Wednesday, July 20, 2011

Just got an email from Dr. Narayanan saying that Bryce and Annalise's forms and blood samples have arrived in England.  Hopefully we will hear more soon!

Saturday, July 16, 2011

Doing Better

It's been a few days and I thought I should let you all know that Bryce is doing much better.  He ran a low grade fever on Wednesday, but after taking a 4&1/2 hour nap in his chair, he woke up happy and fever free.  He continues to struggle with a small cough and is a little more tired than normal, but other than that he seems fine.

After he had been asleep for about an hour today, I heard him cry a little so I went in to check on him.  He just looked so cute and I couldn't help climbing into the bed next to him so that I could snuggle him for just a few minutes.  He curled right into me and looked up at me and grinned.  I loved that moment!  I then asked him if he wanted to get up and he shook his head just slightly from side to side so I asked him if he wanted to sleep a little longer.  He put his eyes up...which is his way of saying "yes" and then curled into me again and fell back to sleep.    So sweet.  I just love that boy and I just live for moments like that!

Tuesday, July 12, 2011

Change of Weather, Change of Health

The weather here has definitely become the nasty hot that we as Arizonans endure so that we can have beautiful weather throughout the rest of the year.  (At least that is how I see it!)  We have had some amazing Thunder storms the last few nights and the rain has been wonderful.  However, the change in weather wreaks havoc on my poor little one's bodies.  First of all the thunder and lightning terrifies Bryce so he and I have spent some quality time together through the night cuddling, counting, and singing to get through the storms.  The change in the weather also seems to affect their spasticity and causes their muscles to become tighter and more painful.  We do lots of stretching, massage, and of course pain medicine during these times.

The scariest symptom of weather change for Bryce is croup.  The wind, the dust, and the rain seem to bring it on every time.  Last night we ended up heading to the ER with him.  Just as I was heading to bed, he woke with croup and after doing all the "normal" things we do to help, he was still having a lot of trouble breathing and was still a bit blue.  We had our neighbor come over and John, Bryce, and I loaded up and started heading to the hospital.  As we drove, Bryce's breathing became a little lighter and he was able to relax some.  His color came back and by the time we got there, he was not struggling as much.  After seeing all the other people in the ER, we decided to just sit out in the humidity a little longer and see if Bryce would continue to breathe better on his own.  Luckily he did and we decided that it would be better to take him back home and continue with our own breathing therapies rather then take him in and expose him to something else in the waiting room.  We prayed some more, hoped it was the right decision, and headed home.

He and I spend the rest of the night sleeping upright on the couch.  Luckily he made it through without too many more issues and he seems to be even better this morning.  He is still pretty croupy, but at least he is breathing better.  He was scheduled to get new AFO's this morning since he has outgrown his others, but I changed that appointment and hope to just spend the day here and maybe get a little nap in this afternoon!

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.