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,

Friday, July 13, 2012

Dear John Paul,

It has been too long since I have written you and so much has happened in these weeks.   We have made great headway on the nursing front and your father and I have been sleeping regularly which feels like a huge luxury!  We have finally been blessed with a great team of nurses who are dedicated and in love with you.

On the 4th of July, you went on another out of home adventure to see lots of cousins and aunts and uncles at my cousin's farm in Leesburg.  This year you stayed inside but I am determined that next year you'll get out to see the chickens and horses and of course the fireworks!  We are rapidly moving in the right direction towards that goal as your first adapted stroller is in route to our house as I write you this.  We also finally met in person some friends who have a daughter with SMA--who have a great set-up for keeping their daughter mobile--I am ready with a few deep cell batteries and an inverter to load onto your new stroller to make it a rolling PICU!

We have also had the pleasure of introducing you to your Great Grandma Gabriel, and some out of town friends who have not had a chance to see you--both the Dana and the Miggins families.

You have had several doctors appointments this month. We finally got you fitted for new hand and foot splints in order to prevent contractures and foot drop.  We got to pick the design for your AFOs (Ankle, Foot, Orthotics)--I had a lot of choices but I had to go with the camo design because let's face are one tough guy!  

We also had two appointments today.  The first appointment was your regular nutrition appointment and you are growing beautifully--very tall and perfectly plump:).  I am starting to do research to investigate new diets for you but for now you are doing just great on your regular baby formula.

The second appointment you had today was with a neuro-opthomologist.  Your father and I were very eager to investigate if there are ways to help improve your eye control and tracking because we were really hoping it would help you communicate in conjunction with technology in the future.  We were disappointed to learn that you have trouble with your eyes that goes beyond simple weak muscles.  The doctor dialated your eyes and saw that you have a smaller and paler optic nerve than is normal.  He suspects that it could be both damage at the optic nerve as well as your brain.  This doctor was one of the doctors who met you very early on when you were born and he remembered how well you could look around and focus then and notes the difference.   We noticed the change initially sometime after your surgery but it's hard to know for sure when it started because prior to surgery you had so much obstructing your face that it was hard to tell what was going on.

 It will take some more testing and possibly another MRI in order to try to get a better understanding of what caused this problem.  The two options are: that while you were in the NICU at Children's, you had an event that deprived your brain of oxygen for long enough that you sustained damage (and we are not aware of any one event which could explain this scenario since any desat you had was resolved quickly no matter how severe), OR you could have a secondary condition which would explain this issue.  Neither explanation seems especially probable to the doctor we spoke to today so it will likely take some time and testing before things become more clear--both the cause and the severity of the problem.  We do know that you can see, but that your vision is impaired to some degree is almost definite.  It seems that with this complication it is unlikely that your ability to track will improve.  The doctor encouraged us to use bold contrasting colors for eye stimulation and continue to just love on you with family and friends....this we can do!

John Paul, while your father and I are saddened that this new development will make it harder for you to do everything we would will not deter us from fighting every day....from finding new ways to love you and help you feel that love.

As always,  I love you so,