Christmas Update

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

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

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

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

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?

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

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!!!

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

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!!

 

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!!

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.

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

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

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!

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

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

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.

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

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.

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!!!

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

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

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.

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?

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

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

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

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

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

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.

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

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

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

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!

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: