Celebrating Inchstones: Appointments and stuff!

Friday, April 9, 2010

Appointments and stuff!

Asa stole my sweet tea while we had lunch!

He held on with both hands!

We made him fill out his own paperwork!

Notice the pain scale....this wasn't for how much of a pain is it to wait hours for a scheduled appointment! Had that been the case, this moma would have been a 7! You wouldn't want to see the picture for that one!!

The super long exam room at the eye center made a great place to practice steps, complete with a rolling stool!!

Look....NO HANDS! Seriously, this skill just poked its long awaited head out this week!!! He even took one step while in this position!!! I believe that is what you'd call, wait for it.....

CRUISING!!

Ok, so maybe he has a little ways to go before he can earn that title but it is in sight!!

Asa playing "Patty Cake" while his eyes dilate! Look at those red eyes!

We had a safe and pretty easy trip. We kept thinking Asa would go to sleep in the van but he was wide awake the whole time!! He was very vocal too. Lots of squeals and grunts and fusses!! I really liked him testing his vocal cords out, he doesn't do that very often!! Unless he is fussing, he can fuss with the best of them, even with no words!!!

The neurology appt was kinda a bust. After waiting in the waiting room for 1 hour and then the exam room for 30min, there really wasn't time to discuss much since we had the eye appt in 20 min! This is the second time this clinic has been sooo far behind with us. I don't mind waiting for a little while but seriously is seems like it is the norm with this clinic. Anyone else have that happen over and over? I'll just email with my questions later. Thankfully we had no pressing or urgent matters to take care of!

So when Dr. B came in he thought we were another family! It was OK though cause I was gonna ask about the same thing this family was after! Meghan, he thought I was you coming after the appeal letter! I told him he had us confused but I wanted the letter too! LOL! He is sending me one to have on hand! Thanks for having him on the ready!!!

Before we left for the eye appt. I left thank you notes for the GI and geneticist that are leaving. Is that weird? I really do like them and they were the 2 most encouraging drs we have!!

The eye appointment went great!!! They dilated Asa's eyes and he did great. The dr. checked his vision and he did great. The dr. checked the back of his eye and he did great! The boy barely moved while she held a magnifying glass to his eye and shined a light in it! He was amazing. His vision is fine and his eye itself was fine. We don't have to come back for 2 years!

While we were waiting for his eyes to dilate he had the best time stepping and scooting around the room! He was so funny and playful!

We had a great day overall! Tiring from driving 2 1/2 hours each way but we made it safe and sound. I just couldn't get Moma to pay attention and stop watching Hannah Montana that they had in both waiting rooms!!! That show is gooooood! Maybe we do need our satellite back! lol

And Cade is fine today! He has been fever free for 24 hours now. I have my doubts about this whole flu test thing. I don't want to jinx us for tomorrow but this has been the easiest flu ever! Was it the Tamiflu or a false positive test. I don't guess it matters, just glad he is feeling so much better! Now to keep everyone else well! Gracie said Cade made her wait on him today! She had to bring him popcorn and OJ so he wouldn't touch the kitchen!! Seriously I didn't want the boy anywhere downstairs!!

Tomorrow, Gracie has 2 softball games and Cade has a baseball game. The weather is supposed to be great so I'm looking forward to it!! Just got to remember to take my allergy medication in the morning!!

Thank you all for the prayers for our travels and for healing for Cade!!

3 comments:

gg said...: I vote it IS cruising....I love watching Asa blossom!!!; April 9, 2010 at 11:31 PM
Heidi said...: Awww, YES, this is cruising! YAY!!! SO funny that picture with him and the pen/clip board! He is really starting to look older these days. Glad the eye appt went well and theres no worries there. Thank goodness Cade is doing better. Jack is really sick with fever tonight and shoot Im at my parents house for spring break and didnt bring his 02 oximeter--thinking we would be OK without it for a few days. But he's struggling, blah. Hopefully this wont last.

Anyway, great update on your little man! He is really coming along Kim, those inchstones are adding up! :) HUGS,
Heidi & Jack.; April 10, 2010 at 2:37 AM
Christina said...: I like all the positive posts here lately! Its so amazing watching Asa finally reach these "inchstones" that we all wondered if he would ever reach. Very, very exciting stuff.

I have a magazine for you. You may already receive it but it was laying on my desk at work and it was about the IEP's (?) you mentioned the other day. I immediately thought of you and snuck it in my bag since I didn't know if it was supposed to be on my desk or not! Haha! It was addressed to someone that is no longer there though so it'll be ok.; April 10, 2010 at 1:17 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!