Celebrating Inchstones: Houston Day 3

Tuesday, March 22, 2011

Houston Day 3

Whew, I knew today would be a long day but I didn't realize just how long!

I had a massive post ready, hit post and it disappeared!!! I can not do it all again!

Dr. K was awesome as usual! We need to follow up with the eye doc at Vandy because something weird is going on. She ordered bloodwork. We can come back in a year.

Dr. P was fun. While I don't feel we have a ton of issues I guess if you start looking at the allergy stuff it adds up. She ordered lots of bloodwork. So much bloodwork that the lab tech couldn't do it all at once. We will have Dr. K's done at home.

We rode the train around the park between appts. Despite the pics Asa really like it!

Asa took a nap before we saw Dr. P. This is when Gracie lost her iPod! There is tons of funny conversations to go with that story! She told Barry, "Daddy, that happened in the past, this is now. If something happens a few minutes ago, it is the past. I guess I've just been to school longer than you"!!! Whew girl!! Don't worry she is still alive but only because Barry is busy looking for the extra set of van keys that he lost!

We will get up super early in the morning and head home! Please pray for safe and uneventful travel! Ok, time to pack!

4 comments:

gg said...: Gracie is too funny!!! Have a safe trip home.; March 22, 2011 at 10:32 PM
Clara-Leigh said...: That Gracie!!!!! Those girls give us a run for our money!!! Reminds me of Ainslee telling me, when she was 5, "Mommy, I love you as much as I CAN!" Hhhhmmm....
Glad you made the time in Houston as fun ad you could.
I LOVE to see that train....our favorite activity in Houston!!!!
Prayers and love,
Clara-Leigh; March 26, 2011 at 11:37 AM
Kyla said...: We're native Houstonians and we're about to start seeing Dr. K, too. :) Houston can be a pretty fun place...even on days full of doctor visits in the med center!; March 27, 2011 at 3:02 PM
shawna said...: Wow, we had the same schedule in Houston that you did. We saw Dr. Rhoads on Monday, and Dr. K and Dr. P on Tuesday. I wish I would have read this earlier. I would love to meet a few Mito families.; March 27, 2011 at 5:40 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!