Celebrating Inchstones: Milestone, baby!!!

Thursday, March 25, 2010

Milestone, baby!!!

Forget inchstone, we've got ourselves a bona-fide milestone!! At feeding therapy today, Asa drank a juice box from a straw!!! Yes, he drank from a straw!!! The fact that he drank at all is amazing! But a straw?!!!

His therapist started out offering the juice box. He finally let her get near his mouth and she squirted some juice in. Then he closed his mouth around the straw. Then he started sucking and swallowing on his own!!

In a whispered voice I asked, "Is HE doing that?". Jill whispered back, "Yes!". Then we both went defcon silent!! And our eyes filled with tears, the room became brighter, I heard some angelic singing! Seriously, it was a sweet moment!!! Jill has been working with Asa for 2 years now. Her original goal was to help us avoid the tube. Yeah, that didn't happen and Asa usually gives her a hard time. She came back from maternity leave just last week. We think this was Asa's welcome back gift for her!!

We tried the juice again and he refused until she got him his very own straw. Then he held it out to me while he sucked on his juice box again!! He even drank from a juice box at home tonight. That I have pictures for.....

We also bought a new toy today. I've wanted this since I saw it back a few months ago. Then yesterday, when I couldn't get Asa out of the sun and heat, I decided we'd use this alot. I was so very happy to see it was marked down $20 when I went to the store to get it today. You won't miss us at the ball field! And for a Smarties sucker we'll let you sit in our shade with us! :) It is 7ft. wide so it should hold a bunch of us, or one of us who decides to scoot all around! When I opened it up in the house to try it out, Barry said I just brought all kind of bad luck on us! The thing is huge!

Barry was just jealous cause this is what he was using while he grilled out in the rain and hail! LOL!

And while Cade was doing his homework today, Asa scooted over to him and started trying to play. First, he put a toy on Cade's chair and Cade would knock it down. Asa thought this was great and kept putting the toy up there. Then he started pulling on Cade's arm like he wanted him in the floor with him! Cade finally asked me to move Asa cause he was distracting him! HA!! This really did go on for the whole time Cade was doing his work. Asa sat under him trying to get his attention!

4 comments:

Debbie said...: LOVE it...big moment, HUGE milestone!; March 26, 2010 at 9:47 PM
Anonymous said...: Yeah for Asa and his MILESTONE!!! Drinking a juice box through a straw!!! And I really enjoy all of the pictures! Our God is able to "do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory..."! (Eph.3:20-21a)Your family is so great to all work together so beautifully and share so much love with each other. Keep on keeping on! Love, Mrs. Margaret; March 27, 2010 at 1:36 PM
Christy said...: Oh wow, that brought tears to my eyes too! Way to go, Asa!

I love the umbrella that is really cool!; March 27, 2010 at 6:03 PM
Christina said...: Wow!!! How exciting! I think Amelia was older than Asa when she finally figured out a straw. I actually don't remember how old she was but I do remember it took her forever to figure it out. Oh and that picture of Asa and Cade almost made me cry. It is so stinkin' sweet!!! You can totally see just how crazy Asa is about his big brother. Love it!; March 27, 2010 at 7:47 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!