital with Wysdom. Well that's not totally true. I did sneak out for a couple of hours on Christmas night. So please share!!!! I can't wait to read about your Christmas cheer.

As for the rest of the updates:
This Thursday we went for a hearing test. I think that getting things put in Wysdom's ears is his least favorite thing. In the time that I parked the car and got to the room where he was with my husband, Wysdom had a runny nose full of snot, tears streaking down his face and he was trying to catch his breath. Luckily the technician got a few readings and decided that he really doesn't like the test. So she decided to stop for now as we know he is hearing better after the tubes were put in his ears. Friday we had an appointment scheduled about an hour a way for his plastics appointment for his forehead.(For those of you new to my blog-see post on plastic surgeon for more info as to why we are going to see one. Sorry my link is not working, something about pop ups.) Anyways we decided to cancel due to the weather,lack of sleep and general tiredness this week.

Eye Clinic and G Tube Updates

2009-12-09T02:39:00.009-05:00

Today we spent the day at the hospital. No emergency!! Just two appointments. We went to get our updates after all of Wysdom's eye tests. We still don't know if he will need surgery yet or not. That will be decided in a couple of months from what I understand. We are to patch Wysdom's left eye for one to two hours a day for the next couple of months. This is in hopes of strengthening his right eye which tends to turn inwards. Both of his eyes turn inwards but the right does it the most.

We found out that THANKFULLY the CAT SCAN was fine. The VEP that we had done a couple of weeks ago(where Wysdom got to watch TV with the electrodes on his head)was not okay and came back as abnormal(for lack of a better word).

So we will see if his eye can strengthen with the patch and some prayers and then go from there. He does have pendulum nystagmus which is an involuntary rhythmic shaking or wobbling of the eyes. There are over 40 types of nystagmus and it is associated with some vision loss. However there is little treatment for it. If he does require surgery it will for his eyes that are crossing not the nystamus. We are told that the surgery would be before he is two years old.

As for the G tube it looks great. Our surgeon also suggested some options for Wysdoms constipation. He suggested that we add in the use of Senna specifically SENAKOT or PEG. Anyone tried either of these with their little ones? I have heard of both before but would like to know if anyone has tried it.

We are off for an RSV shot in the morning and a trip to see an new PT and OT. Thursday a hearing test and Friday to Sick Kids to see the plastics department for his forehead. Wish us luck!

I GOT MY CHRISTMAS GIFT EARLY!!!

2009-12-09T02:27:00.003-05:00

I just want to share that Wysdom gave me an early Christmas Gift yesterday!!!. He sat for the 1st time by himself for a few seconds. He did this several times in a row. I had to call my husband to come and verify that he did it. He has not been showing any signs of sitting. Let me just say that I am so excited and was so surprised that he did it.

Yes I know we are behind in the physical therapy area, but that is okay. I have been okay with the fact that he hasn't sat because I know that he has been through a lot and was sedentary for the weeks after the g tube until it healed. The only time I was really upset was a couple of weeks ago when our therapist hinted that he may not be able to sit. Since then we have made it our goal to prove the opposite. Way to go Wysdom.

Any yes I am feeling a lot better. I am not a hundred percent but a lot better and out of bed. Wysdom sitting definitely gave me the boost that I needed though. Thanks everyone for your thought and wishes.

Mommy is sick

2009-12-04T01:34:00.003-05:00

I am feeling under the weather these days. Looks like I have been brewing a sinus infection over the last little bit. I am into natural remedies and have been taking them for the last couple of weeks. At best it has kept me going and kept things at bay I have been feeling like I was wining the battle. However add in a dose of sleepless nights and a birthday party and some entertaining and WHAM! I AM SICK. So today I bit the bullet and went to the doctors and got some medication that knocked me off my @@@. So I am off to bed and will catch up on your blogs and on my post in a few days hopefully. I need to get better for next week which is packed (and I mean packed) with appointments. Off to bed!

Birthday Party Pics!!

2009-12-01T01:54:00.021-05:00

Here is a shot of Wysdom's cake and some pictures from his Birthday party. This is Part 1 of 2. This weekend we only had my side of the family over for the party. Julian's family will be coming down on Sunday for Birthday Part 2. We both have large families and we thought it might be to much to have 30 people squished into our little place. We also didn't want to overwhelm Wysdom with so many people at one time.

This is big sister Blyss getting ready for the party. She was very excited, but also a little jealous too. So we had to get her all dolled up for the party so she felt special too.

Nana and Birthday boy.

Grandpa and Nana came early to help out and get some hugs.

Wysdom really enjoying the whole Birthday thing. He was quite happy with his cake and everyone singing Happy Birthday to him. A little secret is that I practiced singing Happy Birthday with him for about a week prior to his party so he could get used to the song for his big day. It worked. He loved it.( I didn't want him to get startled and have reflux issues all over the cake:)

I think this was pre party. Anyways I love it because I actually caught a smile on camera. That is a hard thing to do! Love ya my chubby man.

Happy First Birthday Wysdom!!

2009-11-28T03:47:00.005-05:00

Happy Birthday Wysdom. I can't believe you are one. Here is a poem that I wrote for Wysdom. I am finding it very hard to summarize this past year and what we have been through. I am truly overwhelmed and so grateful to have Wysdom as part of my life. I plan on posting all weekend what this day means to me. I am hoping to post some pictures later of when Wysdom was first born. If I can figure out how, I will post some video's too. For now Happy Birthday Wysdom. We love you!!

My heart is bursting with love for you
I can't believe you are one year old today
One year ago I saw you for the first time
You were so tiny and perfect
You were called feisty right from the start
Quickly you found a place in my heart

My heart grows with love for you everyday
For all that you have given to me
All that you have been through
I can not imagine my life without you
You are a precious gift for my soul

My heart has been given a chance to grow
Though there are struggles that we face
We have won several battles already
You have the scars to show it
But your smile remains strong

My heart loves you always
With a glance of an eye, you warm my heart
I will fight for you everyday
You were meant to be here
My precious GIFT

Happy Thanksgiving to you.

2009-11-27T02:14:00.002-05:00

Just wanted to say a big Happy Thanksgiving to all of my American blogging friends. Hope you all have a great holiday with your families. I am in Canada so we had our Thanksgiving weekend a little while ago. I am thankful for all of you. Now go enjoy your turkey, pumpkin pies and your little cuties.

