Happy 4th Birthday Wysdom!

It is hard to describe how glorious it is that we have reached another milestone. Wysdom has turned 4 years old. It feels like time has flown by and at the same time it feels like so much has been achieved by our little man. Wysdom arrived in a flurry after  a planned induction turned into an emergency C-Section. Below is a Wysdom is pictured below a only a few minutes after birth wearing a hand knitted cap made by his great grandmother.

Wysdom Arrives! 

So much has happened in the last four years that it is hard to describe. Here is the story of Wysdom's birth.

Wysdom and Nana A Few Days After His Birth

There have been so many things that I could share. So much has happened in the past for years. Having open heart surgery at 6 months, blenderized diets, getting his g-tube put in, removing his g tube. Endless laughter, learning to talk and dance, going to school on a bus all by himself.

You bet baby!

There have been lots of challenges along the way, but they have been totally outmatched by the endless joy and love that Wysdom has shared with so many. Wysdom loves to dance, and sing (hip hop and reggae are his favourites), he love his sister Blyss, water, reading books and school.

Wysdom at the 2012 Buddy Walk

Wishing you many more Birthdays Wysdom! Thank you to all that have been a part of Wysdom's journey for the last 4 years.

Great News Wysdom is G Tube Free

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

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

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

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

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

Happy 3rd Birthday Wysdom

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

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

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

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

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

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

Preschool, Buddy Walk and More.

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

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

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

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

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

I Love this kid: Updates

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

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

Some Updates

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

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



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

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

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

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

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

Oxygen Monitor: Not Fun

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

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

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

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

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