Celebrating Inchstones: Eating!!

Monday, November 22, 2010

Eating!!

Eating! Did you hear me?! EATING!!!! Asa is eating! And not the old way he was tasting. Not with our trickery, distractions and hoop
jumping! This is all on his time. His plan. And completely on His plans!!!!

We have worked so hard for this! And I'm not confident we have mastered anything. This may be one of those brief glimpses of "normal" that fades away. Either way, I'm gonna enjoy and celebrate!

Asa never wanted a bottle or sippy cup. It didn't matter if it was full of breast milk, nasty Neocate, juice or tea. He didn't want anything in his mouth! Then he started letting us put a few textures in his mouth but only on certain spoons, from certain containers, in certain chairs with the perfect amount of quietness or distractions. And we complied!! We did whatever it took! We sung,we danced, we were still, we did it all! And it was tiring and frustrating and sad. And then he'd take a bite and it was wonderful, glorious, amazing!

I'll never forget the day he first drank from a straw! We'd tried a honey bear cup with a straw but we'd squeeze out the liquid without him sucking. We'd tried thickening liquids. We'd tried juice boxes, Capri Suns and cups. And then one day, one beautiful day, he finally sucked from a straw! That opened up a whole new world for us! He could have juice boxes for extra fluids. We put the Pedisure in straw cups and he'd drink it.....usually!

Still he was only living off the Pedisure. He'd have applesauce or yogurt a couple of times a week and only if we had his environment perfect! We add texture and he'd gag. We'd just put it in front of him and he'd gag. Sometimes he seemed to have stomach issues and he wouldn't eat. Other times he just wouldn't eat. Gradually we got him to eat chocolate cheerios, DumDum suckers, Smarties, pudding. What a menu, right!

Gradually Asa started tolerating more textures. He was still picky about the environment he'd eat in and he was so wishy washy there was no consistancy! The ups and downs are so frustrating! Not to mention he had no desire for food! He never asked for it and at best tolerated if we offered!

Then a few weeks ago Asa started willingly eat during feeding therapy! And there was his love of bananas! Then marshmellows! And then he actually WANTED to eat! He'd ask to eat! He'd get all excited and squeally! Now that is fun!!! I've been raving on Facebook about his
eating and I really can't remember everything he has tried! He had a
few bites of meatloaf yesterday. He had spaghetti squash tonight!

But the most amazing thing is his desire to eat! We can work through
his texture issues but only if he has a desire to eat! I wish I knew
what the magic switch was but your guess is as good as mine! Now we
just need to increase the amount he can eat and tolerate! He will
still be dependant on at least 2 bottles of Pedisure for calories and
nutrition. He isn't tube dependant though! We only use it a few times
a week and usually in the mornings when he has gotten too hungry and
then refuses to eat! We use it nearly everyday to drain when he gets
sick. I'm not really in any hurry to get rid of the tube. It is a
comfort item for me! Doesn't that sound odd but as long as he has the
tube I can keep him hydrated and growing!

A cute story....Asa can and will sign "more". He pokes his open palm
with his pointer finger of the other hand. I recently taught him
"please", open palm makes a circular motion over your chest. I'd give
him a bite of cookie. He'd sign "more". I'd do "more, please" until he
got it! It took a whole cookie but he'd finally sign back when I said
the words! I was thrilled!! Then he wouldn't do it again the next day!
Oh well! Until tonight!!! I gave him a bite of squash and he signed
"more". We did this for a while! Then he started making circles on the
table with his palm. Anna said "what is he saying" and I realized it
was "please"! As soon as I said please and did the correct sign, he
did it back!!!! Wow! He has trouble and wants to rub his leg or the
table but it is close and we can definately tell what he is saying! A
step closer to communication! And not a moment too soon!

A not cute story.....I took the radishes away from Asa at the grocery
checkout. Couple that with being tired and hot and he lost it! He
started squealing and schreeching! Ear piercing!!! Several people
around us I signed deeply and there a "maaann" comment from somewhere.
No paci would do, no marshmellows would do, only me holding him which
is impossible while checking out you groceries! So I let him screech
and scream. No need to get flustered, I couldn't change it! That is
just what he does! In between outbursts a family asked how old he was,
in a nice way not that mean, judgemental way! We had a nice chat and
they completely got it! You gotta love when God puts angels in your
path! Just a little "good job mom" when it is tough! Gotta love those
God moments!!

5 comments:

Anonymous said...: I agree with "the angels" at the store... "Way to go, Mom!" Kim and Barry, you all are doing such a great job! Praise the Lord, He is still at work, doing exceedingly abundantly above all that we ask or think! Wow! Happy Thanksgiving to Kim, Barry, Anna, Cade, Gracie, and Asa...and Debbie and Mike, and Bob and Judy!!! Love, Bro. David & Margaret; November 23, 2010 at 9:28 AM
Anonymous said...: So, so, so glad to hear this! Kind of makes me think of Helen Keller and when she made the connection to water and the sign for it. I really think that he is starting to get it. It just makes my day ;o); November 23, 2010 at 12:17 PM
Leylasdad said...: That's excellent news! Great to hear, it must be great to see this too! Keep the good news coming!

Kemal; November 23, 2010 at 4:28 PM
gg said...: Tears in my eyes to see how God is working though Asa. I clearly remember a post in p2p where you wondered rather to continue "forcing" him to eat. And now, he's asking to eat!!!! Overjoyed with his huge mile stone!!!!; November 23, 2010 at 7:58 PM
Heidi said...: sniff, sniff, WTG ASA, more importantly, WTG MOM! Theres no doubt he's eating because of his Ma-Ma that would NEVER give up! LOVE to hear he's eating Kim, such a HUGE milestone--NO inchstone this time! Thats wonderful, I hope it continues. Maybe just keep that tube for the cocktail and sickness :) When or more like IF this happens for Jack...what a celebration we will have...I cant imagine that it will now but that doesnt mean I dont secretly pray about it anyway. LOVE the angels, always to brighten your day. HUGS and prayers always--
Heidi & Jack.; November 23, 2010 at 8:49 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!