Celebrating Inchstones: September 2013

Saturday, September 21, 2013

Look who's finally eating!!

I know it's been a minute since I updated! I just had to stop and update on some fun new goals Asa is finally meeting!

Asa struggled with feeding since he was 2 months old. When he was 9 months old we had a feeding tube put in so that he could grow. He was fed an elemental formula, but we stilled tried to get him to eat normally. He had feeding therapy until he started school when he was 3. Once he learned to drink out of a straw he was able to drink his calories instead of using the tube. We kinda thought this is the way he'd get his nutrition forever. And that was ok. Food could be for fun and he'd drink enough elemental formula to grow.

Then Asa decided to eat!he was eating so much that we got to reduce his cups of formula a day. He didn't eat a large variety of food but he still ate. Midway through last school year, I started sending a lunch box to school for him because he was taking other kids lunch trays!

As his appetite grew so did his desire to try new foods. He was having a hard time with meat and chewing. He would stuff the tiny bites of chicken nuggets into his mouth until he had the whole nugget in his mouth! Sooooo, we started feeding therapy again! He had a breakfast date once a week with sweet Amy, who tried to show him how to chew and swallow. He was not a great learner! He doesn't like following directions very often! Despite his poor cooperation, something clicked with him and he began eating without stuffing his mouth....mostly. and I learned some tricks to help him do his best. We got to a really great place where he eat without choking or me having to clear his mouth out so we stopped therapy again and lived happily ever after!

Not exactly happily ever after.... Now we have to teach him not to eat his art projects!!

And we should talk about not "loving" our food.

He is trying so many new foods! He has started eating scrambled eggs, oatmeal, French fries, broccoli and so much more! Today, he was fusing for Cade's fries and we told Cade to give him a fry to hold. Asa never eats fries but likes to hold them. This time, however, he shoved the fry into his mouth a held his hand out for more!!

We are doing well on the feeding, but we better start working on table manners!

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!