Routine Changes

We are settling into a new summer routine. 

Oliver started summer school this week. He has preschool in the mornings for the next 4 weeks to help him maintain his skills and prepare for Kindergarten in September. He is with his former preschool teacher, so he is happily running to her each morning and enjoying a bus ride home.

Waverly has been attending day camps at Jill's House. I cannot say enough wonderful things about the work Jill's House does for our family. Not only do they provide families with weekend respite, but they also host day camps in the summer and school breaks. We opted for day camps instead of summer school this year, because we didn't know any of the teachers at her assigned school. Plus we knew she would have such fun playing outside, swimming, having art & music, etc at Jill's House.

As always, once we settle into a routine new changes appear. Waverly has been very wobbly on her feet the past few weeks. She is very slow to find her balance in the morning after she gets out of bed. Her joints are stiffening. And she is falling for no apparent reason. It looks as if her hip is simply giving out and she drops to the ground. She has been on a pureed diet for months now. We knew the day would come when we would need to get her a feeding tube (g-tube) and we feel we are rapidly approaching that day. Thankfully, she hasn't developed pneumonia from aspiration or had any scary choking episodes. However we always wanted to be proactive when it came to her health. With cold and flu season beginning in the winter, we are consulting with our doctors about moving forward with the surgery in the fall. We are meeting with a new GI doctor next month and I hope we leave the appointment feeling confident in a decision. As a mom, there is nothing more basic than keeping your child well fed. Transitioning to reliance on a medical device to do that is not an easy step emotionally.

And as Waverly begins to slow down, Oliver is changing as well. He has always been good about getting out of the car and running to the door to wait for me or standing by the car as I get Waverly out. No longer. He now runs away, almost frantic like. I have to keep a much closer eye on him and hold his hands at all times.

In the midst of all of these changes, it is impossible to not get emotional. I have been struggling with sadness and anger over Sanfilippo. One of the difficulties of this disease is that you are constantly moving through periods of grief as abilities are lost, words disappear. I am grieving new losses and fearing the changes that are to come.


I want you to know that I am reading every post and grieving with you. I know there is nothing anyone can do to take away your pain and loss, but I want you to know you are heard and your children are cherished by someone who only knows about them through the TU grapevine.

I'm so sorry for your pain.
PK said…
Ditto what the previous commenter said (minus the comment about the TU grapevine). Keep up the great work with Waverly and Oliver. You are doing an amazing job in a very difficult situation. Waverly and Oliver are blessed to have you and Matt as parents.
Anonymous said…
I volunteer at Jill's House and came across your blog when I read about your family on the Jill's House main website and googled San Filippo, as I had never heard of it before. I have seen Waverly around many times and was privileged to get to play with her in the pool last week at camp - she is such a beautiful girl, and the staff and volunteers just love her! I can't even begin to express my sympathies for your situation, Even if this comment does not remain on the blog, I hope it brings you comfort to know that there is a whole community that cherishes sweet Wavey.

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