Celebrating Inchstones: Stupid....stupid in love!

Wednesday, June 15, 2011

Stupid....stupid in love!

I will be blogging from my phone until at least Christmas. It seems that I tried to give the laptop a flying lesson and it failed!

Asa had a GI appt this morning and we were a few minutes late leaving. I had Asa in my left arm, stuff in my left hand and the laptop in my right hand. It was actually a last second decision to even take the laptop. I knew I was gonna have an hour or more in between appts and thought I'd work on some VBS stuff. So at the last second I grabbed the laptop without putting it into the case.

Once at the van I had to lay the laptop on the roof so that I could open the door on Asa's side. I opened the door, emptied my hands and put Asa in his seat. I buckled Asa in, got in myself and took off. It was only after I got a few houses and the laptop fell of did I realize I'd left it on the roof!!The lights still come on but the screen is gone!

Surprisingly I'm not that torn up about it. It was stupid for sure but I'm not having a pity party. We won't be able to replace it but I'm ok with that. How weird is that?!

Now let me tell you why! Asa woke up so happy this morning. He was full of hugs and ready to eat. He was very vocal, doing lots of "aaaaa"'s. He took a bath and played and grinned up at me so happily! Since he was vocal, I'd mimic his "aaa". We had little "aaa" conversations! As I "aaa"ed, I realized it sounded like my "I". I've been trying to get him to sign "I love you" for a while. I kept saying "I love you" when I'd start a mimic "aaa" conversation.

As Asa was sitting on the couch waiting for me to put his clothes on him I started signing it again. And he did it back!!!! Keep in mind I only had 3 minutes to get Asa dressed and into the van for the appt but I said "phewy" to that and videoed his new signing skills!!! Some things are just more important than others!

Here's a link to the video on YouTube: http://www.youtube.com/watch?v=Obj-ntX65yI&feature=youtube_gdata_player

And honestly if that's not enough to put me on cloud nine, I was over the moon when Asa gave me hugs and kisses as I buckled him in the van. This is VERY different from the normal screaming and screeching he usually does while getting buckled in.

So see, you can tell why my mind wasn't on the laptop. But also why I'm not torn up about the computer! Having those little hands communicate with me was divine! Getting the hugs and kisses that back up the signs is miraculous! And I'm not using those words lightly! I do consider it a gift from God each time Asa shows affection and contact and an awareness of my world! Not everyone is given those blessings. Worse yet is the people who don't know to appreciate those blessings. If only they knew....

So goodbye laptop but hello communication and love!! Ha, communication through technology vs communication with my boy?! Which do you think I'd pick?!

1 comment:

Clarissa said...: awesome post, so happy for you and Asa!! God bless!; June 16, 2011 at 3:50 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!