Saturday, October 18, 2014

In Disbelief I Get To Write This!

I am in absolute awe and disbelief that I get the opportunity to even think about writing this post, let alone actually sit here processing the words through the keys to share with you!

Nine years ago we had no idea what a special kiddo our son would be. While I was expecting Garrett, it was placed on my heart that something would be different about him, but I couldn't pinpoint what it could be. I just knew he would be special needs of some form.

Five years ago, I had no idea if he would ever talk, carry on a conversation, follow instructions, use the toilet, or even have much in the way of happy relationship with anyone years down the road.

Four years ago, we were informed that he had Mitochondrial Disease and was mentally retarded. We were told that he could make it to his 20's, but by then it would be really bad as he will take a downhill turn sometime before then.

And not here we are at age nine with so many glorious miracles surrounding our child!

So how's Garrett?

I will list some of the things going on that have us so excited and busy!

1. Garrett is reading. And I don't mean reading three letter words, but READING! He is sounding out two syllable words and reading signs and books we never imagined he would read! He even fussed at me for passing a restaurant sign too quickly before he could read it saying, "MOM, you need to stop in the middle of the road so I can finish reading that. I want to go eat there one day, so I need to read the name!"

2. Garrett has gone for a week wearing NO diaper at night! He is in big boy undies all night and staying DRY!!!!! THIS IS MAJOR NEWS!!!! We anticipate some mornings with wetness, but we just keep layers of chucks and fitted sheets so those mornings aren't dramatic. We couldn't be happier about this! His self esteem is through the ROOF!

3. Garrett brightens people's days. He just says "hi" or "I want to marry you" or "I love you," and he can make even the toughest exterior warm!!!

4. Garrett is in "big kid church" now on Sundays at Deer Flat. We wavered on the right time to send him from the preschool area to an area with more noise, more movement and less adult-student ratio, but he is loving it, and we are so excited for him and thankful for a church family that loves him for who he is and sees the amazing inside him! God is right there out front of that kid!

5. Garrett is asking to get a bike! He has had all sorts of tricycles, but this week he began to ask for a bike with training wheels. He is so thrilled about it, and I can't wait to take him shopping!

6. Garrett is riding the gas-powered 4-wheeler by himself all over our place! Now it's past irrigation season, he can go all across our alfalfa field by the house, and with it being irrigated by gravity, the ground is corrugated, and he thinks it is fabulous to go bumpity-bump across the field, down the hill, and then fast up the driveway. YES, he wears a helmet!!

7. Perhaps most wonderfully: Garrett's behavior and maturity have given us the chance to do more as a family WITH Garrett instead of the two-family situation we have been living for years. Just today, he went to the Boise mall with the girls, another family and me, and we even ate dinner out! To say this is amazing and wonderful is such an understatement! Last night he lasted an entire BSU football game, and since it was televised, it took longer than any game he has attended. To know we can be a family and have ALL of us involved is so fulfilling.

8. Garrett is GROWING! The  man-cub is looking like a boy now! He has some bone structure to his legs, a little chub on his belly, and has really grown taller. He is so handsome, and to see some volume in those beautiful cheeks when he smiles is indication of the strides he has made!

So what's next?
Well, he will continue to get 750-1000 calories of Pediatric Compleat enteral formula through his button directly into his stomach for the foreseeable future as this seems to be the magic that has him growing. He still enjoys eating by mouth, but we have stopped stressing him by chasing him around with table food. We will go with the flow and let his body show us what it needs and doesn't need.

Research shows that eight months after and appendicostomy or cecostomy (he had the appendicostomy), the colon has had time to heal if it is going to heal from being sick. We did some adjusting of the flushes at the eight month mark and a couple other times, but it appears his colon needs the daily flush, so that looks to be how he will manage his bowels throughout his lifetime. While it would be wonderful if his colon had "healed," it apparently is what it is, but we are so thankful the appendicostomy works so well for him!

We see Dr. Saneto, the Mito specialist in Seattle, in December to show him our improving boy who seems, for now, to be giving Mito the finger!! I know he and his nurse Pam are going to be blown away by Garrett's mental and physical strides. Of course, I always ask the same questions, mostly about prognosis "this time with what we know today" and Mito cocktail doses and EPI-743 drug release in future. Garrett and I fly to Seattle December 21 or 22 and spend one night, go to the appointment, and fly home the next day. We love these trips, and this time we will take in some beautiful Christmas lights!

And this week was the first "scare" we have had with Garrett:
Wednesday Garrett's aide and caregiver text me a couple times telling me that Garrett wasn't looking or feeling right and was asking to go home. It was a crazy day at home for me as we had someone doing some work on a pellet stove install, were sealing the house to keep mice out, and the girls and I were rearranging furniture and deep cleaning. I told the aide to let him know he would nap at home as soon as we got home if I picked him up. His aide said she would watch his temp and check with me in an hour. We knew a couple kiddos from his class were out sick, and we knew there was a stomach and headache bug going around. She text me later and told me to please come get him as he was complaining of a bad headache and crawling on the floor, wanting to crawl into someone's nap- NOT MY KID!!! I picked him up, and when we got home, he wouldn't ever get out of the car. Once out, he could barely walk and kept grabbing his forehead and yelling that his head hurt. I got him to my bed but then realized I needed to get him to go pee before a nap, and when I finally got him to get up, he crumpled into the floor in a ball screaming about his head and just rolling around. SO not my kid! When I got him up and to the potty, he threw up with no warning. I then called his pediatrician, and a nurse returned my call and told me to take him to the ER at Children's in Boise since his electrolytes could be getting out of balance, and he could be going into a crisis. When we stopped on the way to drop Ainslee off a friend's, he opened the car door and threw up again. Let me say he is the best "barfer" of the kiddos as he is a neat one!!! We let Ainslee out and headed on to Boise. We were taken back and he was assessed quickly after they took our Mito protocol letter.  The ER doc was AMAZING by asking a million questions, following our Mito protocol letter to the tee and calling Dr. Saneto to come up with a good plan. I could not have been happier with that EVER!!! God willing, we will always get at least half that good treatment in an ER in the future, and I would still be happy! Because of the headache, the doc ordered a CT scan of his head before starting IV of D10. Head was  clear, all labs were coming back in close to normal, and his IV was started and he headed to a room. We were there for roughly 24 hours, and Garrett left the hospital looking almost normal! I truly believe that the doctor's open mind, calls to our main doc, quick adherence to protocol including the right fluids and meds and compassion made our boy get through what could have been "a big one." Call me nuts, but in my mind, I always have this small place that is held up knowing that these things will be more common as Garrett ages, and they will likely get worse, taking longer to recover and pinpoint the problem. This time is was probably a virus he wasn't handling well. Thank Goodness it was nothing more and that Garrett bounced back so quickly. I guess we can say we have one under our belt and can be thrilled the protocol worked as planned.

That's long overdue, but since we are having such a great time staying busy with the kiddos and including Garrett in so much more, I just don't take the time to blog as much! Some other great things have happened lately, but I just cannot share all tonight. Plus, I want to add PHOTOS, and my eyes are crossing. So here's  one photo to brighten your day!!!!


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