Celebrating Inchstones: Speed bump

Sunday, May 29, 2011

Speed bump

This has been a tough week. Just when I think I've got it all figured out and things hit a good, even stride we hit a speed bump!

Most pausing was finding out early in the week that our mito friend Emma had died. She had been doing very well so the news was really shocking. Emma was 9. Such a doll. Please keep her mom and dad and 1 year old brother and sister in your prayers. As hard as this week is I can't help but think that the next few will be just as rough. Once the friends and family go home, once the daily routine gets going again. Once the medical equipment has to go back. Please pray for Karrie and Jason.

At the visitation on Friday I found out another mito friend, Jackson, wasn't feeling and was running a fever. By Saturday morning he was in the hospital fighting an infection. His fever has been down and he seems to be better so I'm praying this will be a quick visit!

These are both kids who moms I adore! Don't get me wrong, the kids are amazing but I admire their momas so much! These are ladies who I enjoy getting to meet for extended meals every few months. Ladies that I could talk to for hours. Ladies who I wonder how in the world they get it all done....then I remember it's because they have to and failure is not an option! I love these momas to pieces and pray for them daily. To see them hurting and struggling is not what I wanted!

And in very minor terms considering what my friends are going through, we found out that we need to completely change Asa's diet. I am by no means comparing a minor bump in my own road to the huge road blocks my dear friends are meeting but it is a bump for us still.

Asa is 99% Pedisure feed. He drinks 3 or 4 cups of Pedisure a day. He eats bites or nibbles a few times a day but I'm usually just trilled if he will put something in his mouth! I'm not worried about the calories or content because he has the Pedisure as his main nutrition. Pedisure is dairy based though and allergy testing (via blood test) done in Houston in March showed the Asa is allergic to dairy. Just to be sure though we saw an allergist locally who did the stick test on Friday. Well, he is still allergic to dairy. Along with peanuts, pecans, soy and cats! On and some grasses but that can be fixed with meds.

For the dairy we will remove the allergens for a week. After a week try the foods again. See if we notice a difference. So we began reading labels and trying new foods! Asa has been so happy to try new foods lately so I'm hoping this will be the push I need to really, REALLLLLY, try real food.

I'm not sure it is going so well! For breakfast this morning he had 1/2 a pancake and a cup of Rice Milk. For lunch he had less that 1/2 can potted meat and 1/2 a banana. He also had a applesauce pouch and a handful of Poptart bites. Add in 1/2 cup of apple juice and a cup of tea. That's it for today. How many calories do you think that is? He has already lost a tiny bit of weight since we've dropped from 4 cups of Pedisure to 3 about a month ago. I'm ok if he looses some weight but I don't want to create a problem!

An alternate option is to try an elemental formula like he was on before. I'm not sure he'll drink it orally though. He may, he seems to lack taste buds! Since he is trying to eat more and try new foods then I'm really hoping this will be the push we need get him eating real food! I've just got to get creative and I'm feeling very lazy and creative!

And I'll say again. These are all just minor, minor issues compared to what my friends are dealing with so please say a prayer for them all!

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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!