Monday, February 8, 2010

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.