Thursday, April 30, 2009
Wednesday, April 22, 2009
Tuesday, April 14, 2009
All our doctors at Riley have been wonderful but Dr. Walsh just might be my favorite. He was very patient and listened to all our concerns and while being extremely compassionate answered the things we wanted to know but not necessarily hear. Jake and I knew going into this meeting that at this point there isn't going to be a miracle drug and that the cause (if any) isn't going to bring all good news. On Tuesday someone finally gave us some answers and while not definitive they give us a place to start. We will continue to hope and dream for more.
Dr. Walsh said that the longer we go without knowing the cause the more likely it is that we won't ever know...and at this he felt that there is a 20-30% chance of us knowing the cause. On the plus side, he said that regardless...treatment wouldn't change. So we know that we are doing everything we can for Nicolas. Dr. Walsh feels that this is a genetic issue. He ordered blood work to test 3 different genetic possibilities (none of which are degenerative). The results will take 4-6 weeks to get back.
As for Nicolas' development. Dr. Walsh said statistically speaking Nicolas is not likely to walk or have full use of his arms...AND that he may develop some head control, social smiling, social sounds, and tracking. Due to the severity of his delays along with the infantile spasms children similar to Nicolas have a 80-90% mortalilty rate by the age of 10. Most of this is due to illness and their inability to fight it.
As for the muscle biopsy, he recommends that we wait until Nicolas is 2 years old. Waiting until he is two allows them to get a better muscle sample. Even though we wait, knowing whether he does or doesn't have a muscle disease wouldn't change his current treatment or their opinion of his possible outcomes.
What we asked for was statistics and thats what we got. It is important for us to remember that this is not the final say for Nicolas...it gives us guidance for our prayers. God is mighty and powerful and with us always. Only time will tell what is in store for Nicolas. BUT his life is precious and it will be wonderful.
We will hold him, kiss him, and tell him each and everyday just how precious he is...and thank God for this precious gift He has given us that has blessed us in so many ways. Thank you for your support and prayers. He does hear us and He knows our hearts!
As said in Gratitude by Nichole Nordeman....
Oh, the differences that often are between
What we want and what we really need
So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case . . .
We'll give thanks to You
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace
But Jesus, would You please . . .
Monday, April 13, 2009
Tuesday, April 7, 2009
Monday, April 6, 2009
Lately Nicolas has been clamping his jaw so tight that you can hear his teeth grind. Today when he did it during therapy, we saw a little blood...so I pried his little lips apart to see if he was biting his tongue. He wasn't but his top teeth cut into his gums in front of the lower teeth. After that, it got worse. He proceeded to get upset to where he has loosened a tooth on bottom. One bottom tooth is hanging in front and the other in back of his top teeth. Every time he gets upset he clamps down biting and cuts the area between his two bottom teeth. We are trying to keeping a pacifier in his mouth to help prevent further injury. I'm very heart broken and feel helpless...but I called Riley and they're trying to help us. They have upped his Valium (to try and relax him), I am going to give him Tylenol, and we have an appointment tomorrow at 9:20 to see a Pediatric Dentist here in town. If you have been following this you know he has ALWAYS clamped his jaw...nothing is getting in there! We have constantly asked the Doctors what can we do to relax his jaw...and at this point they're are doing everything they can. When he is older they can Botox the muscle...but not until he is 2! So we keep waiting! It is so frustrating... I'll let you know what we find out tomorrow. Please keep Nicolas in your prayers tonight...It is so heartbreaking to watch.