Blake finished summer school last week and now has 5 weeks off before star
ting 2nd grade. I really wish he didn’t have to go so long without school because he loves the routine and being around all of his teachers and friends at school. Tonight Blake came over and we got to have time to just hug on him and love him. I love all the smiles he gave me.
Blake is loving the warm weather and the pool. We purchased a floatie and floatie vest that supports him so he can just relax and feel the water. It’s great to see him enjoying things!
Summer is finally here and it seems to be treating Blakey well. He has been very cognitive, smiley and more verbal than I have seen him in a while. We have been seizure free for a couple months although we still deal with the jerks on a daily basis. Clonopan seems to be a great fix for that and helps with Blakes range of motion. We have 2 more weeks of summer school and then Blake will be off for 5 weeks before he starts 2nd grade. I think about the day 4 years ago when Blake was diagnosed and can’t believe with all that he has been through that he still seems so happy…especially when the kids in his class are getting in trouble.
Blake had a wonderful Memorial Day weekend! He went on vacation to a beach house in Newport and to Disneyland. It was a long drive but sure was worth it. He was all smiles once we got there. The weather was perfect and all the kids had a blast. Blake got to go on multiple rides including Splash Mountain, Pirates of the Caribbean, Winnie the Pooh and Buzz Lightyear! He had the best time, nothing could get the smiles and laughs off his face. It was amazing to see him so happy and full of life!
As many of you know, Blake’s Purpose has been working with Dr. Beverley Davidson out of the University of Iowa for about the past year or two. We have funded a couple of grants for her and Dr. Katz (who is based in Missouri). Most recently we have been working with Bev on a her Gene Therapy study to TPP1 Deficient dogs. In the past month or two we have had 2 very encouraging conference call updates with Bev on her progress and I wanted to share some of the exciting news.
Within the past couple of years Bev has successfully treated mice and been able to reverse some of the deficits caused by TPP1 deficiencies; with that result in hand the Blake’s Purpose foundation has funded the next phase of her trial where she is attempting to reverse the effects of the disease in afflicted dogs by administering the dog colony with her meds using a couple of different approaches to see what works best. The 1st dog was injected on April 30th and has been doing well, we are hoping to have some results in the fall regarding the dogs progress.
We hold so much hope for what Bev is doing and pray that she is one step closer, if not the answer to finding a cure for these children. Our most recent conversation with Bev was so encouraging; leading us to think that if all goes well with her current projects then the next step is to produce a clinical grade vector and try and get these meds to trial in LINCL children. This next phase of work will undoubtedly cost a lot of money/upwards of a million dollars which is another reason why we are trying to step up our fundraising. If not for hope, what do we all have?
We are gearing up for another round of fundraising around here! We locked in a date of November 5th for this years Golf Classic and are happy to be back in the swing of things. For any of you interested in participating please check back, we are doing some website updates and will have all of the information posted for the tournament soon.
I visited Blake in school last Friday and he made me a pot with some basil in it for Mothers Day. He was so super smiley and alert and I captured a few great photos. Two days prior he had a pretty hard seizure which we are just not used to experiencing. After a visit to our neurologist on Thursday he told us not to make any med changes as we are still pretty fortunate at the level of seizure control we are dealing with. 
So we are patiently waiting for the sunny California weather to hit us so we can heat up the pool and enjoy the sun. The water is one of Blake’s favorite things to do and very beneficial to his body. Blake seems to be at the same level he was a couple months ago. He has his good days and also his quiet days. I was with him in school today and he was activating the switches to the story his teacher Ian recorded. He did experience a seizure last week and they seem to happen every couple months. With that being said some battens children battle several seizures a day so up to this point we have made no changes to his meds. I am uploading a pic from today with Talia. She would jump all over Blakey if she could.
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.