Christmas Crafts

2009-11-25T21:56:00.007-05:00

Blyss and I worked on some Christmas time crafts this week. Blyss loves doing crafts. She also loves Christmas and last year I didn't get to celebrate it with her as I would have liked to because I was in the hospital with Wysdom. So this year I have a feeling we will be going all out. We are putting up our tree in the morning. Here are some pictures of our finished products.

Gotta Love Family

2009-11-23T01:25:00.010-05:00

Today Julian's parents came for a visit. They live about and hour and a half away and have been coming down pretty much every Sunday since Wysdom was born. They come with dinner prepared and provide Julian and I with some rest and assistance. Of course they come to see little Wysdom and Blyss.We are so blessed to have family. They are able to catch up on Wysdom's progress and spend some time with Blyss. Not only do they cook dinner, but they clean too. They usually do some laundry like they did this evening. Clean up the big girls messy room and sweep the floors. Julian's dad does any handy work around the house that needs to be done. This is all such a huge gift for us as we are usually pretty busy with Wysdom and all the daily chores and duties pile up.

Julian's Mom(this is an older picture)

Julian's Aunt

Since it is Wysdom's first Birthday at the end of the week I have also been thinking back over the last year. Julian's parents and family have supported us through out the entire year and pregnancy. My sister in laws, Julian's mom and Aunt came one day when I was pregnant and totally decorated Wysdom's room. They brought everything and I mean everything. Curtains, small area carpet, a lamp, a crib set and clothes. My sister in law brought me her change table(awesome one because it's high enough for us-we are both tall) and also curtains and a bed skirt for the crib. My other sister in law lent me her travelling breat pump set for the year so that I could pump breast milk for Wysdom. Julian's Uncle who comes down every Sunday to help with the food, but who also cleans a lot for me. His family came to visit us when Wysdom was born and we stayed at the RMH over Christmas and brought us dinner and gift so we could feel like we were celebrating Christmas. They came to Sick Kid's Hospital many times when he had his open heart surgery. They have told everyone at their church about Wysdom and we recieve lots of support and prayers from everyone in their congregation. They even have done a video montage of Wysdom on the big screen at their church( we haven't seen it yet but will post it once we get a copy)They help entertain Blyss when I am just so burnt out. This evening they did all of the wonder full things that they always do and I am so truly blessed to have them as part of my life.

Then there is my parents.They live in the same city as we do. They have provided amazing support as well. Everything from sending over food and doing my groceries shopping. My dad cooks a big pot of rice and peas every Sunday and sends it over.
She has been able to watch and take care of Blyss each time Wysdom is in the hospital. I am sure she never thought that he would be in the hospital for the first two months of his life. So she watched Blyss that entire time and that is not an easy job when you have rheumatoid arthritis and have an active child to watch. She also is on call for whenever I need to go to medical appointments(which we all know is often). As well on days when I just need some help she stops by. My sister helps with Blyss too and takes care of her when I am away by helping my mom.

My parents( a month before the g tube)

My mom and Wysdom a day or two after he was born

So I just wanted to share a big THANK YOU for all the help and support that we have been given over the year. We love you all and we could NOT imagine being on this journey without all of their help, love and many prayers. We know you all have been touched by Wysdom's presence and love him dearly.

Therapy updates and a big old wave!

2009-11-21T02:13:00.008-05:00

For the last week I have been trying to teach Wysdom how to wave at me. Today, when I came home, unpacked the groceries and briefly said "hi" to him. I failed to give him his regular greeting which is a big kiss and smooch on the face. However when I turned around to look at him, he was all twisted in his bouncy chair looking at me and WAVING!!! Oh how excited I was and still am!!! He is really trying to communicate. I have to go pick up some books or Cd's on signing. I only use one or two signs now with him. I think he looks ready to start some more.

Therapy updates
On another note early in the week I was feeling kind of upset after a couple of therapy session. It seems that sometimes the therapist just don't think Wysdom is ready for or can do certain things. I beg to differ of course, but sometimes it just seems like a little bit of a tug of war or uphill battle. Don't get me wrong the therapist are okay but have different opinions and probably some preconceived ideas on what Wysdom can and can't do. So this week I had to advocate on Wysdom's behalf and let the therapist know that he is ready to start to drink. He wants to drink, he is eager to drink. They thought that he is not developmentally ready to do so. So I challenged them. I mean come on now, it's not an issue of aspiration or anything. It's just that's their opinion and guess what? Wysdom sure did show them. Yes it was his first time drinking out of a cup, but he managed and surprised them!!

Next we moved onto our PT appointment where she didn't seem optimistic that Wysdom would master sitting. Yes I know he is behind in that area, but it really ticked me off that I got that vibe from her. I came out and asked her what she thought about him being able to sit and she kind of hesitated and didn't say to much. Which in reality said a lot! So my husband and I talked it over and just have made up our own plan of what we believe and also what we have to do in the area of feeding and sitting. We all have lots of work ahead of us, but for now we are enjoying Wysdom. He will be one year old next week and we are trying to decide what to do for his birthday next week.

Eye clinic and other updates

2009-11-18T02:44:00.007-05:00

Today we went to the eye clinic at the Hospital For Sick Kids. Wysdom has been having several tests done to see if he will need eye surgery in the future or not. Today was our last test before we get our answers. The test that was done today is called a VEP or Visual Evoked Potential. It is essentially visual electrophysiology. What this really means is that they hook you up to a lot of electrodes and then let you watch a computer screen with a bunch of images on it. They record and analyze the data on how you respond to moving patterns that are shown.

Only one parent was allowed to go in so Julian went in with Wysdom, while Blyss and I hung out and tried not to get any germs:). The test went well in that Wysdom was calm and watched the screen which showed patterns and cartoons.He sits with Julian sometimes when he works on the computer so I was sure he would love this test and it would be easy for him. He was done in 20 minutes-yeah. The driving to and from the hospital was not a "yeah" for me as it took a total of about 3 and a half to 4 hours to get there and back. To say the least I am busted tired since I drove. I always drive as I think Julian can handle Wysdom better in the car if his reflux kicks in, which it did many times today. We are praying for good results from all of the eye tests and hoping for the best. To be honest right now I am so not into another surgery as I need some time to recharge my batteries so to speak. Anyways hoping for good results. THINK POSITIVE, GOOD THOUGHTS, THINK POSITIVE..... You get the picture.

