Celebrating Inchstones: Shopping day!

Thursday, December 30, 2010

Shopping day!

Boy, what a day!!! Asa got up this morning and was so......something! He was more vocal, grunting and squeaking. A lot! He was also kicking and bouncy and just energetic. It was all very unusual and exciting!! In town today he fussed until I let him walk in Target! He went 2 rows. Then while we were checking out in Walmart Anna walked him again. He drank 2 little cups of tea and ate several bites of hamburger at lunch.

As good as the good was the bad was about as bad! The walking at Target did him in and he started freaking out. I guess he was tired and then went into sensory overload. He insisted on being held and started the sweating and gagging stuff. We took a break and got an Icee and pretzel in the cafe. The kids sat down while I ordered. They sat right next to the drink machine....with ice!!!! Everytime someone got a drink Asa lost it. The Starbucks blender set him off. Poor guy was sooooo jumpy! He startled so bad once that he knocked my cookie off the table! He also screamed most of the way home and didn't stop once we got home. I finally laid down with him and he went right to sleep. I wish he had a way to tell us what he needs. The meltdowns and trantrums are no fun! He had a minor screaming fit at McDs too that got a few looks but at that point I just figured people could sit somewhere else, we were there first!

The sad part is that this day was a special shopping trip for the big kids. They all got giftcards for Christmas and had waited patiently to go shopping. I had put them off until today so the weather would be better for Asa. And the big guys were great. They took turns shopping and didn't argue (too much!). We even went to 4 different stores looking for clothes Anna wanted! All of the fussing with Asa made me short with them though. I tried to be patient and distract Asa but that only works so long. I guess all in all they had a good day and most everybody got what they wanted.....Anna still didn't get any clothes!

I shouldn't be complaining though! A few months ago I would have never tried a day of shopping with all 4 of them. And Asa would have had a feeding pump not eating burgers. And we a several little friends who are inpatient right now with concerning issues and no clear answers. At least my family was all together, even if it wasn't as easy I'd like. We are blessed!!

2 comments:

Clara-Leigh said...: Kim, we battle the same thing......to all be together as a family doing things or not. Today Addie and Ainslee got to go the local outlet mall near Oscar's parents' home here in Louisiana, and Oscar was a SAINT by dropping off us three girls, then taking Garrett across to a huge Cabelas outdoorsy store to see the fish, push a shopping cart and such. SO we got to shop and Garrett was entertained. I have found that when Garrett can push a shopping cart he is pretty happy, so that helps some days. But the car rides....sounds like Asa for your ride home most of the time.
I, like you, am so thankful things are as good as they are even when they seem bad to me!!!!
Happy new year and hugs!!
Clara-Leigh
P.S. Oscar took Addie shopping the first round and she got nothing because we didn't have the coupon that made Justice store marginally reasonable!! So today was round two. Poor Anna!!; December 31, 2010 at 1:58 PM
Clarissa said...: saying a prayer for you all! may 2011 bring you many blessings!; January 1, 2011 at 2:41 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!