Cranky today!
Johnathan is a cranky boy today! No doubt this is exhausting for him and he is not at home!
Today he got his results for comprehension and speech- 4 yr 8 months
His sight is perfect
And he did his swallowing test which was fine
Friday he does:
MRI
high frequency hearing test
Spinal tap
Skin Biopsy
His Doctor said that he is doing so well and it makes this trial participation even more important.
March 31, 2010
Shagg Salon in Gilroy
Yesterday i went to get my hair cut with Heather at Shagg Salon.... If you haven't been there it's amazing! Everyone there is so very sweet and the salon is awesome.
The salon has been such a wonderful support to Johnathan. Not only have they offered Becca private services because they know how tough life has been for her, Heather told me if I get a box together they will try and get donations for Johnathan's Disney trip! How wonderful is that?!?
So if you are looking for a new stylist check them out! Or if you have been to Shagg and love it, go to yelp and leave them feedback! www.yelp.com
The salon has been such a wonderful support to Johnathan. Not only have they offered Becca private services because they know how tough life has been for her, Heather told me if I get a box together they will try and get donations for Johnathan's Disney trip! How wonderful is that?!?
So if you are looking for a new stylist check them out! Or if you have been to Shagg and love it, go to yelp and leave them feedback! www.yelp.com
Hearing test done...
His hearing is perfect- NPC takes that too I guess :(
He has met with the doctor and so far they see nothing that would indicate he has this other than the liver and spleen issues. It's hard to believe it's true because of that. He seems so perfect.
I think he has his sight checked tomorrow and then Friday is the big day where he will have to be sedated and things like a spinal tap and skin biopsy are done. If everything goes smoothly they will be home this weekend. If not they have to stay until he is well enough to fly. Fingers crossed my baby comes home this weekend.
They are also running blood tests on Becca and Keith for the study.
Apparently Johnathan is having a blast and wearing out his folks! LOL! The "hotel" is for children with illnesses and is set up wonderfully Becca said. Play areas, video games, meditation room, gym, a kitchen with pantry areas for each family. Sounds wonderful and I hope that makes it easier on them. it sounds like it is thankfully.
I just want them home... Having nightmares and my first night terror in almost 2 years (someone was taking Becca and I got up screaming). *sigh* Not a good day for me. I don't do well when I feel helpless and can't help them. I am especially having issues being away from becca. I miss my baby.
Think good thoughts for them.... night
He has met with the doctor and so far they see nothing that would indicate he has this other than the liver and spleen issues. It's hard to believe it's true because of that. He seems so perfect.
I think he has his sight checked tomorrow and then Friday is the big day where he will have to be sedated and things like a spinal tap and skin biopsy are done. If everything goes smoothly they will be home this weekend. If not they have to stay until he is well enough to fly. Fingers crossed my baby comes home this weekend.
They are also running blood tests on Becca and Keith for the study.
Apparently Johnathan is having a blast and wearing out his folks! LOL! The "hotel" is for children with illnesses and is set up wonderfully Becca said. Play areas, video games, meditation room, gym, a kitchen with pantry areas for each family. Sounds wonderful and I hope that makes it easier on them. it sounds like it is thankfully.
I just want them home... Having nightmares and my first night terror in almost 2 years (someone was taking Becca and I got up screaming). *sigh* Not a good day for me. I don't do well when I feel helpless and can't help them. I am especially having issues being away from becca. I miss my baby.
Think good thoughts for them.... night
March 29, 2010
Thanks you...
I am really tardy about sending out thanks you so far. BUT honestly I have thought about those who have already donated and I haven't forgotten! i will get them out I PROMISE! And I think of you often and how kind you are.
I am going to work hard to help get the birthday thank yous out too! Because we are all honestly SO SO SO very grateful for all the love and support! It really has made this horrible situation bearable!
I am going to work hard to help get the birthday thank yous out too! Because we are all honestly SO SO SO very grateful for all the love and support! It really has made this horrible situation bearable!
It's so quiet- They are safely in D.C.
Johnathan and his parents arrived safely in Washington DC this afternoon. I miss them already :(
They are out there so that Johnathan can participate in the Natural History Study. I am pretty sure this is the correct link to the study but will edit later if not.
He will be getting a baseline before he starts his new medication- Zavesca(R) (miglustat). He will start that when he gets back and we are praying that not only it slows the process of the disease down until we find a cure, but that he has little to NO side effects from it.