As far as the g tube and the reflux goes we still have some issues. The g tube is healing a lot better than before. The reflux on the other hand is still pretty violent and constant. It doesn't help now that he has a cold with lots of mucus. We are using reflux meds that speed up his metabolism and help with the acid. A big culprit I believe is gas and constipation. So I am researching natural things that can be done and am considering going to a naturopath for some help. I do have a background in nutrition(almost, I haven't quite completed the program yet..but maybe one day). I will be looking at a combination of things like increasing fibre, using magnesium and some teas that have been recommended. Last night was another bad night, but not as bad as the weekend. Julian and I had a few hours sleep each and changed off like shift workers. Wysdom cried from the gas again and was in some severe pain however it only lasted for a short while and one dose of Tylenol helped.

Wysdom has already found a way to entertain himself with the g tube. This is and will be an issue. I can feel it. He was so used to the ng that he used to like holding it and playing with the feeding pump tube. It was almost like a comfort thing to him. I think he liked the feel in his hands(not his nose). Well for the last couple of days we have caught him playing with the end of the tube. He is creative in that he uses his hands and also his feet. He rubs his little feet together and catches the tube between his toes and pulls. The nurse has assured me that this g tube is supposed to be hard to pull out-so we are keeping our fingers crossed. He also likes to play with the tube at the actual insertion spot. So far he just holds onto it. What a little trouble maker:)... Oh how I love this little guy, he really is much fun and keeps us on our toes.

I can breath...so far so good

2009-11-16T05:28:00.005-05:00

Wysdom seems to be doing a lot better. After I wrote the post we tried some of the suggestions that everyone gave us about venting and taking some of the pressure off of his stomach. I left the tube open for a while and he seemed to be more comfortable. We also took milk out of his stomach when he was uncomfortable. To me it seems like he takes a long time to digest it. We were able to cut back on the Tylenol and Advil and then we restarted feeds. We did his first feed at 30mls and hour. It went real slow working him up to his regular feeds of 135mls...but we did it by the end of Saturday. Albeit it is at a different rate that we kept adjusting. We started at 30 mls and worked our way up. He is now at about 120mls per hour and we will still try to move that up to his regular of 135 per hour. We also got a chance to talk to a doctor on call who verbally increased his doses of reflux meds to his current rate. So we upped those as soon as possible.

What a crazy 2 days that was. We really are not sure what happened but we are guessing two things. We think that he may have been really constipated and as mentioned by some of you, that the milk had no where to go except up and out. The second thing was the piece of whatever it was that we found in his milk that he threw up. It was kind of crunchy and sharp and maybe that was stuck in his throat and kept him gagging and clearing his throat. We normally do have lots of reflux but he doesn't usually clear his throat like that. Once the foreign substance came out his gagging reduced. We are not sure what it is. We watch him like a hawk because of his reflux so we don't think it's something he swallowed. My mom thought it resembled crunchy blood? Who knows? I thought maybe a part of the g tube? Anyways he also ended up pooping several times later that day so he got some relief. All of the intense gas that he had as well has reduced. The gas was so strong that it would push the pump out of the g tube. We are using the peg tube right now and he hasn't had a fundo but we still need to vent quite a bit. I am going to call our surgeon and talk to him about this. Right after surgery we had talked to him about the hopes that the g tube would reduce the reflux and he stated sometimes it increases it. Well wouldn't you know it? I think it has. He is supposed to be one of the top surgeons.

I have to thank all of you for your thoughts and prayers and my mom who is sick herself with some undiagnosed pain but came over to do all my dishes and clean my house and also take Blyss out for a few hours. I am so thankful for all you that think of Wysdom and send good thoughts and energy our way.

Wysdom has seemed to catch the cold that Blyss has, but it looks manageable right now. I will keep you posted if anything changes. Ah....I can breath now!!! What drama. Hoping for a drama free week. Next weekend is he is one year old and I hope that he is feeling good by then.

I think I am going to freak out one of these days.

2009-11-14T16:50:00.010-05:00

Okay I am going to freak out soon!! Okay really I do not like to focus on the negative too much and like to be more optimistic, but oh my gosh lately life is hitting me with a ton of bricks. We are on a rocky road to say the least. Sorry for the long ramble. I am exhausted and frustrated and have had an hour sleep.

Blyss picked up bad cold sometime early this week. (Probably when the girl in her gym class coughed on her as her mother sat beside her and watched. Ugh that's a whole other story) So we have been trying to keep Blyss our 3 year old away from her favorite brother. She luckily does not have H1N1 or anything like that and seems to be weathering the storm with a little cough and some congestion. Julian and I have been so proud of our efforts tom keep the cold from Wysdom. Then just as Blyss starts to feel better, guess what?

Well Wysdom didn't catch the cold but is struggling with other issues. Yesterday
he was fine in the day. I fed him a bowl of food and he ate really well. Around his 4pm feed he started to spit up and choke a little. This is somewhat his normal as he has reflux. He kept coughing and crying so we stopped the feed and he threw up the rest. Usually we just stop and move onto the next feed. Well this happened for the next 3 feeds. So that means that he did not have any food from 4 pm really on. My husband did the 12am feed and he couldn't keep that down either. I went to bed at 11:30 and to up at 12:00am. I then sat with Wysdom while he screamed his head off for the rest of the night. Every time I moved him or layed him down he cried and went into a fit where he became so upset and full of gas. At 2:00am we started to really panic and called our on call nursing company. We spoke to a nurse and mention our concerns about him not being able to tolerate any food and also when we tried it sounded like he was aspirating which does not really happen for him. She suggested we do no food for the night and that she would show up at 8:00am. She also suggested to use a suppository( well that didn't go well or work) To be honest we don't know what the #### was or is still going on. He is pushing like he is constipated, crying hysterically and throwing up non stop. I stayed up all night with him and then slept for an hour before the nurse came.

When our nurse came his heart rate was up in the 180's and his 02 sats were low. He cried like I have never seen him cry. Last week was nothing to this. He started to get so overworked and couldn't catch his breath. She suggested that we alternate between Tylenol and Advil and that if we could not get any food to stay down to go into the hospital!!!!!!!!!!!! So needless to say that I was crying and freaking out...we just got outta there. Meanwhile Blyss is freaking out to because her brother is screaming. So luckily we got half a feed into him that took about 3 hours to do. He didn't poop, but he has soooo much gas. We have heard that venting the tube will help but it seems to be like a cycle. He cries, we vent, he cries we vent more..... I am so confused as to what it is. While all of this is going on we called to hospitals and talked to both of the on call doctors and they suggested that we continue to do what we are doing.

