Johnathan's Fight

Just an update

2010-04-14T20:02:00.001-07:00

So Johnathan upped his medication this week and again had diarrhea. Poor kid. I think it will happen every time we up the dose. Luckily he does adjust so it will be a process. He goes to 2x a day next week... He has been cranky and sleepy and we think it's the meds.

We have the garage sale this weekend and are hoping to get at least $200 so the trip will be covered (minus food & gas). I think we can do it!

Johnathan's dog thinks he's Becca's dog. Shadows her everywhere and pouts and whines when she is gone. Luckily Johnathan is ok with his mama having two babies and he still feels the dog is *his*. He says, "he is the luckiest boy in the world because he has a dog!" :D

I have the website up and running for the post part
www.johnathanspencer.org
Lots of errors and a ton more to add but at least it's no longer ugly! LOL!
I added another one of my email addresses so if you see kdmama that's me.... I also add Becca and so she may add posts too I hope!

Thanks for reading :)

Johnathan's new best friend...

2010-04-10T01:18:00.000-07:00

So Johnathan has been wanting a dog for a while... He asked again for his birthday and HOW could I say no? I don't need another thing to care for but he has me wrapped around his little finger! And the kicker is that when his mom is around he is mean to me! LOL! When she is not around I am mama and he loves on me but she's always around now so I have gotten headbutted twice in the nose this month! LOL! No he isn't that mean... He just likes to get my goat and play mean to me.

So anyway we adopted a small black dog today who is so sweet! He was a stray and you have to earn his trust because he is timid and shy. But SOOOO cute!! I call him Buggy because he's a cuddle bug! :) So far he is in love with Becca but I plan to change that mwahahahahaha!

Johnathan loves him! Lets see how long the newness lasts! LOL!

And so it starts

2010-04-08T23:22:00.000-07:00

Johnathan started his medication this week....

Honestly? He gags and Becca said it was the WORST thing she has ever tasted. But man he is a trooper! Landon (my youngest) would never do as well as he has been doing! Amazing what an awesome little boy he is!
I made a chart and he puts a sticker on it daily... He is excited because at the end of this week he get s prize :)
I don't know how well he will do when we go to 2x a day though.
As far as side effects he has diarrhea :( Luckily not bad enough to put him in diapers but we were warned that could happen.

We met with the local paper this week too. They are going to run a story on April 23rd i think. They are also going to have the photographer follow him to his next appointment.
I need to get a non-profit started but I am entirely overwhelmed by the though *sigh*

Tests are done!

2010-04-02T18:23:00.000-07:00

Yay!!! No more tests... for now.

Johnathan did really well with all his tests. We haven't gotten back all the results but they look good from the ones we have seen. The Doctors said they normally get kids in after they are showing a lot more signs so hopefully his participation in the study will be of great use.
The only neurological sign they could find had to do with his hearing. It's not damage but how the brain processes hearing. Progressive hearing loss also happen with NPC. This disease is horrible!!! What doesn't it steal from these babies?!?!? Really???

But on to better news... They are coming home tomorrow! I am so happy!! I have missed my baby! and he misses his bro-bros and sissy LOL!

Tests Today

2010-03-31T14:19:00.000-07:00

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.

Shagg Salon in Gilroy

2010-03-31T13:40:00.000-07:00

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

Hearing test done...

2010-03-31T00:10:00.000-07:00

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

Thanks you...

2010-03-29T17:14:00.000-07:00

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!

It's so quiet- They are safely in D.C.

2010-03-29T16:59:00.000-07:00

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 :'(

Umm.. So WHO are you?

2010-03-29T16:54:00.000-07:00

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 ;)

Well it's about time!

2010-03-29T16:41:00.000-07:00

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....