Celebrating Inchstones: Houston Day 2

Monday, March 21, 2011

Houston Day 2

At 5:50am Barry woke me up and asked me what time I was getting up. I answered 6am. Then Asa started crying so we began the day early!!

Our GI appt was at 9:30. We took the hotel shuttle at 8:30. We got to the clinic early but I'd rather be early than late any day! Unfortunately the doc was running late!! At 10:30 he had still not come into the room. By the time the action started up Asa was back in the stroller. They did the whole exam with him in the stroller and he didn't shed a tear!!!! Dr. Rhoads even sat up on the exam table and Asa just stared at him! Asa didn't know what to think about that!!

He really didn't have much new info to offer. He talked about adding more Reglan. We may try that. And that's about it. I'm not sure how I feel about that. I'm not sure what I was expecting.

When we left the clinic I called for the shuttle. It was gonna be 20 minutes so we (I) decided we could walk back in that time. It was a nice day and we could see the city if we walked. What I didn't realize is that I underestimated the distance to the hotel!!! It was 2 miles!!! We walked down the side walk of a busy city street, in the wind for 2 miles and Asa didn't get sick at all! He loved it! We got back to the hotel and wanted to rest a little while but he kept crying and signing "go"! So we changed into shorts and headed back out to the zoo. This time we drove! We tried to find a McD's or CFA for a hour but came up empty so when we got to the zoo at 2, we were starving!!! And yes, we paid $30 for 3 burgers and fries! Crazy but we were desperate!! Since it is the only food we've bought all day, I guess it averages out!

The zoo was great! It must be frog mating season and Gracie enjoyed the snake house way too much!!! She was so excited about all the animals and just bounced from place to place! She'd say "come on Asa, let's go look over here" just like he could really follow her around. She left her ipod in the van so I had to use my phone to take her pics. Now I've got tons of blurry animal pics I need to send to her! I gave the mating frogs their privacy though!

Asa did so great at the zoo. Again, there was lots of noise and the wind but Asa never fussed. Not even a whimper and he didn't have a paci the whole time!! Before we left Barry and Gracie got an ice cream cone and Asa and I split a snow cone. It must have given Asa a brain freeze because he squished up his eyes and put his fist to his forehead. When I asked if it hurt his head, he'd grunt and put his fist back to his face! It was so funny! I tried to video but it isn't good.

I was so impressed that Asa handled all this stimulation so well. I even noticed and was thankful that he was laughing in the elevators when those used to make him so sick! But, as we left the zoo, for no reason at all, he started with an episode! UGH! I drained him as we drove back to the hotel.

Tomorrow we see Dr. K at 9am and Dr. P at 1:30. I had hoped to buy tickets for the train that goes around the park so we could ride between visits but you can't buy them for the day ahead. And the ticket stand is on the opposite side of the park from the hospital. Sooooo, do you think I can convince the family to walk across the park, buy train tickets and ride back to the hospital?! After today, I doubt it!

I'll spare you the pics of the zoo. Trust me a camera phone doesn't capture the magic of animals sleeping at the zoo!

2 comments:

~Jana~ said...: Kim,
I doubt you will see this before morning but maybe you will. You do not have to buy tickets for the train before you get on. You can get on the train at the stop across the street from the hospital without a ticket. You ride over to the main train depot, buy your tickets and then get back on to return to your original stop.; March 22, 2011 at 12:36 AM
Kim and Asa said...: ~Jana~, yay!! Thanks for the info!!! Hopefully we'll bump into each other! Thank you!

Kim; March 22, 2011 at 7:06 AM

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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!