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Cardiology Follow Up and Eye Appointment

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!

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.

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

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?

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!

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

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

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?

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.

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

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?

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.

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

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?

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

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?

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?

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...

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?