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Last month Julian turned 3 years old. He is babbling a bit, wears a brace on his one leg, still keeps that right hand clenched most of the time. The leg brace enables him to run somewhat, otherwise he can't.
Last week Thursday, he had his 3rd stem cell transplant, and was very sick afterwards, which did not happen the first time, but did last year, after the second transplant.
Here is the news I received.....
And the GREAT news is 106.8 million of his own stem cells were re-injected into Julian’s spine. That’s the 2nd highest number EVER in this clinical trial. They hope for 18-20 million and are absolutely ecstatic to have these results!
Unfortunately, Julian has been sicker than sick from the procedure. This morning is our first sign that he’s feeling better! He’s lost 5 pounds in about 2 days and has just been so very weak and nauseous. If you can imagine, not only was he sick in the hospital and hotel, but on the jetway, on the plane and as we tried to get through customs on Sunday afternoon. (But kudos to Delta flight attendants and Customs agents. They all went above and beyond to help us!!!)
It’s a difficult enough experience here in the United States, but being in a foreign country (Mexico)and all that goes with that (language, water, food, transportation, hotel, etc.…) adds an immeasurable amount of stress to the equation. Julian is one brave, determined little dude and my hero!
Once again, y’all rose to the occasion!! Thanks SO much to each of you for your notes, thoughts and prayers! They were definitely needed and more than appreciated!
Julian is always in my prayers, as he is still for many of you. He has therapy twice a week now, down from 3 times a week, has both physical and verbal. He hasn't had seizures in the past year, and so his meds for that have been really reduced. I think this the last of the stem cell thing......which has helped a lot. The first one was amazing the help it did, the second one took longer to see any noticeable effects, but they were there. So, will probably have to wait even longer this time. Thank you all again for all your prayers for this little boy.
(for those learning of Julian for the first time.......he had a stroke as he was being born, which resulted in him losing nearly all of the left side of his brain. They had no idea if he would walk, talk, even if he would see, or have to have a feeding tube all his life. )
Last week Thursday, he had his 3rd stem cell transplant, and was very sick afterwards, which did not happen the first time, but did last year, after the second transplant.
Here is the news I received.....
And the GREAT news is 106.8 million of his own stem cells were re-injected into Julian’s spine. That’s the 2nd highest number EVER in this clinical trial. They hope for 18-20 million and are absolutely ecstatic to have these results!
Unfortunately, Julian has been sicker than sick from the procedure. This morning is our first sign that he’s feeling better! He’s lost 5 pounds in about 2 days and has just been so very weak and nauseous. If you can imagine, not only was he sick in the hospital and hotel, but on the jetway, on the plane and as we tried to get through customs on Sunday afternoon. (But kudos to Delta flight attendants and Customs agents. They all went above and beyond to help us!!!)
It’s a difficult enough experience here in the United States, but being in a foreign country (Mexico)and all that goes with that (language, water, food, transportation, hotel, etc.…) adds an immeasurable amount of stress to the equation. Julian is one brave, determined little dude and my hero!
Once again, y’all rose to the occasion!! Thanks SO much to each of you for your notes, thoughts and prayers! They were definitely needed and more than appreciated!
Julian is always in my prayers, as he is still for many of you. He has therapy twice a week now, down from 3 times a week, has both physical and verbal. He hasn't had seizures in the past year, and so his meds for that have been really reduced. I think this the last of the stem cell thing......which has helped a lot. The first one was amazing the help it did, the second one took longer to see any noticeable effects, but they were there. So, will probably have to wait even longer this time. Thank you all again for all your prayers for this little boy.
(for those learning of Julian for the first time.......he had a stroke as he was being born, which resulted in him losing nearly all of the left side of his brain. They had no idea if he would walk, talk, even if he would see, or have to have a feeding tube all his life. )
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I love my tubie!!!
