Tuesday, July 5, 2011

Still Waiting

Today Bryce and Annalise had an appointment with their neurologist.  I was anxious to see if he had heard anything from Professor Crow in England.  Well, he hasn't, but the reason he hasn't is what has me a little perturbed tonight.  The consent forms that I rushed in to sign over a month ago and the samples of the DNA have not yet been sent to England!  UGH!  He had a few different reasons for not having sent them, but the result is the same...nothing has been happening in the past month while we have been sitting here anxiously waiting for some word from England.  Dr. Narayanan said that he will send it off this week, so hopefully that is the case.

I guess I can't say that nothing has been happening since Dr. N and his team have taken a look at the RNA and compared the strands, but were not able to see any discrepancies in them.  He wasn't sure that this method would work, but gave it a shot anyway.  Hopefully now, he will just send off the info so that Dr. Crow can have a stab and it.  Sometimes I wonder if we will ever really know for sure what is going on with our little ones.  Kind of discouraging.

While we were at the office, Dr. N did put in a referral for Annalise at the wheelchair clinic and also with a speech therapist there for a feeding evaluation and swallow study.  I am so not looking forward to start swallow studies with her.  They were always horrible for Bryce.  She is having a harder time with chewing and swallowing though, so I guess it is best to check and make sure there is no aspirating going on.  I will be taking her in on Friday for a weight check as well since her weight gain had slowed a bit at her 2 year well check.  Hopefully she has gained and everything will go well with the swallow study so that we can continue on as we are in that area.

While waiting for the doctor today and throughout the appointment, Annalise kept wanting to "walk" around and Bryce wanted out of his chair and was super squirmy.  I was so glad that my sister had met me there to help.  When my sister brought out her phone to help entertain them, they both started squawking because Bryce was trying to see and Annalise wanted to hold it.    Dr. Narayanan at one point commented on how full of energy Bryce was and I thought again of how frustrating it must be for him to have all the energy and desires of a 4 yr old locked up in a body that he cannot use to move, run, or even speak.  It seriously is so unfair to him.  While walking the halls with Annalise, I saw a couple of 4 yr old twin boys playing together and laughing while their mom tried to keep them quiet and in one place.  They were having so much fun together.  The reality of what my boy is missing out on really hits when I see others his age and realize what he should be doing at this time in his life.  It's strange to imagine what he would say and do if only he was able to.

1 comment:

Gr8Life said...

WOW!!! a whole month! I can't believe they can hold it for a month and still have it work. I know when I had the kids tested for MLD they wanted blood & urine and it had to overnight expressed!I hope it's still good. It is a different test so I'm sure they know what their doing.
I also hate the swallow studies they do they are a living nightmare. I'm thinking I am going to change my G.I Dr. I have become really frustrated with her. Which is sad because I used to really like her. Do you see anyone at PCH for GI? I have Dr. Ursea over at PCH I now know that it was her nurse that had most of the brains & she hasn't worked there for a few years now.
What you were saying about Bryce not being able to do the things that other kids his age can do I so relate to that it must be SO HARD for them I know I can see in my own childrens eyes their longing to do what the others are doing. I wish Gummy could at least talk to tell us what he's thinking but he doesn't even have that. I feel like his body not only has trapped him but tortures him with pain as well.
This LD thing is really horrible!
But you are really a wonderful mother I hope I can visit with you a little longer sometime. Hugs to you your doing a great job!♥