Friday, September 16, 2011

Horse Fun and Garrett's G.I. Appointment

First, let me share some great news!! No, two bits of great news.
1) After much prayer and serious lack of patience on my part, Addie has a terrific new horse to use for a while. His name is Big Red. He is 22 years old, but don't let numbers fool you!! He is sound, sweet, and oh so pleasant to ride!!!! We thank Joan for letting us borrow her sweet gelding. He is like our Ernie. Joan has had him since he was 5, and Big Red raised her son on his back!!! It was a tearful exchange, but we are honored to get to learn from him!!!
2) I give thanks to God for pulling Ernie, Ainslee's gelding and my first child, through a very scary medical episode. He was twitching all over, eyeballs rolling back into his head and having trouble breathing!! I seriously thought we were losing him. We had the vet out, who thought it was the West Nile virus, but over time he improved back to normal. Then I remembered the acronym HYPP which is a genetic mess up in horses with the sire Impressive anywhere on their papers. Like our kiddos with Mito, depending on the genetic pattern or inheritance, a horse can have it or carry it or have and carry or not have or carry. We never had Ernie tested because he cannot breed as he is "fixed," or as I say, "broken." And he has never had any episodes. So while talking to my sweet friend Vicki about it last night, it hit me that it was the HYPP. SO I researched and we need to change Ernie's feed so we decrease the potassium, and that should prevent further trouble. I was scared to death, but I am so, so thankful it turned out well!! THANK YOU GOD!!!!!
So today the girls wanted to do photo shoots with their horses. Addie is in the hat with Big Red, and Ainslee is with her 3 year old project, Dusty.
And in Garrett news...... We saw his G.I. nurse practitioner on Thursday. Need I once more say how much I love this lady???? Garrett had Megacolon at the end of 2010, meaning his colon alone could hold 7-8 DAYS of stool, leaving Garrett unable to have any sort of sensation or control of that area to help him evacuate. Now that has improved some with more months of Miralax and Exlax. However, his constipation is still very bad. She says he has solid poop that is building up in his intestines but never emptying on time, so then he has lots of very nasty, old, stinky sludge slide past the solid stuff and cause days of no movements then days of many blow-outs with no pattern even on meds. She switched him to Lactalose from Miralax and ordered another cleanout. Hoping we get him cleaned out by Monday!! SO he has to take more than usual of the meds and we wait for 3-5 watery, almost clear stools within 24 hours to know his system is purged. And just when he was wearing big boy underpants and urinating all the time on the potty......gggrrrrr. The NP also says to leave him alone as far as pushing him to have bowel movements on the potty. She wants us to just try to get him where he will ask for a pullup or go into the bathroom with a pullup on to poop. She does not think he has control or awareness of his bowels enough to use the toilet for #2. Meanwhile, she brought up his hoarse voice again. She thinks he is better in the upper portion of the GI with his reflux in that he has healed in the esophagus some, but she is worried he may be damaging his airways with the reflux. The Prevacid helps with the acid but not the physical act of reflux. She is also concerned his airways are not staying open enough due to his low tone. So off to see pulmonology and ENT next. And he is due to see cardiology as well. We hope to see Dr. Koenig, his Mito specialist, in Houston in October or November. She brought up the possibility of Garrett needing a Nissen Fundoplication again. I cringed. This procedure would tighten up the top of the stomach to keep anything from being able to reflux upwards. We thwarted an attempt bu surgeons to go this when he got his feeding tube placed in 2006, but now it is mentioned again. We will see what the other specialist think. I am so thankful for the wonderful doctors in Boise and the access we have to great medical care coverage!!!!
School is going great for Garrett this year. He wakes up before me and wants to get ready and get on the THE BUS!!!!! He loves his teacher and her sweet son, Baylor, who he gets to push in his wheelchair all day!! Today Garrett enjoyed sharing a box of snacks with his class. While so many things Garrett can be so incredibly frustrating, reading a simple note from his teacher about his kindness to his classmates makes things all go to smiles. I also thank God for Garrett's teachers and aides and my dear friend Andrea who is doing his developmental therapy in our home. I can never repay anyone adequately for the love and support they give to our family!!!
On a "we knew it was coming but were in complete denial" note, my parents are leaving to return to their beautiful place in Alabama in a week and a half. I don't think any of us know how much of a huge hole there will be here when they leave. They plan to spend next summer here in our guest house, but that seems like forever away!!! Garrett will be asking about them for weeks after they leave, and he will be running over to "Papa and Nina's house" looking for them when he gets off the bus. He did this last time they left and it just made me cry every time!!!
Grouchy is home for a few weeks, and we are thankful for that for sure!!!! We are irrigating and just put up another cutting of hay. We hope to get a 4th cutting in a couple weeks. Fall is in the air tonight and the moon and stars are brilliant. I can't help but wonder how marvelous and breathtaking Heaven will be if Earth is this amazing!!!
Addie and Ainslee will be giving a presentation about Mitochondrial Disease and passing out Mito awareness bookmarks Sunday in their kids church program. That is our way of participating in Mitochondrial Disease Awareness week. More awareness means more funding which means more research which means better chance for a cure!!!

1 comment:

  1. Wow, you are a good medical mama, even to your horses! :) Glad Ernie will be okay.

    KayTar was just switched from Prevacid to Nexium and it has been AMAZING! If Garrett's reflux is not well-controlled, it might be something to try. It is hard to know with these kiddos, because what works well for one doesn't work the same for the other!