Celebrating Inchstones: Our Easter in pictures

Tuesday, April 6, 2010

Our Easter in pictures

We all clean up pretty well!

The girls

The boys

There are a ton of outtakes from this set up!

I could do a whole post based just on these pictures!

Easter at my moms

This is all the kids that hunted that day. Well, minus one who was in punishment for an egg stealing incident! Someone joked "wasn't the Easter picture the punishment"! You know what we should do next year.....make them take the picture BEFORE they can hunt! This is my kids, my brother and sis in law's 4 boys, my cousin (I'm not sure why we made Carrie get in the picture, she is all grown up now!) and my older cousins baby, plus 3 kids from across the road. You know, the more the merrier!

This is my cousin Lacy and her sweet peanut, Danilyn! They walked in the Mito What? 5K but the pictures I took of them were awful. This one is great though! And Danilyn was a super egg finder but someones ate her candy when she took a nap!

Cade hunting eggs. He is ill that I made him pause for a picture!

Gracie and her "prize" egg!

Some are too old to hunt eggs!

And some are too hot and thirsty! I'm so glad Asa is drinking from a straw. He thinks it is fun but it really ensures he is hydrated enough!

And we like to make the hiding an adventure, not just the hunting!

We've been hiding an egg in this bird house for as long as I can remember. It is usually so funny trying to get the egg up there. This year Daniel, Lacy's hubby, got it on the first toss. I'm convinced he was training for this since last Easter!

Gracie found this egg but needed a little help from Eric getting it out! She is holder her prized egg in the picture above!

And Chris, my brother, hid an egg on top of the house! Did I mention that I'm a shorty in a family of giants!

We really had a wonderful weekend! The weather couldn't have been nicer, the family couldn't have been more fun, the food couldn't have been yummier! The blessings were really piled on us!! I want to hold these kind of days in my heart and be able to pull them out when I need a boost!

4 comments:

Anonymous said...: Love it Kim. The photos are great. Asa looks great on his power wheel and I love the straw. Go man Go!

Christine; April 6, 2010 at 5:25 PM
Christy said...: Love all the pictures, Kim! And I love your haircut!; April 6, 2010 at 5:40 PM
gg said...: Looks like fun was had by one and all.

I know what you mean - holding the memories close to your heart : ); April 6, 2010 at 8:08 PM
Laura aka Mama Ham said...: Asa looks great!! How old is he now?; April 7, 2010 at 7:27 AM

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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!