Progress 3-6 Years

3 to 6 years:

I'm talking about his medical issues at the moment but it's important to remember he is still a person. He was and is the funniest, happiest boy with the brightest blue eyes!

 It was at this point that things started to get a little easier. Doctor appointments weren't piling up as much and we were starting to understand more fully what his needs would be. It was also at this point that I started to realize  and cope with the fact that my child really is different, he really does have special needs and he is behind other kids his age. He was not a baby crawling around on the floor anymore, but he was a toddler crawling on the floor and that's not normal. Around 3.5 years old he went through a really combative and defiant stage. It seemed normal developmentally but not normal for his personality. Looking back I think he must have started to have some frustrations about how his 18 month old twin sisters could get around better than him. He was starting to realize he was different as well.

One time when he was around 3 or 4 I let him sleep in his braces. We had been gone all day and we were exhausted. Between being pregnant and exhausted from a long day and getting him and the twins in bed I must have just forgotten. When he woke up the next morning I took his socks off and this is what happened.....

Several layers of skin came off with his sock leaving the imprint of the lines in his sock. I was mortified and felt like an awful mother. It was yet another sign about how sensitive his skin is. You can bet I have never left him in braces overnight again!!

At 4 years old he still had that pressure sore under his toe and it had now been two years of bandaging that toe every single morning, first thing in the morning. We kept this wound clean from infection by diluting and applying tea tree oil to it as well as galbanum.









This was the year he had his first surgery for his club foot. They told us he would have to be in a cast for several weeks and told us that he needed to be non weight bearing for X amount of time. I was like "Yeah right! you keep an active 4 year old off of his feet after surgery when he can't feel his foot (any pain)!" I of course did my best to keep him busy with sitting activities but it was another testament to me that pain can be a good thing! This is a picture of the wound after several weeks of casting.

 

The summer of when he was 3 years old he had 3 shunt revisions, 3 in one summer! Up to this point he still wasn't catheterizing and was able to empty his bladder on his own. Constipation was becoming more and more of a battle and he seemed to need more and more laxative. He would get so backed up that when his bowels finally got moving he would cry and scream for several hours of the night when he finally got to the point of the diarrhea pushing through. It was awful!!

 

On to the exciting news....somewhere around 4  years old he learned to jump off of something and actually land it instead of  his knees buckling. Here is a video demonstrating what I mean.... 

 

At 5 years old he started kindergarten

He is so social and he was so excited to meet new friends. He had already been to preschool offered by the public school system so he was used to being away from me for a short while, riding the bus and having other people change his diaper. It was at this point that the doctors really started to push wanting us to start catheterizing him (for social reasons). I was uncomfortable with this idea as it could cause scar tissue and cause him to have UTI's, something he had never had before but many kids with SB struggle with. We sent him to school with his walker, diapers and extra clothes and the school was very accommodating. Overall the year from 5 to 6 were pretty slow and uneventful medically (thank goodness)! He did have a shunt revision which he seemed to keep having around every 9 months from the time he was two years old but no other major surgeries or injuries, yahoo! This was also the year that I decided to start homeschooling him which you can read about here. So it was kind of a relief that things were a little more calm medically cause I was freaking out inside about how to be successful homeschooling.

 

One of the most exciting things that year was that he learned to do a front flip on the trampoline...