Back from another trip to Dallas

Today we came back from another very long trip to Dallas. It seems that these trips really drag on the more we go. But to make then most of the trip we stayed at the Gaylord to do a little swimming, eating and some adventure around the hotel. It is really big. Dont think we will stay again due to the expense but we had a great time there.

This morning Kristin, Brandon and I headed over to Scottish Rite in Dallas to see Dr Burich and his team. Brandon's surgery foot has started turning in again. I was worried that the four bones fused may be damaged and we will be back to sqaure one due to his regression. Dr Birch agreed and we are now headed back to surgery at the end of July. The good news is that there is only one more tendon to repair and the surgery will not be as painful. The bad news, the recovery will be the same. One month in a cast with no weight bearing, one month in a tight cast and then recovery from there. It was a long drive home after the news, however I think both Kristin and I excpeted it. We were both remembing the long hospital stay and little sleep from the first surgery amd hoping this time for the best. Brandon is handling the news well. Surgery is scheduled for July 27 with possible 3 days in patient. It's going to be a long summer. video from before the operation and some after. I put a few pictures and a video from before the operations this past year and some post operation.

Back from Dallas

Sorry this is a little late. Brandon, Kristin and I came back from Dallas last week. Brandon had the cast removed from his wrist. We all could hardly contain ourselves when Dr Birch said it could come off. Brandon does need to wear a brace for three more weeks, but at least he can remove it during baths.

Brandon also received a new more flexible brace. It will take him awhile to learn how to walk with it and more importantly- walk long distances. However, the brace is wild. Brandon thought it reminded him of the magical mystery tour. I will take a picture soon. We also jumped for joy when we found out we dont have to come back for 4 months (June). Not that I dont love Dallas or Brandon doesn't love it, but I am tired of the trip back and forth from Austin to Dallas.

In June they will check Brandon to determine if he will need more surgery in the same foot. It is very possible he will because the foot has started to turn inwards again. If the surgery is needed Brandon will go back in the hospital in late July or August. We will start the whole process over with 1 month no weight bearing (in cast) and one month with weight bearing (in cast) and recovery.

Four more months of no treamtent for now. Brandon is also seeing a genetic metabolic physician in the mean time who is running more tests to find a diagnosis. Will know if he finds anything soon.
More later
Leah

More news

Brandon had the hard cast put on his wrist. The wrist is broken. He will need to wear this cast for another 3 weeks, then back to Dallas to have it removed and have a brace placed on the wrist. Brandon also will get a new brace for his foot. He has not been able to walk on the foot with a shoe on without the hard brace. The new brace will be more flexible and a new 70's design. Brandon is a little anxious about getting another brace. He is very happy wearing the hard brace most of the time.
The bad news - it looks like the foot is again turning inward and Dr Birch believes we will need more surgery. He also said that this surgery to repair more tendons will not be as invasive as the last. I am choosing at this point to not ask too many questions until Dr Birch tells me we have to do this next surgery. I want to try and get through the broken wrist and the new brace first.
Brandon is scheduled to see a new doctor this week. The doctor is a metabolic genetic doctor. This is the only physician we have not seen to help determine a diagnosis for the foot. Again we may never know why both feet are cavernous or why he continues to break bones, but I want to say that I have tried all the tests before I give up on a diagnosis. We still have more genetic tests to run. A little good news, Brandon's scoliosis is now at 38% but his bones have developed enough that they are hopeful it will not get much worse.

Brandon is in good spirits, watched the inauguration and loved every minute of the up to date coverage. Of course he was hoping Paul McCartney would be one of the guest artists or that the Beatles would reunite for the event. More later.

New Setback

Well just when things were starting to look pretty good we have had another setback. Brandon was running (as best he can) in gym with another student and he fell on his wrist. We did not think Brandon had broken his wrist, but Brandon insisted he had broken it. I took him to the hospital and sure enough, it is broken. Brandon has a cast on the right arm from the the fingers to around the elbow. The still is wearing the brace on the right foot so he is a little unstable right now. He really looks miserable but is making the best of it. Scottish Rite has agreed to set the wrist next week when we return for a check on the foot. We are trying to take it easy this three day holiday until the new cast can be placed next week. I have to say he is a real trooper. No stopping at the Willie Museum on the way up or back this time. Leah

Back for a Check-up

Today is Brandon's 16 birthday. Unfortunately for him we were back at Scottish Rite for a follow-up. We tried to make the best of it by staying at the Great Wolfe Lodge. It has an inside waterpark in the hotel. So last night, Brandon played with Patrick, Peggy and me at the hotel swimming at the different areas in the park and playing arcade games. He actually had a very good time.

Today we went to the hospital for a follow-up check on the back, the other foot and the operated foot. We will take more x-rays on the back at the next visit to see if the scoliosis is worse, but the consensus is- if it is worse it still does not require surgery. The second foot has not gotten to the point of surgery and the operated foot looks pretty good. Brandon is actually walking on it better than he has in a long time when he is wearing the brace. If he continues to need the brace we will stay for a fitting of a more permanent brace at the next visit. Also, Dr Birch is checking the foot closely to determine if Brandon needs more surgery. At this point he does not believe so, but they will check it again in January.

Today the doctor and staff gave Brandon a pass on pretty much everything due to his brithday. Brandon will receive his permanent wheelchair this week to help with distances, but hopefully he will not need it too often. A good day for everyone. The next trip we will stop in Hillsboro for the Rock N Roll Museum featuring Willie Nelson. Brandon wants to see the place.

On to Christmas and more Beatles.
Leah

Pictures

The Cast is Off

Yes, finally after 2 months Brandon is cast free. This is good news and bad news. The good news is the foot can begin healing, Brandon can take his endless baths he loves and his clothes options have improved. The bad news - we are back 100% in the wheelchair for the moment. Brandon had a brace made for him and he has worn this for two days (see picture). His is foot is swollen and very dry. Therefore the foot really hurts. He has been complaining about pain. Today (saturday) I have given him a break on the brace as long as he does not attempt to walk on the foot. We also have been putting lotion on the help with the dry skin. I think the next step of trying to get Brandon back walking on the foot will be another slow process. I am hoping in two weeks to see if he can walk some with the walker in hopes to be 100% walking in 6 weeks. We have a recheck in 6 weeks. In the meantime Brandon must use the brace. As expected Brandon doesn't really like the brace but hopefully he will get the hang of it soon. More later


Leah