I get worse and worse at this as time goes on. I never discipline myself to get on here and keep up with this like I should. I do this so people of course can keep up with everything but also so we have a "diary" for Peyton.
We went to Houston a few weeks ago and I never posted anything after that because we had just made it through Morgan's birthday, and were approaching Brady's birthday and Halloween. After that we got in over our heads with all kinds of different therapy for Peyton and it's just been hectic.
The last trip to Houston was a short trip, lasting only 2 nights. He did get his hip/leg splint which he hates, and we hate too. It is not user friendly at all. I will have to upload some pictures one of these days so you guys can see what we're talking about. I haven't put updated pictures on here in so long everyone is going to think we traded Peyton in for a different baby when they see him!
He did see the nephrologist there in Houston and basically we know nothing more now than we did before. The renal scan really wan't the right test for his needs. So all that for nothing. Except we have the peace of mind that no matter how bad his right kidney is, the left is compensating for it and he has adequate kidney function as a whole. But we still don't know the cause. The nephrologist referred us to a urologist there in Houston which we'll be seeing Dec. 5. She's going to let this doctor evaluate Peyton and order whatever testing he needs to figure this thing out. Our next trip to Houston will be Dec. 2 - 7.
Other than that, we did the normal routine with therapy and headed home.
Since we've been back I've started Peyton with massage therapy which is really supposed to be quite helpful with his muscle condition, and also started seeing a chiropractor in Johnson City who is really the pick of the litter, haha. Quite different than anyone I've ever seen. He feels like he can make a tremendous difference in Peyton's overall condition so we will try it out for a couple of weeks and see what happens. And he now has an occupational therapist coming to the house 3 evenings a week so it gives me a much needed break from the torture. She is a very nice lady, but has a different approach than the therapists in Houston. She is very gentle and doesn't overdo anything by far. Her opinion is that therapy should never hurt and they should never cry in pain or discomfort. Well she's breaking herself in because she's now seeing that's not as easily avoidable as she first thought in the beginning. At first I felt like such a bad mom when she expressed this to me but I have to think too that Peyton has come a LONG way and made HUGE progress in just a few months with what we were taught to do from the folks in Houston. Down there they believe in aggressive therapy (well they don't kill him or anything) but what they have shown us to do with them has definetely been working. But anyway, we're just glad to have someone else here helping with it and it can't hurt, that's for sure.
We had the kids' pictures made and got the proofs back. We were so excited! They're so good!! Peyton's first pictures - how bad is that? We just have not had a chance until now. We did attempt it at one point but it was a disaster so we walked out. I realize you can get good deals at places like JCPenney, Sears, Walmart, Target, wherever; but when you've got three kids and two are babies it just doesn't work out as well as getting a private photographer to actually take time with your kids.
A couple of more things before I close - we are so blessed to have had our church take up a special Thanksgiving offering to fund Chad's plane tickets. While it's not medically necessary for him to go, as a father he wants and needs to be there and so this has been a huge relief for us. It takes a large chunk of change to pay for 1 or 2 plane tickets each month!
And our massage therapist referred Peyton to the marketing director over Greystone Healthcare for a big fundraising event. They are remodling their facility and will host a big silent auction where all proceeds will go to him. Usually they donate to a charity of some sort, but they wanted to give to a child more local so they chose Peyton! We will have him on the 12:00 news with WCYB to advertise and spread awareness of his condition, and also in the paper and on the radio. Well that's their plans so far anyway. We will be going to a meeting Tuesday at the facility and will find out more details.
Tomorrow we go to Duke for myself. I meet back with my neurologist about my own condition and get re-evaluated. He will get to see Peyton so that's exciting. He filmed him after he was released from the NICU before we came back home. He was so amazed back then that the child even survived. I can't wait for him to see Peyton now.
Well I guess that's all I've got to share for the time being - I will report back as soon as I get a chance when we get more news. Keep praying for our little guy . . .
Monday, November 19, 2007
Subscribe to:
Posts (Atom)