Celebrating Inchstones: Starting the New Year off right

Saturday, January 1, 2011

Starting the New Year off right

Last night our family rang in the New Year like usual. We watched movies and broke out the sparkling grape juice in our plastic champagne flutes! I bought a big party pack at Target for less the $4 three years ago! It had 20 flutes in it and we still have enough left for next year! Now that is savvy shopping!!! This year we celebrated in the eastern time zone with New York and went to bed! I guess technically we slept in the new year!

Asa started 2011 off with a bang! He got up so happy and playful this morning. He ate scrambled eggs with us for breakfast. We were celebrating how far Asa has come with his eating in 2010. This time last year Asa was totally tube fed. At the beginning of the year we tried to do feeding with a big syringe but soon tired of feeding time being such a chore and completely hands on. Soon we did 4 bolus feeds with a pump. This gave us time to play with food while his belly got full from the pump. If he completely revolted we could let him play while on the pump and we could still get things accomplished. In the spring Asa learned to drink from a straw and a whole new world opened. He started drinking most of his pedisure from a straw cup but would still resist and be tube fed. He could drink juice from a juice box though and this gave him added hydration. Shortly after he turned 3 in October he started accepting more textures and even better, he started asking for food and tastes! Even as a newborn he never seemed get understand hunger pains and he never asked for food! It was like he was finally enjoying eating! In the last month or so Asa learned to sign "more please" to ask for food! I love it every single time he does this!!!!

Tonight my mom cooked the customary New Years food. Cabbage (for money) and black eyed peas (for health) for the next year. She also made a stew to put up for the winter but we had to eat some NOW! Yummy! I made Asa a plate with cabbage, peas, potatoes, a baby carrot and stew. It was more food than he's ever eaten but I wanted him to try it all. He surprised us by eating it all!!! And still asked for "more please"! I gave him a slice of cheese and he finished all of that!!! And cheese is a new food! The eggs this morning gave him an awful tummy ache and I had to suck the food off his tummy. So far he has handled the cheese fine!

I'm just so thankful with how well he is eating! Is it possible that 2011 might be the year we get rid of the tube? I have to say that I LOVE his tube. Odd as it sounds the tube is such a blessing! We can drain his tummy when it doesn't want to work. We can feed him when he is sick and won't eat. We can give meds when he needs them and refuses. Yes, I'm not sure I want to get rid of the tube! I don't want to have to use it but i like having it around! Kinda like the GUN (as opposed to the "gin" that I orignally posted!) I keep under my pillow.....kidding!

Will 2011 be the year Asa walks? I'm really not sure! I hate to be negative but this is his weakest area and he is soooo far behind. He just isn't adventureous enough to strike out on his own even if his body is ready. He just lacks a confidence in his skills.

Will 2011 be the year we hear him say "Moma" and "Daddy"? Wouldn't that be wonderful?!!!! 2010 brought us several helpful signs and for that I'm so grateful!!! This morning we were talking about "friend" and he created his own version! I wouldn't say he used it on his on but with a lot of encouragement he used his version. He has signed "Daddy" a few times too! Mostly we see "more" or "more please" for hungry or thirsty but he will use it for more kisses or tickles. He signs "all done" and "school". He even signed "thank you" to my mom tonight. So 2010 didn't bring us any words but it brought us communication!!! Whether 2011 brings us more signs or more skill with the iPod touch communication apps or, dare we hope, WORDS, we will be grateful and thankful!

I can't say 2010 was bad to us personally. It brought our family ups and downs. Disappointments and celebrations. It sadly brought the mito family the loss of many little mito fighters. Little fighters whose too short life's have taught us much and given us many smiles. I can only pray that 2011 spare us from more of these losses and instead brings a treatment or cure for all those fighting mito so bravely. Could 2011 really be that year? That is my prayer tonight! 2011 would be a great year for a cure, don't you think?!

3 comments:

Clara-Leigh said...: Wow, what a year, and what a wonderful thing to hope in this year....CURE!!!!
I am all smiles reading Cliff's Notes of all of Asa's 2010 improvements. I am soooooo thrilled to read about the eating, and you brought me back in time in Garrett's life to look back and recall how many blessings like that that wr received!! THANKFUL!!
I just had a funny thought though: Next year this time I bet Asa will be talking and will clearly say,"Mommy, I want some of that Gin you keep under your pillow!" HA!!!!
Like you say, we have to keep celebrating the inchstones and not lose sight of all the tiny treasures!!!!
Happy and Blessed 2011!!!
Clara-Leigh; January 2, 2011 at 7:24 AM
Kim and Asa said...: CL, I cracked up at the "gin under your pillow" comment. Then I realized you were replying to the sentence in the post so I went back amd reread my words! Yep I wrote "gin" instead of "gun"! I meant a gun under my pillow!!! I suppose both could be true though! Lol!!!

Happy New Year to y'all!!! Love ya!; January 2, 2011 at 7:51 AM
gg said...: Asa has come so far this year!!! May he continue forward in 2011; Happy New Year to all of you...hope to see you at the mito meeting (i guess it's still on for the end of the month).; January 2, 2011 at 11:32 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!