Then..as we are finishing the feed the feeding tube attachment from the pump pops off on it's own I guess from gas. All the milk pours onto the floor and in the middle of the milk is some foreign object. Not to big,red or brown maybe a sticker maybe a piece of plastic or something. Shortly after this Wysdom stops his cat like clearing of his throat. Julian are not sure if the g tube has broken inside or if he ate something he shouldn't have but we are happy he is calm. Unfortunately all day he has continued to be fussy and require venting and drugs.

So that is where we are at right now. We are runnin his feeds over 2 hours and he is having trouble keepin that down. Please send us good thoughts and pray that we get over this and that my little man can just be himself and not in pain. Any G TUBE Mama's have any tips on venting or why this is occurring? Any Mama's that deal with constipation in their little ones, can you shed some light? Or could this be teething too? Or everything at once. We are so lost right now.... Any help would be great. I am really starting to wonder what the heck is going on lately with our luck??? So right now we are just waiting to see how each feed goes and to see if we need to bring him into the hospital. Ugh!!!!!!!!!!! I so don't want to go back, but I don't know what else to do for him?! Next week is packed with appointments for his eyes, his hearing, his feeding team and his physio and I am just feeling so overwhelmed with him being sick. I just want my happy little man back.

Celebrate Being: Our Buddy Walk

2009-11-11T02:27:00.012-05:00

We went to our local Buddy Walk on the weekend.

This was our second walk. We went last year when I was pregnant. It was a last minute thing last year as I was really nervous and not in the head space to go since I was having a very hard pregnancy with some complications. I thought that it would be too much for me last year, but it ended up being what I needed. Support and smiling faces. I fell in love with their name and idea of the Canadian Down Syndrome Campaign called " Celebrate Being".

This year it was also a very last minute thing because of Wysdom's g tube. We weren't sure if he was going to be up for it. As it turns out...he was up for it. So at the last minute we grabbed our stuff, my mom and sister and headed off for the walk. It was such a beautiful day. Although we didn't stay long, it was so nice to do the walk and feel like part of our local community. Since Wysdom has kept us busy we haven't connected that much with our local community as of yet. So it was nice to be able to go out and do just that. Here are a few pictures from the day.

As you can see, Wysdom is interested in his hands and not smiling for the camera.

It was so last minute that we ended up at the end of the walk.

This is Wysdom enjoying the fresh air.

This is my sister, mom, niece and Blyss just minutes before the walk.

Next year our goal is to be prepared, have more family members and maybe even do up some t-shirts.

A Little Glitch with the g tube.

2009-11-06T18:00:00.011-05:00

Things have been a little crazy around here and I haven't gotten a chance to update. We got home on Monday from the hospital.

Tuesday we went and got some blood work done for Wysdom and he got his H1N1 shot. I must say that it was pretty uneventful. We were able to take him into the clinic and get it done right away.He didn't have any fever or reactions and we are so thankful for that. The clinic treats children with high needs so there was no line or chaos. When we got home on Tuesday we had a home care nurse come and visit us and order some supplies for us. She thought that the g tube site looked a little gunky or full of leakage and pus. Yup it didn't look to good. I have never seen one before in person, but I felt that it looked a little painful. Wysdom would scream his head off every time we cleaned it. Oh how my heart hurt this week just hearing him in so much pain. My stomach would start to knot at the thought of cleaning it and I was worried if I was doing it right. So I was very happy to have the nurses opinion.

So Wednesday we continued to clean the wound as best as we could. It was very difficult to clean as the g tube was so tight against the skin. We were given all these instructions to clean underneath the tube and rotate the bar,but we were having a hard time. Later in the the day we had our feeding team come in to weigh Wysdom and to see how he is doing. His weight is 19 pounds and he actually gained some through the week in the hospital. He has started to babble more, respond to more noises and open his mouth for food. Ah what a great site that is. It's so encouraging to see now that the ng is out.

Thursday our nurse came back to see how the g tube wound was doing and she thought that something was not right. She thought that it was still to tight and wanted us to go back to the hospital for them to check it out. That's right! Can you believe it. So we called and got an appointment for Friday morning. She was also concerned with how much pain Wysdom was in when she went near the tube. I was also alarmed and emotionally drained from all of the pain he was in and screaming he was doing.

Today(Friday) we headed back to the HOSPITAL. The nurse and the surgeon decided that the tube was to tight. Unfortunately since it has been so tight we have not been able to clean under the t bar and the bad news is that the pressure of it cut his wound open more.!!!!!!!!!!!!! So now there is a tear. Oh my poor little man. The surgeon says that this can happen and that now we just have to wait to see if it will heal. So we headed home a little disappointed that this happened. Blyss can literally not take her brother screaming anymore and has to be removed from the area while his dressing gets change. We tried to do this at the start but both my husband and I were working on Wysdom together. The good news in all of this is that his eating and babbling seem to be thriving in the absence of the ng. As well for the first time tonight he didn't freak out and scream when we cleaned the g tube. So that was encouraging and such a relief to me.

Sorry for the long blog. All I can say that it is sure hard sometimes to be a mom to a medically fragile child. It's not that you don't love them, because I love him more everyday. It's just that I hate seeing him in pain. So I am praying that he has better days ahead. Boy Wysdom, you are one tough boy.

WE ARE HOME!!!

2009-11-02T17:45:00.020-05:00

Pre Surgery

Daddy hanging out with the big boy.

Mommy looking exhausted and frazzled minutes before handing her baby over to the nurse. Yup! I broke down and cried.

Post Surgery
Isn't he so handsome without that tube!!!

Blyss visiting on Halloween. Boy did she every get dolled up by Nana. Nail polish and all. She made a lot of people smile by just showing up at the hospital in her outfit!!

Yup!!! We made it home. We got home just around 5:30 this evening. We are truly so happy to be home. We are all a little giggly and amazed!! This surgery went really well and everything went as planned even though we were surrounded by chaos around us. Bed shortages and H1N1 surrounded us everywhere.

Wysdom looks so handsome and happy without his ng tube. I think it will really sink in, in a couple of days when we really realize how easy it it going to be without the stethoscope, tape and daily worry. Wysdom is thriving and playing and has been a great little boy. He was a little fussy at times and cranky as to be expected, but has returned to his babbling, playing and smiling.

