Jun 25, 2010

Peyton graduated today from SK!! I can't believe it.
I have had mixed emotions about his experience in French Immersion, and hope that grade 1 is a little better. We are going to tough out one more year before we make any decisions about switching back to English. This year, of course, has been stressful all around and I have felt like a failure as a mom when it comes to helping him be successful. So next year will hopefully be a do over for all of us. 

Congratulations Peyton! I'm so proud of you and love you bunches.

Jun 18, 2010

So the home care nurse just left.  I don't think we'll be in their program for long, which is fine with me.  I was just reading another SB mom's blog and she mentioned how she went around cleaning her house for the visit of an in home program.  And for that reason alone, I'm looking forward to not having anyone come in my house. Today was a gong show anyways, trying to get Carter to his appointment, dropping off the other two boys and getting back home to try and get things ready for the nurse. So needless to say my house was not the way I wanted it to be...that stresses me out.  Zachary was great although he was very tired.  She did the paper work and left about an hour later.  I sort of feel like it's a waste of their time to come and watch me...but better to be in the system now than potentially be on a waiting list later.

The two older boys and Ryan are off to a father/son camping trip tonight.  I must admit I'm looking forward to being by myself with just Zachary. This past week I have had 6 Dr's appointments in 9 days...I am exhausted.  Here's to him sleeping in tomorrow!! (yeah we'll see about that lol)
Today also marks one year since I found out Zachary was on his way. I know the other days I found out with my other boys, but this one adds new meaning. Considering what I would then encounter 3 months from now. I think that anniversary will be much harder.

Jun 16, 2010

So our trip to neuro was another long day, but came away with encouraging news.  We don't have to continue with regular head ultrasounds.  They want to do an MRI in six months, but other than that, no more visits at this time.
While I was there today, I did a quick tutorial on using a catheter.  I used them while he was still in the hospital, but thought it best to give it a try while there was a nurse present.  She said I did great, so we'll see how I do tomorrow all on my own with no one to hold his legs. If anyone out there has any tips, feel free to pass them along.

On Friday I have a follow up appointment for Carter. I'm not sure if I had mentioned he was going for some testing because he was getting headaches. His MRI was last week and now we see the Dr. I truly do not think anything will be on it.

So nice last Wednesday, I have been to 5 appointments...no wonder my house needs a little help. Although I do have to sing the praises of Mrs Sawyer who watches the boys while I'm gone. She has helped out tremendously with cleaning the house. I don't feel nearly as overwhelmed as what I could.

So tomorrow I plan on doing nothing :)

Jun 14, 2010

So I'm going to start off this post by saying how blessed I have been to have a baby that has been doing remarkable. I have been able to live in a world of bliss, almost able to ignore the fact that Zachary had to have life saving surgery at 16 hours old and spent 11 days at Sick Kids.
But reality bites...
So our visit to Bloorview was good. The nurses and Dr's were phenomenal. It was a long day, but I felt in such good hands. One of the highlights for me, was when Dr. Church (the paediatric Dr), looked straight at me and said "you know this isn't your fault right? It has nothing to do with folic acid and it was random." To some reading this, you may not even know what I mean, so I'll give you a quick background. Studies have shown that taking folic acid has reduced the number of occurrences of spina bifida. And every Dr we have seen has asked me if I was on folic acid prior to becoming pregnant, which in turn feels very demeaning and that it was all my fault by baby was now not as healthy as he could be. So by Dr. Church saying this to me in the tone she did was actually very emotional. I went from feeling blamed all the time to having someone directly affirm to me that there was nothing I could do. And so I pass this on to other moms who have had similar experiences..."it's not your fault!"
On the flip side, now that Zachary is getting older we can start to see where he is not developing as strongly. His feet don't point down. When he stands, it's only on his heels. And he seems more dominant on his left leg. I have borrowed a jolly jumper, which I am hoping will help with putting his toes down as he starts to jump.

Now on to today and our urology clinic. We had a urodynamics test, an ultrasound and visit with the Dr.
Zachary was so good for all he had to do. He is always so pleasant, sure makes life easier.
The Dr then came in with the results of the testing. He feels for precautionary reasons we need to start cathing him 3 times a day. Zachary has what I call a spastic bladder. He does a great job of voiding all or most of all his pee, however is bladder just keeps working even if there is nothing there. Over time this would be like pulling on an elastic and it would eventually lose it's tightness. So we want his bladder to be able to relax and not over work itself. Only time will tell if his bladder will start to relax on it's own. So I go back on Wednesday (I was going there anyways for Neurology) and they will retrain me to cath him. I haven't done it since he was 10 days old.

So he is still doing wonderful, but the last few days have just been a reality check. A new learning experience. So for the next two days I will go on with enjoying my boy and get set for this new journey.
I will let you know how Neuro goes on Wednesday.

Jun 12, 2010

Zachary is 4 months!!!
He has been such a great baby, and is always a big reminder of miracles in our life.
I will update soon about the clinic yesterday...but I will say it went much better than Grandview.
Here is our little man

Jun 10, 2010

So we're off to Bloorview Spina Bifida clinic tomorrow. I am taking my Mom with me, she is such a blessing. If it's going to be anything like the Grandview clinic, I feel like I need an extra set of ears and question asker. It can be very informative, but a bit too much information all at once. I actually just got the summary of the Grandview clinic in the mail today, so that is a big help to think of questions. I am finding a lot of spina bifida is you don't know what you don't know. And when you find out that stuff, you're waiting for the next appointment to finally have a chance to ask it. Anyways, I am very interested in how tomorrow will go and hope Zachary does fantastic. :)

Jun 1, 2010

Just a quick story...
We were at Peyton's first baseball practice and I had forgotten his water bottle at home. Ryan said he would just run over to the gas station to buy some. I suggested he buy two. Carter wanted to know why he should get two, I told him it was because Mommy was a smart lady and knew that he would want one too. Carter proceeded to tell me that if I was so smart I wouldn't have left the water bottle at home!...yup that's my 3 year old :)
Makes me laugh all the time, don't know how he comes up with this stuff.