Fun times with Spina Bifida

During our last visit to Bloorview Kids Rehab we discussed Jake's bathroom issues (I will post in detail when we get the report in the mail later in the month) and his use of ditropan (sp) and mirolax. Dr Church and Nurse Julia suggested that we once again measure his urine output.  We had to do this a couple of months back but since I was on Mat leave still, it was no big deal and Jake and I made it into a fun sport.  This time around it is a little more challenging since we have to have others involved in the process. Jake has an assistant at school who basically just reminds him to go to the bathroom every 2 hours.  Now the poor women has to take him to the bathroom every 2 hours, weigh his pull up and than record the measurement of urine from what we call the Pee Hat.   Fun times I tell you.

She has absolutely no problem with this which is why I totally adore her.  I even threw in some hand cream for her, because I think she will be doing a lot more hand washing over the next week.  Bloorview gave us 2 "pee hats", so he can leave one at school, but the other one has to be shared between us and the babysitter (Note next time ask for a third one).  We have to do the same process every 2 hours that he is at home and the babysitter has to do it once at 4:00 (She is soooo not happy to be doing it)

After the week is up I have to create a chart and email it to Julia and than we can finally discuss wether we need to change the dosage on his meds.

Jake is at least having fun with it by trying to increase how many ML he urinates each time.  Another positive note, I don't have to  keep reminding him to go and he drinks a lot more water so that he can pee more.

A further positive note, is that means it is one more step closer to Jake not having to wear a diaper or a pull up.  Honestly, Jake really doesn't care right now since he has never really been teased a lot about it, but I know as he gets older that will change.  I know I have mentioned this a thousand times, but I am terrified that someone will call him names and kids won't want to play with him anymore.  I want him to be out of diapers and the sooner the better.

Home With Jake

It’s funny how hard it is to look back and remember all the stuff that happened. Also funny to see how much I have changed since Jake was born. I used to be so Shy, had zero confidence and well quite frankly zero personality (hmm confidence issues or what).
Case in point the only thing anybody I went to public school or high school with only remembers me as the chick that had a crush on Mike Tinker for years.

Anyway off topic as usual – that hasn’t changed. The first few days home were hell – as every new parent knows. We just had a few extra worries on top of no sleep and what the hell are we doing with this new creature. We had to catharsize (sp) him every couple hours, keep a chart on when and how much he went to the bathroom and change his dressing. And not to mention the fact that I was now freefalling into postpartum depression. We also had to go to tons of Dr’s appointments at Sick Kids and Bloorview Kids Rehab. It was insane I honestly don’t remember all the things that happened at this time – it is a total blur. As I remember I will put them in this blog – but don’t hold your breath –the memory thing doesn’t work to well these days.

We did however have lots of help from various nurses, Auntie Shiela, Bloorview Kids Rehab and Sick Kids – but they couldn’t be there all the time. They helped us understand Jake’s condition, what we may expect in the future and how best to help Jake become the very best he could be. We got a crash course in Spina Bifida, Hydrocephalus, ADHD, and all of the complications that go along with these things. I will explain as best I can about all of these things in future posts. And hopefully in simple language cause believe you me I wish there was a Spina Bifida for Dummies -- because it is all so complicated.

Gotta go our newest Lord and Master Jesse has awoke and does not like to be ignored. He does not have Spina Bifida, but believe you me – he has his own issues (I’m seeing
Anger Management courses in the future for him)