Wednesday, December 7, 2011

Medical Update and Great News!

First, the GREAT NEWS!!!
Actually there are two bits of really great news!
First, Shelby, who is 17 and in high school and a dear, sweet friend of ours, has taken over all of Garrett's in-home and community developmental therapy. Her mom was covering until Shelby turned 17, since the developmental therapists have to be 17 years old. Shelby is so amazing with Garrett, and he adores her. She works so hard to engage him in the therapy activities, and she is so creative and willing to try her own new ideas. I absolutely adore and love this gal!!!
Second, and Shelby would probably write a very excited contribution here about this topic:
GARRETT HAS BEEN GOING TO THE BATHROOM ON HIS OWN TO PEE!!!!!! Now some of you might not appreciate this, but trust me, it is HUGE!!!! We have been working with him since summer by taking him to the potty every hour, then every two hours and so on, and it took months for him to do that, and he was doing really well listening to us and usually cooperating by going potty when we asked. But just a few days ago he was upstairs in our home and he came lumbering down the stairs and broke into a trot as he passed through the living room and said, "Mom, I have to go to the potty!" I almost fell over but then relaxed as I realized he likely was just spitting out phrases he hears frequently. But then I had Ainslee spy on him and he DID go potty!!!! WOOOOOO----HOOOOOOOO!!!!!!!
Pooping on the potty isn't on the radar just yet, but I think it might be on the map at least!!!! THERE IS HOPE!!!!! He has gone to pee on his own 5-7 times, and even twice for Shelby. THANK YOU LORD!!!

And I realize I haven't mentioned much about medical things as far as Garrett goes. Friday Addie has a cardiology check-up, and we will also get the results of Garrett's 24 hour Holter monitor he wore a couple weeks ago. I expect it to be all good news. Addie had a little strange something show up on her ECHO in Louisiana over a year ago, but the doctor was not alarmed. He just wanted to see her annually. So we have a cardiologist here who I think I have raved about before. LOVE HER!!! Then tomorrow we go for a repeat of a portion of the hearing testing Garrett flunked to see if it is still the same result. The ENT was not worried, but the audiologist wanted to be cautious. As for Mito issues, we have decided to transfer Garrett to Dr. Saneto with Seattle Childrens as it is a quick one hour flight from Idaho as opposed to the one day of flying needed to get us to Houston to Dr. Koenig. I am bummed because I adore Dr. Koenig and her staff, and they have taken such great care of our boy. However, I need to be practical and logical here! Every time we have to go to Houston, which is about every 9 months, I have to jump through hoop after hoop with insurance since we are going out of our region for care. This should make things simpler. Meanwhile, we have to get a fasting blood draw done locally for Dr. Saneto's office, and we have the kit for the larger mito genome testing that we will have done if our insurance covers. Just have to wait and see! Garrett is around 42 pounds now and is a little string bean!! I cannot believe how he has gotten taller, and more handsome, if that is possible! His tummy is still not cooperating, but I know it could be much worse. He still trips and shuffles when he runs sometimes, but overall he can do what HE wants to do as far as play, so I am thrilled!!!
SO there is the very delayed update! Not too exciting, but it's what's up!!


1 comment:

  1. Clara-Leigh, we see Dr. Saneto and I can't rave highly enough about him! He is every bit as nice and knowledgeable as he comes across at UMDF's "Ask the Doctor." Garrett will be in excellent hands.

    Dr. S. dx'ed our daughter Angela with a mito myopathy years ago...something we haven't pursued particularly since her Rett syndrome looms so large. But lately she's displaying some myoclonus that is WAY above and beyond Rett and it could possibly be the mito stuff rearing up. We pray so...some of the other possibilities are much less favorable. We're hopeful he might have some ideas for helping her.

    I'm happy you'll be with Saneto...he's a great doctor and a very kind person.

    And congratulations on the toilteting. What a HUGE accomplishment!