Celebrating Inchstones: A little reflecting......

Thursday, September 16, 2010

A little reflecting......

My heart has been a little heavy lately and I haven't had time to sit and write it all out. This blog is MY therapy and if I don't clear my mind i can't let it go. Usually once I post about something I sleep better at night. Funny how things can weigh on you!

Asa will be starting school in about 3 weeks! This is gonna be a huge change for both of us! I know it will be wonderful and I think most of anxiety is about the time leading up to school and planning for school, not school itself. The paper work, the choices available but mostly the evaluations!

Asa is evaluated often. Every 6 months for each of the 3 therapies and EI. Plus a monthly handout from Early Intervention. Then there is the yearly appointment with the developmental ped. Trust me, no kid is more closely watched!! But I've found that starting school requires a different kind of evalution. It requires ME to evaluate Asa!!

You see, when you have a kid who doesn't follow the typical path at some point you stop looking at the typical kid path and you look at YOUR child's path. It is better if this happens sooner rather than later. I remember when Asa was a newborn and I'd think "I don't remember my big kids doing that" or "didn't Anna, Cade and Gracie make eye contact by now". And then there is the comparing him to other typical babies. He holds differently. He holds heavily!! You know when your baby falls asleep in your arms and is just so heavy, that was Asa's norm for soooo long! It is a little better now! It is just normal to compare kids.

At some point though I stopped comparing Asa to other kids. When we did evals I was excited to see him accomplish goals and to set new ones. Even if the ones we checked off were tiny for the typical kid! That's how I got the title for the blog, celebrating inchstones. That is what I do! Each small step is huge for Asa! So maybe others look at him and see all he CAN'T do but I look at him and see the huge strides he has made!

But not for school! I have to take a hard look at what he can't do. That is the only way to be sure his needs are met. I can't say "yay, he can bottom scoot". I have to look closely at the classroom to see if Asa will be able to get around. I can't look at his sensory issues and just see how well he is doing lately. I have look closely at the way we've adapted our whole lives so he doesn't get overstimulated. Which classroom is going to be more sensory friendly. To get Asa what he NEEDS for school, I have to take my blinders off! This doesn't mean that I don't see the great strides he has made but I also have to see where is so far behind.

Another realization is that despite all the therapy, supplements and work we've done, Asa has not caught up. He is no closer to his peers than he was as an infant. Like I said he is the most watched kid! I have most of his evals. If I go back and compare I can see that Asa has made great progress on his devlopment arch but he is no closer to a typical development arch. He has been consistantly 75% delayed gross motor wise. He has been consistantly about 50% delayed in other areas. That means at nearly 3 years old, he has the gross motor skills of a 9 month old. And his communication and cognitive skills are that of a 16-18 month old.

I guess I expected that at some point he'd close the gap and get closer to his peers but in 3 years that hasn't happened. I guess it still could. One good thing about my new awareness is that I can better plan for Asa. I can stop putting off those adaptive things that I've hoped we'd outgrown! With such a delay it seems highly probable that Asa will be in some type of chair for the mobility. A chair requires a ramp so why not go ahead and get started on that. It seems unlikely that he'll be able a regular bed with no adaptations so why not start shopping now. It takes eons to get SN equipment.

I'm not depressed about these new revelations. I just don't usually spend much time focusing on Asa's delays. Does that seem crazy since my whole life is about his delays, therapy and appointments. I just see a cute, sweet, tough little guy who is full of so much love!

A brilliant mom, who has a SN son, blogged about her son starting 7th grade recently. Her words fit my mood perfectly. Like Alison, I realize my child doesn't just belong to me. Asa is so much more that mine. God's love for me and Asa covers all sense of loss and defeat that a negative eval can carry! His love and comfort have seen me through many hard times and will this bump in the road as well.

Please go read Alison's post! I feel like I can learn a lot from her!! She is also a mom of 4 but her kiddos are much older than mine. I can only pray that I manage this new life as well as she has helped her family to do. They are involved in sports, church, camping, well, life! That is my goal and my desire! Delayed or adapted or whatever, we will be involved in LIFE!!

So school begins and Asa's teachers will fall in love with him just like everyone else who works with him. Of that I have no doubt. I'm so thankful that there are amazing people in this world who don't just see the delays but see the smile and twinkling eyes. And if I should happen upon someone who can only see the delay, well, he or she better look out!

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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!