Celebrating Inchstones: Houston Day 1

Sunday, March 20, 2011

Houston Day 1

We headed out for Houston at 4am this morning! This is the first trip we've planned to drive all the way on one day! 11 hours, that's how long our drive was supposed to be and Barry was worried that if things didn't go smoothly we'd end up getting to Houston at midnight!

The plan was for Gracie to sleep in Asa's room with him last night and then we'd just stick them both in the van, still half asleep and head out. I got up at 3am and by 3:15 Gracie popped out of Asa's room and said "Me and Asa are ready to go!". WHAT?! She was up and ready to go but Asa did stay asleep until the last minute. Neither went back to sleep right away in the van though.

Gracie finally settled in for a nap. She looks pretty cozy if you ask me! Asa had taken a nap earlier to I was happy they both had a little catch up sleep.

Asa had diarrhea for the first part of the trip. We had to stop and change his diaper 4 or 5 times! At the last diaper stop he got freaked out by all the big trucks going by and he started getting sick. Instead of him puking all over the carseat I hooked up a drain bag. Thankfully this kept the puke from coming and it also zonked him out! This is after he woke up and was playing with the extension tube. We'd given him a sucker to try to keep him happy. It didn't keep him from getting sick but he would not let go of it! When he woke up he would put the sucker in his mouth and then the tube! It was so funny!

As soon as we got settled into the hotel Gracie turned on the TV and Asa snatched up the remote!
We ordered pizza delivered to the room (something that never happens in the country!) and watched The Blind Side on TV. While we ate Barry picked up his Dr. Pepper bottle and Asa signed "more" and pointed to the Dr. Pepper! Barry tried to give Asa his juice but signed "more" and pointed to Barry's bottle! Yep, he got a little watered down Dr. Pepper in his cup!

In the morning we will see Dr. Rhoads a GI that Dr. Koenig recommended. We'll have tomorrow afternoon free since another doc had to cancel on us. We are thinking a trip to the zoo may be in order. Tuesday will be busy with a morning visit to Dr. K, the mito doc and then immunology in the afternoon. I think we are all ready to crash tonight!

3 comments:

Unknown said...: Glad to hear you made it safe! Good luck with the upcoming appointments.; March 20, 2011 at 8:30 PM
Clara-Leigh said...: Thinking of you all!!!
Love,
CL; March 21, 2011 at 10:54 AM
~Jana~ said...: Hi Kim,

Ive followed your blog for a few months now. We have an appt with Dr K in the morning as well. Maybe we (and our boys) will get to meet in person. ;); March 21, 2011 at 4:01 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!