I am always humbled and aware that my situation is not bad at all. I am always touched by the people around me in the hospital going through such horrible times. I am always a little emotional when I meet other families who are going through such terrible ordeals and struggles. We had 4 different roommates which included a hernia operation, a ruptured appendix, a back surgery and a car accident. As well there was a horrific car accident down the hall and a teenage girl who was screaming in pain all day and night-I never got to connect with her or her family but my prayers go out to them.

When we got home today from the hospital my copy of GIFTS 2 had finally arrived. I am so excited!!!

I must say thank you for all of your prayers. I am so honored to be part of this blogging community that has proved me with such support, love and hope. I really didn't get to blog at the hospital because we couldn't get connected so I had to wait until now. Well I am off to bed, I am exhausted. Blyss kept us SO SO busy at the hospital getting into everything. Sleep, ha! Rest, ha! What's that? Iam looking forward to catching up on everyones posts and taking some new photo's of Wysdom. However that will have to wait a bit. Off for a H1N1 shot in the morning and some blood work for the big guy!!

Surgery is done and all is good

2009-10-30T22:08:00.002-04:00

I just wanted to let everyone know that Wysdom did have his surgery this morning at 8:00am. Everything went really well. We got a room quite a bit later but we are happy. The hospital is swarming with the swine flu so we are keeping a low profile. Wysdom has been a little cranky as expected. However he did smile and his cheeks look so good tube free!!! I just got into Ronald McDonald House and I am so happy that we have a place to bring Blyss.

Thanks everyone for your prayers and support for our family. It worked!!!!!I am exhausted and am going to hit the bed. Thanks again.

Poem For The Day

2009-10-30T04:00:00.003-04:00

31 For 21 Challenge: Day 30

It is 4:00am and we are just packing up to go out to the hospital. I though that I would share a poem for the day and start the day off right.

A child is like a butterfly in the wind.
Some can fly higher than others;
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.
Author Unknown

"The soul is healed by being with children" Fyodor Dostoyevsky

Guess what? Yup Surgery is back on.

2009-10-29T14:03:00.008-04:00

31 For 21 Challenge: Day 29

Here is a picture of Wysdom with his contraption on. He wore this all night and was NOT happy.

Here's the good, the bad and everything in between.Yesterday after we relaxed and got Wysdom comfortable, I started to make some calls to all of the doctors and therapists that we frequent. I rebooked everything that I cancelled earlier this month. I also booked Wysdom's appointment for his H1N1 shot.( I have decided to get it but that's a whole other story) Anyways after about 10 minutes of making all of these calls, we got a call. Yup you guessed it. They rebooked his surgery for Friday at 8:00am. They can't guarantee that the same thing won't happen in that we get there and it's cancelled, but we have both of the original surgeons involved so we are going to give it a try. I am excited and tired at the same time. I am truly ready to move on. The thought of having the ng for another month was very frustrating since his skin and throat are so irritated. So we are happy. Luckily I didn't unpack too much. So we will be leaving the house at around 5 am to get to the hospital for 6:30am. My mom again, will be taking Blyss for the night so that provides us with some help. We may also get a room at Ronald McDonald House tonight which would be great as they have games for Blyss and provide great free accommodations.

On a bad note I got sick last night. I actually had the scare of my life because I starting having intense stomach cramps and had to run to the bathroom( no pun intended) I was quite sick. I thought that maybe I had the swine flu or something crazy from the hospital that I may have picked up. After a couple of hours of cramps and upset stomach I started to feel better. I read over the symptoms for the swine flu and knew then that I didn't have it. So we have come to the conclusion that I may have gotten food poisoning from the lunch we had. I ate a salad with my diner and after that is when I got sick. I am feeling a little rough today with all the chaos and stomach cramps....but I am on the mend. I have been wearing a mask for the last 2 days anyways just so that Wysdom wouldn't catch anything.

I just wanted to say thanks to everyone for supporting me during this busy and crazy time. We will keep you posted. Keep your fingers crossed that the surgery is a go. Everyone have a Happy Halloween!!!!

Surgery Cancelled. Is it too early for wine?

2009-10-28T13:23:00.005-04:00

31 For 21 Challenge: Day 28

Just to let you all know we just walked in the door to our house. It has been another crazy day today. Just wanted to let you all know that Wysdom's surgery has been cancelled. We left at 7:30am this morning all packed for several days and drove an hour and a bit and when we got there the surgeon told us that it was cancelled. He said that the hospital is over flowing and there are absolutely no beds. There is an OR spot but no where to put him!! We are being rescheduled for later next month. So frustrated!

Anyways we bumped into our cardiologist and he did a whole work up on Wysdom and then sent us home with this contraption that is called DCG or Dynamic Electrocardiography which will stay on Wysdom for 24 hours and then we have to drive back tomorrow and drop it off. It has about 4-6 leads that stick on his chest then he is wrapped in tape and has a mesh shirt put on him. I will take some pictures later, now I just need to gather myself and relax for a bit.

Thanks for all the support and prayers. We truly do appreciate it. Even though today is crazy it's still worth it because we love this little man so much!!!

Pre Halloween: Snow white a frog and a devil

2009-10-28T00:53:00.010-04:00

31 for 21 Challenge: Day 28

Well just in case I didn't get out of the hospital in time, I got the kid's all dressed up in costumes last night. Sorry there is no time to edit the pics...but just wanted to share our fun. Wysdom has 2 costumes. The frog was a costume that Blyss had when she was a baby and the devil I just picked up. Truly he is an angel, but that is all that they had left in his size. Well it's one am and I am off to bed. Enjoy. I love the frog at the end. I am going to do some editing and blow that one up. And of course Blyss makes a perfect snow white.

The Hospital: Getting Ready and Getting Nervous

2009-10-27T13:02:00.009-04:00

31 For 21 Challenge: Day 27

We are spending the day getting ready for Wysdom's G tube and ear tube surgery tomorrow. Really I know it is not that major of an operation and I shouldn't be to worried or nervous...but I am. It seems with each new hospital visit and procedure that I tend to get more and more nervous.It is like all of the previous hospital stays come flooding back to my mind with each new one. Crazy!! Maybe I am more nervous because I now know what will happen or maybe because Wysdom is a complicated little man. I know I will get through this fine as I made through his 8 hour OHS and three week recover. It's just pre surgery jitters and butterflies.

This time I am optimistic that our stay will be good and just praying that we can stay germ free. We will be on the general ward as we do not have private insurance so this is a bit of a concern. However on the plus side, we have stayed at 3 hospitals for extended lengths of time and this one seems to be the best so far for us.

