Friday, July 27, 2012

Dear John Paul,

It has been busy around here as usual and we love having you in the mix!  The biggest news is that we got your special stroller that will allow us to have all of your gear on it in a way that you can really get out and about.  I can't wait to take you to the park, the zoo, Joe and Liam's soccer games....a lot of that may not happen until the fall when the weather is a little cooler--because you and 100 degree weather don't get along so well.  The first day you had your stroller though, it was a beautiful day and we had a lovely dinner out on the patio in your stroller.

We also are in the process of getting you a cool bath chair that will make it easier to give you a full bath (instead of sponge baths) would think that something like a bath chair wouldn't be hard to get but I'm afraid everything is a process when it comes to getting things for you--it takes doctor's orders, letters of medical necessity, rejection from one insurance so the other will cover it, etc...I only have the stroller because I ditched protocol and just bought one second hand from another SMA family who's son outgrew his.

We saw your neuro-muscular doctor last week and she seemed to think that the issue with your optic nerve being small and pale could still be related to SMA-- even though there isn't really a precedence for it.  The truth is, as she pointed out,  you aren't presenting as a typical SMA kid does, so this might just be a unique SMA thing to you.  Nonetheless, we need to rule out other possible things that could cause a small optic nerve so the doctor ordered an MRI and a battery of blood work to rule out some metabolic diseases (which is very unlikely).  This will all happen sometime in August most likely.

The most important thing with this development is that we are able to learn what you can and can't see in order to help you enjoy being in the middle of our crazy family and feel loved.

I've been adding pictures of you from all of our summer fun to your slide show on this blog but I need to figure out a better way of showing off your absolute handsomeness! 

Love you always,

1 comment:

  1. The pictures and video of JP and Ben together are absolutely adorable.