Wanted to update everyone and apologize for taking a while to do a journal entry. There have been a lot of changes in our personal lives and first and foremost our biggest challenge every day is making Blake’s life as comfortable as we can. Blake just came off of spring break and will return to school tomorrow. It’s so hard for me to write about his physical progress cause I am noticing some deterioration with his muscle tone. We still get smiles out of Blake although not as frequently and he still surprises us with those magical days at school while other days he is very quiet. Seizure control is still good and he remains able to swallow without too many problems. I wish I knew what goes on in his head but I must say I think he is content right now. I don’t think Blake will return to China but I must say that I do believe his 2 trips to China have made a big difference in the progression of this disease. Will try to blog more frequently in the upcoming months.
We had a fun Halloween and Blake enjoyed being dressed up as Woody and listening to all the happiness in the children trick or treating. Blake has had a really good week at school and we still haven’t noticed any regression. Right now we are just taking things one day at a time and thankful for each days that goes by without incident.
I haven’t done an update in a while cause things have been pretty crazy on the homefront. Blake is still very happy with no regression since their return from China. Blake is back to school full time and enjoys it very much. We postponed this years Blake’s Purpose golf tournament due to the economy but plan to have it again next year. We haven’t determined if we will do it in the spring or fall as of yet but will keep everyone updated. On the research front it looks as if Bev Davidson is making some great progress and that is who we are funding. I have a call into her this week to get more specifics.
Haven’t done an update in a month cause not much happening over here. Blake still remains the same and has been off for the summer break and is now doing warm water therapy which he is responding to really well. He goes back to school on August 25th which I am sure he is looking forward to. Our pool will finally be done this week so he will get to spend the next few weeks out there. We are still thinking of going back to China later this year but will make that decision later. We are starting preparations for this years Blake’s Purpose golf tournament. Will update on that also.
Blake had a nice 4th of July at our house with several friends and just loved all the children. We have about another week or so before the pool is complete so Jeremy was able to take him in the kiddy pool. He had a great time although he and Talia fell asleep just before the fireworks started. Blake starts water therapy this week and will continue through the summer. We are also having our first Blake’s Purpose meeting this week in preparation for our 3rd annual golf tournament. It may be a bit harder this year due to our struggling economy but I am sure it will still be a big succes.
I just wanted to attempt to upload some photos. Blake has had an amazing weekend again and is so happy and full of life. His godfather Manuel came up for a visit and they brought their yorkies and Blake was in doggie paradise as they were all licking him and loving him.
So with summer sneaking up on us quickly we are looking for things to do to keep Blake busy. This is the last week of school and then summer school for 4 weeks. We are going to start water therapy in July once a week through Easter Seals and continue with the therpeutic horseback riding. I think we are also going to do this suitability training through Easter Seals at the end of August. It”s an aggressive PT/OT program that is everyday for 3 weeks and 4 hours a day. It mocks a program in Poland using an Adeli suit and treats children with CP, neuromuscular conditions, ataxia and other conditions. They basically say that this 3 weeks is more effective than a years worth of therapy. They video the sessions and then send you home to do maintenance and recommend that you do this program 3 times a year. It’s not cheap but we are so excited to try it to see what results we can achieve on top of what we are doing in China.Blake is doing great. He is so lively and happy all the time. He is answering more on verbal cues and just looks amazing. He laughs at Sam and Talia all the time and they just smother him with love. Well, Talia falls all over him trying to be sweet but she is just a brut. We are planning on a trip to Disney this September once the weather cools down a bit.
So Jeremy took the boys camping last weekend and they had a blast. Blake laughed the whole time and seem to really enjoy the whole atmosphere and liked the hammock that was put up just for him. It was a little different for Jeremy this time as he wasn’t used to taking kids and waking up in the middle of the night changing dirty diapers in a tent but they managed. Blake has been having really good weeks in school and in therapy so we are just looking forward to more positive changes.
So it’s been a month since Blake has been home and he is doing quite well. He is back at his normal routine and trying to think of some new things for him to do this summer. Our pool and spa won’t be finished for another month or so and we know that Blake loves to be in the water so we have started putting him in my master bathtub cause it’s nice and big. He just has such a sense of freedom in the water and it makes all of us smile. Jeremy is going camping with Jeremy Day and they will be taking Blake and Samuel. I am a little nervous since they rough it but Jeremy will go the day before and get camp all set up before the kiddo’s arrive.
So Blake made is through his first week of school and did really well. He has been very alert and trying to hard this week. We have been doing alot of stretching with him and now that we have moved we are anxious to get the pool finished so we can get him back in the water. I am going to be looking into a new blog here soon because this one doesn’t work well with all my photos so hopefully can get more pictures up.