We have to be there at 9am for his 10:30 surgery. Although I don't have nerves of steel I have been blessed with the ability to plan, organize and coordinate things. I think my previous jobs in social services and outreach have honed my skill. So our agenda today is the following:

*Pack a bag of toys, clothes, blankets and diapers.
*Bring health card, phone book and planner
*Call cardiologist to see if they can visit him on the ward and do the EKG while we are there instead of next Tuesday so we don't have to make a second trip
*Pack a bag for Blyss( she will be moving around and staying with us and also with my mom)
*Pack all of her and Wysdom's Halloween costumes...as I am not sure where we will be.
*Pack all of his medical and feeding equipment including his pump, syringes etc.
*Call Ronald MacDonald House to see if they have room for us as we live an hour away from the hospital and only one parent can stay overnight and we will also have Blyss.
*Find and have backup numbers of hotels just in case we can't stay at RMH
*Review Wysdom's restricted feeding protocol
*Bring Blyss to swimming today
*Pack breast pump and all attachments
*And then the usual stuff like making dinner and giving baths etc.

Oh yes and BREATH!!!!! I am sure there is a lot more but you get the idea of how my day is going. I had planned to make homemade Halloween cookies with Blyss but instead I passed that duty onto my mom. (gotta love mom's)

Well that's my post for today. Wish us luck and I will keep you posted I am going to try to keep up with the challenge as we are almost done. We are told that we will have to stay for 3 nights for sure. Then as long as everything is okay we should be home on Halloween Day. Last night I got Blyss and Wysdom dressed up in their costumes and took some pictures so I will share those on Wednesday. I am so excited to get the ng out of his little nose and kiss those two cheeks!!! He is going to be so happy to get rid of the ng as I know my extended family is too. Well I am off to swimming.

Pumpkins and Hot Chocolate

2009-10-26T20:33:00.010-04:00

31 For 21 Challenge: Day 26

Well after yesterdays drama I thought I would post some fun pictures. We do have a lot of fun around here to so it's only fair that I share that as well.We have gone to the pumpkin patch twice this month. This is my first time ever in my life going to a pumpkin patch. Blyss had a great time and so did Julian and myself. I am sure Wysdom loved it too. He was licking the fresh crisp air.Unfortunately his new snow jacket is a little big and awkward for him, but otherwise he was great.

Here is my big boy!!

Blyss is loving the activities.

Some yummy squash that Blyss picked up that we made into soup.

Crazy Day: Never a Dull Moment

2009-10-26T04:15:00.007-04:00

31 For 21 Challenge: Day 25(late)

Well today was an eventful day. Just as my in laws drove in from out of town for the day, Wysdom pulled out his ng tube again. We always go to the hospital where they put it in. It has never been an option that we put it in ourselves because he has the weighted ng tube and therefore he gets an x ray done each time a new one is inserted. So today when my husband called the hospital the doctor was like "can you feed him his formula with a syringe for the night?" Ah NO! Big NO we can not. He only takes a few mls from the syringe. For Wysdom to take 135mls would be impossible. The doctor told my husband that the pediatric ward where we would go to get the ng put in was swarming with the flu and that the nurses were also very busy.

Okay...so plan B. Put the ng in ourselves, something that we have never done. So we got all prepared and my husband tried the first time to put the ng in. He had a screaming baby and lots of resistance. So I tried and got it in. However when we checked for the pop(with a syringe and stethoscope to see if we could hear air in the stomach)we could not hear anything. Normally we are able to pull back some air in the tube to see if we get some stomach fluids. If there are fluids, then we know that the ng is in the stomach not the lungs. Well when we pulled back today, we got blood. Can I just say that I was totally freaked out for a bit. I thought that I punctured something and hurt my baby. So we quickly pulled the tube out. This was not a great idea since we knew we had to put it back in. So calmly we discussed what it could be and figured that it was probably blood from his throat or so we hoped. So I put the ng back in again and pulled out some blood. Honestly, it looked like mucus with blood mixed in it. So we called the hospital and the doctor on call said that it was probably that and he wasn't surprised at there being some irritation. So it was done and in. Yah we didn't have to go into the hospital and that's a good thing because I definitely don't want Wysdom getting the flu especially with his g tube surgery coming up on Wednesday. Poor thing though, I can't wait until the ng comes out so his esophagus can heal. So after that we all calmly sat down for something to eat. My first request...WINE!!!

Wysdom's Birth Story

2009-10-25T01:06:00.010-04:00

31For 21 Challenge: Day 24 (late again)

Well I need to go back to the delivery to give you an idea of what a fighter he is. During the pregnancy he faced many issues such as too much amniotic fluid, small size and faulty umbilical cords. I was stressed out a lot however Wysdom calmed me most of the time with his regular movements and flips. He was a very active baby. I also became a part of the down syndrome online group at Baby Center. This gave me tremendous support durring my pregnancy. The moms on this board talked to me daily and answered my questions and concerns and listened to my fears. My fears turned from being about a baby with down syndrdome to wondering if he would survive. Three weeks before my due date they decided to induce me. I was given two days notice that this was going to happen and the main reason was that Wysdom's growth had stunted and my umbilical cords were faulty and not supplying what they needed to be. For a couple of weeks his growth remained the same and he was a little one only weighing around the 4 pound mark. So we headed for the hospital.

With my daughter I had a midwife and planned to have a natural birth at home. Although the home birth was not a possibility with her, I had a birth plan and had wonderful prenatal care. When I unexpectedly became pregnant with Wysdom and before the diagnosis, I envisioned the same process that would include the most natural birth plan.

However I was in for a bit of an adventure. During the delivery my husband Julian, got food poisoning and he had to be absent for most of the delivery. The birth that I had anticipated had turned into a crazy ordeal of "let's try this procedure" and "we have never seen this happen before". For someone like me who wanted to use a midwife and have a natural birth...I ended up with the most technical event know to man.:) I had things done that I have never heard of before..."like cervical stretcher", "probe to be placed in fetal skull", "ultrasound during labour", 'can't find the fetus" and much more. Fortunately I was blessed with the gift of a Douala from my coworkers and she was able to give me support during the labour. After 12 hours it was clear that I was not going to be able to have the baby vaginally. Wysdom's heart rate would slow down every time my medication for the induction went up. I wasn't able to dilate over 5cm over a 12 hour period. It was the scariest event ever. I thought that we were going to loose him.