This week Johnathan will be getting many different tests done to see where he is at. This is for the trial use so when he gets back his own doctors will also be doing tests later in April.
I am hoping things go smoothly out there and J doesn't get too upset from all that :(
And I am thinking of his folks :'(
They are out there so that Johnathan can participate in the Natural History Study. I am pretty sure this is the correct link to the study but will edit later if not.
He will be getting a baseline before he starts his new medication- Zavesca(R) (miglustat). He will start that when he gets back and we are praying that not only it slows the process of the disease down until we find a cure, but that he has little to NO side effects from it.
This week Johnathan will be getting many different tests done to see where he is at. This is for the trial use so when he gets back his own doctors will also be doing tests later in April.
I am hoping things go smoothly out there and J doesn't get too upset from all that :(
And I am thinking of his folks :'(
Umm.. So WHO are you?
I am Johnathan's "auntie Lucy" who will most likely be doing most of the posts. I am Becca's sister Kimberly (why do I go by Auntie Lucy? Ask Johnathan's daddy ;) and since the day this little man has been born I just kind of took over updating people online. Later I will add old blogs I wrote when Johnathan was a newborn in the NICU.
I am sure Becca will post a few things but she calls me her "PR person" and asked me to do this. She fires me often though and it's well deserved! LOL!
I wanted to make a small note for those that don't know maybe... Becca has been a fighter her entire life. In kindergarten she was diagnosed with a severe case of dyslexia. So much so she wrote every single letter backwards AND wrote right to left instead of left to right. For many years i was the only one able to read her writing and interrupt it for others. She qualified for disablity but Becca knew she could work hard and fight so she never did.
Over the years with a lot of help Becca has made huge leaps with her spelling and her writing. But she has had to work 10x harder than i did to get there. Even with a learning disability Rebecca has always been very bright. It's just getting things down on paper that is a struggle to this day. I can't tell you how amazed and proud I am of her. She went on to get her CNA and then went to become an amazing phlebotomist. To achieve those things she had to continue to work much harder than others. She has come so far and many people don't even know any of this about her.
But she still has her demons when it comes to this and because of that she doesn't enjoy blogging, emailing or journaling more than a paragraph or two and s really self-conscious. So that's where I come in. We think along the same lines and i am able to get it out there for her. And I do enjoy blogging as i am very long winded ;)
Now that doesn't mean you wont see many spelling errors or typos from me! LOL! Go ahead and let me know if they are a hige deal so i can correct them. Otherwise just giggle to yourself ;)
I am sure Becca will post a few things but she calls me her "PR person" and asked me to do this. She fires me often though and it's well deserved! LOL!
I wanted to make a small note for those that don't know maybe... Becca has been a fighter her entire life. In kindergarten she was diagnosed with a severe case of dyslexia. So much so she wrote every single letter backwards AND wrote right to left instead of left to right. For many years i was the only one able to read her writing and interrupt it for others. She qualified for disablity but Becca knew she could work hard and fight so she never did.
Over the years with a lot of help Becca has made huge leaps with her spelling and her writing. But she has had to work 10x harder than i did to get there. Even with a learning disability Rebecca has always been very bright. It's just getting things down on paper that is a struggle to this day. I can't tell you how amazed and proud I am of her. She went on to get her CNA and then went to become an amazing phlebotomist. To achieve those things she had to continue to work much harder than others. She has come so far and many people don't even know any of this about her.
But she still has her demons when it comes to this and because of that she doesn't enjoy blogging, emailing or journaling more than a paragraph or two and s really self-conscious. So that's where I come in. We think along the same lines and i am able to get it out there for her. And I do enjoy blogging as i am very long winded ;)
Now that doesn't mean you wont see many spelling errors or typos from me! LOL! Go ahead and let me know if they are a hige deal so i can correct them. Otherwise just giggle to yourself ;)
Well it's about time!
I have been wanting to start this blog but been way overwhelmed since the 9th.
This blog is dedicated to updating friends, family and anyone interested in Johnathan and our fight to save him.
On March 9th 2010 (weeks before his 4th birthday) Johnathan was diagnosed with Niemann-Pick type C.
His family and our community have taken on this battle to save our beautiful little boy and this will most likely be his story....
This blog is dedicated to updating friends, family and anyone interested in Johnathan and our fight to save him.
On March 9th 2010 (weeks before his 4th birthday) Johnathan was diagnosed with Niemann-Pick type C.
His family and our community have taken on this battle to save our beautiful little boy and this will most likely be his story....
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