Finally I was wheeled away for an emergency c-section. Unfortunately an epidural couldn't freeze me properly for the procedure. All but an apple size patch of skin was frozen. For whatever reason this patch would not freeze even at the highest possible dose of drugs. Next came the spinal and next came faces of panic when I still felt one area. Finally, the apple size patch froze and the procedure began.

Even though Wysdom's heart rate was unstable through out the labour, he came out strong and screaming and feisty. Feisty is what they called him!!! And yes I got what I wanted more than anything else...to hold my baby. right away.. and what a beauty he was. I truly think knowing about his diagnosis while being pregnant had been a bleassing for me. When he was born, all I saw was a baby. I had no fear, no tears of sadness just plain old magical love. Love at first site. He was perfect and of sooo cute. All of the things that they focus on in the ultrasounds like nuchal fold, space between toes, curved fingers didn't appear to me and still don't.

He didn't need any oxygen and was breathing fine on his own. After we held him and took several pictures they took him the the NICU. He was in a little incubator for a couple of days. The only medical thing that was really needed was the intervention of the ng to help him with getting his nutrition. He had a great suck but would tucker out after a short period of time. Because of his AVSD they did not want to tire him out. As well he was only 4 pounds at 3 weeks shy of full term so they wanted him to gain weight.

Although he did great at the start we remained in the hospital for the next 2 months. Feeding became the major issue that kept us there. The hospital wanted his weight to go up and his feeding routine to be established. I breastfed him and then he was topped up with the ng for the first month. He was such a fighter and has a strong suck. However even with the strong suck we had some latch issues. After the first month we were transferred to a local hospital. This is where Wysdom picked up an oral aversion and stopped nursing and taking the bottle. This is also where he caught rsv. I guess you can say that our move to the second hospital was not the best choice for us. This is really where we saw Wysdom fight for his life for the first time. He was put on an IV while fighting rsv and was almost sent back to the first hospital for intubation. This Iv took four hours to get in. It was a nightmare. Luckily for us after a week or so the worst was over and he seemed to be able to deal with the rsv and started to recover quickly. After exactly 2 months we were finally discharged with Wysdom, his ng and a handful of medications for his heart. It didn't really matter to us....we were just so happy to be home and this is where we saw Wysdom start to thrive.

How we found out that Wysdom has DS.

2009-10-23T22:23:00.007-04:00

31 For 21 Challenge: Day 23

I am pretty tired since Blyss and I are sick, so I am reposting the story of how we found out that Wysdom had down syndrome and the journey we went through.

Here it is:

I had a two year old girl named Blyss when I found out that I was pregnant. It was quite the shock, the pregnancy I mean. My husband and I wanted more children but we were not ready yet. We had only been married for 2 years and months earlier we just moved into our new home. I was in such shock when I found out that I was pregnant that I did the pregnancy test several times. After purchasing the third test…we realized we were going to have another baby!!! Fast forward to a year and a bit later and we now have Wysdom, an eight month old miracle baby with unparalleled strength. This post is the story of how Wysdom came to be.

Weeks prior to finding out that I was pregnant, I actually thought that I had something wrong with me. I was experiencing lots of cramps and pain in my side. At the time I worked at a nutrition store in town and some of the staff, including myself would try to self diagnose. Did I have IBS? Did I have food poisoning? I was sent for an early ultrasound to even see if I had a tubal pregnancy. Nope…it was not’t IBS (irritable bowel syndrome), I was pregnant!!
When the doctor asked if I wanted to do the screening I agreed and was sent for my ultrasound and blood work at a nearby clinic. It’s funny how you can look back and see the instant your life changes. During the ultrasound, the technician acted funny. I couldn't’t quite put my finger on it, but she seemed tense or distracted. She asked several questions about my daughter Blyss and how she was doing. I just knew that something was not right. At this particular clinic, they give you the results to carry over across the hallway to hand into the receptionist before you complete your blood work. With this little yellow paper in hand I walked over to the receptionist, but before I gave her the sheet I memorized the nuchal fold number on the page. To be honest I don’t know why, but I just did.

Later that evening I popped on the Internet when I couldn't sleep and looked up anything I could find on nuchal fold thickness. I just knew that something was wrong and I cried myself to sleep after looking at many different pictures of what could be. In the morning and next day I tried to shake off this vibe that I had. I went out shopping with my sister and mom, but did not feel that good and was quite distracted. Earlier that morning I had told my husband about my suspicions that something was wrong and he called the lab to see if he could get any information. Of course not!! After shopping that day I came home and one of my first words were “did anyone call?” The answer to that questions shattered our lives.

We were told that the nuchal fold was thick (which I already knew). We were also told that there was a marker on the heart and a mass on the brain. My midwife gently explained to me about a counseling appointment at a hospital about an hour away that I could attend in the next day or two. Of course we wanted go and get more information. After meeting with the counselor we decided to go with CVS testing to see what was wrong with our baby. I would not do amniocentesis because it was too early and anyway the thought of the needle freaked me out. To me the cvs testing sounded safer and the doctor who would perform it seemed quite confident in our meeting. She was very nice and very straight forward and open. She later would say things like “I am not sure what you should do, maybe pray” She never pushed anything on us. We also met a lovely social worker. In about a week’s time we got the results. Prior to the cvs results we were told that our blood work suggested the highest risk for Trisomy 18 with a one in 6 chances of the baby having it. We met with our counselor and she gave us the results- The baby doesn’t have Trisomy 18, or Turner’s syndrome we were told, but rather Down Syndrome. We really did not know what to do as we never thought we would be in this situation. Yes I was in my mid thirties, but we weren’t prepared for this. Really who is? Just hearing those words put us in shock!

Since we found out so early in our pregnancy around the 12th week or so, it left us with way too many weeks to talk about what we would do. We talked, cried, slept, argued and went through hell those weeks. We seemed never to be on the same page. Our main issue was fear and money. We thought about how could we financially handle this pregnancy? Also we were afraid of how it would all turn out. Would the baby walk? Could he or she talk? All of these were questions that we had to find out about.

Over the next several weeks we went through an immense amount of stress. Friends and family all had different ideas of what to do. Yes they would say that the ultimate choice was mine and that whatever we decided they would stick by us. Some thought having this baby would ruin our lives. When the stress became too much to bear, we decided to book an appointment for termination the following week. When I thought about it though, I would get a sick feeling in the pit of my stomach. I researched how and where the termination would be done and in a week’s time it would be over we thought. However on the Friday afternoon about a week away from the appointment, my sister noticed that I was ill at ease and told me “Don’t do this if this is not what you want to do” At that moment I called the counselor and requested more guidance. She let us know that we still had choices to do whatever we wanted. In the meantime we met with a family with a little girl with Down Syndrome, I talked to a mother of a teen with Down Syndrome and I read voraciously. The mother of the teenager said this “if you want to parent this child, you will and can”. This and the families we met stuck a cord with me. One afternoon when the counselor called I asked (without my husband knowing) what the sex of the baby was? I just needed to know. It’s a boy she said! Finding out the sex of the baby was the last thing that tipped the scale and our final decision was to keep our baby. It made the baby real in our minds.

The pregnancy was hard, with stress and medical issues popping up here and there. Too much fluid, small baby, stunted growth were things that we heard. The most shocking news was that Wysdom had a heart defect called AVSD and that this would need surgery. Wysdom was delivered 3 weeks early due to faulty placenta that didn’t allow him to grow. He was born via emergency c section on November 27th 2008 at the weight of 4 pounds and change. It was love at first sight as he screamed and fought his way into this world. All the medical staff said he was feisty!! I should have known from the delivery that he was a fighter and that he was meant to be here, but that’s a whole other story that I will save for the next post…..
Posted

Taking it easy

2009-10-22T20:57:00.003-04:00

31 For 21 Challenge: Day 22

We are taking it easy today. We spent the early part of the day with my grandmother. Blyss has picked up a cold even with my best efforts to keep the house cold free. My crazy hand washing and sanitizing,immune boosters and vitamins and such did not keep us out of the cold zone. I am hoping that she will get better in a couple of days and that Wysdom will not catch it as he has his g tube surgery next week. So we are just taking it easy and trying to get better.

e newsletter

2009-10-22T02:28:00.009-04:00

31 For 21 Challenge: Day 21 (late)

Here is a description of an e newsletter called Bloom, that I have joined. It is not specific to down syndrome but shares information on many different things from books, articles, to online videos relating to children with special needs. I find it interesting so I thought that I would share.

The organization is a is located in Toronto, Canada and is called Bloorview Kids Rehab and is is Canada’s largest children’s rehabilitation hospital. This is their vision: "to create a world of possibility for kids with disability. We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life".

BLOOM the magazine addresses the unique joys and challenges of parenting kids with disabilities by combining firsthand family insights and advice from leading professional experts.You’ve reached the online family of BLOOM where you will find community, friendship and best practices to assist you in raising a child with a disability.
To get their e newsletter go to the following link http://www.bloorview.ca/bloom/

An interesting book.....Changed by a Child

2009-10-20T20:56:00.001-04:00

31 For 21 Challenge: Day 20

I have always been an avid reader. Things did not change when I found out that I was pregnant with Wysdom and that he had Down syndrome. I devoured books. One of the books that I am reading now is called Changed by a Child by Barbara Gill. My blog is acting all wonky so for whatever reason I can't post the link.

This book is great because it is filled with short one page stories and inspirations. Each comes with a quote at the start from an author or a family with a special needs child. It is not exclusively written by parents with children with Down syndrome; however the author does have a child with down syndrome. I like it because for us busy moms we can flip through and read a short story at a time when it gets really hectic.

Being an Advocate!

2009-10-19T21:52:00.000-04:00

31 for 21 Challenge: Day 19

Again and again I learn that as parents of Wysdomn we MUST be the strongest advocate for our child. We have learned this from Wysdom's open heart surgery, several months in the hospital and a battery of medical visits and appointments. At first we used to think that professionals had all the correct answers and best practices in mind for our son. That the pediatrician would remember which medication they prescribed. That our doctor would have an idea of the side effects of the drugs they prescribed for our son. This has especially been the case when Wysdom was first born. I mean I have never had a baby with Down syndrome before, and especially never had a baby with a heart defect. Truly neither had any of my friends or coworkers. So naturally I looked to the medical profession to tell me what is best. What formula to use, how to feed him, what medications to go on and so on. This was really compounded by the fact that my son has a heart defect. That created a sense of fear and dependence on the medical field to help keep him alive.

Still all in all it is our right and responsibility as parents to ask questions? It is our responsibility to discuss things that are a concern to us and to get a second opinion if we are not sure of something. We as parents are ultimately the ones responsible for our children. For example, now when I am in the hospital I ask more and more questions. What is the name of the drug? What is it used for? What are the side effects? Why does he need it? These are things that at first, I took for granted. I used to just trust that the medical field would know more about certain matters and that the right thing would be done.

Over time my husband and I have learned that we can and must monitor and get the doses of medication adjusted when we feel it is needed or has been neglected by the doctors. It is us who double checks what he is being given in that tiny needle or syringe while in the hospital. It is us who states that our child is not well and insists extra tests. It is us that know how hard it is to get a vein for and IV site. We know our child best. This is not only the case in the medical field but also when dealing with therapists and other professionals. After having a visit from a therapist who stated that she had never worked with babies before, let alone anyone with Down syndrome, my husband and I were concerned. How could someone who states openly that they have never worked with children and have only done physical therapy for seniors, be chosen to work with our son. At some point in my life I may have settled for it, but not now. We have to speak up daily to ensure that we are getting the correct services and care for our son.

We are responsible for our child’s well being. I think this especially rings true for parents with little ones that are medically fragile and are exposed to numerous medications, tons of test and multiple surgeries. We the parents, are the central hub of all the information. We tell the ENT what the surgeon said and then we tell the pediatrician what the cardiologist said and so on and so on. There is no system developed for specialist to communicate and share information with each other. They often work independently in their own little area and often don’t communicate with others. We are the nucleus that takes in all the information and disseminates in to all.

We are there to comfort and love our child, to be their cheerleader but also there is a need to advocate on their behalf, to say what they cannot say, to see what no one else sees and to protect them with all of our being. We are their advocate and their voice!

A newborns conversation with God:

2009-10-19T05:08:00.000-04:00

31 For 21 Challenge: Day 18(a bit late)

A newborns conversation with God:

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"God said, "Your angel will be waiting for you and will take care of you."The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.""And what am I going to do when I want to talk to you?"God said, "Your angel will place your hands together and will teach you how to pray.""Who will protect me?"God said, "Your angel will defend you even if it means risking its life.""But I will always be sad because I will not see you anymore."God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."God said, "You will simply call her, "Mom."