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 :)
April 14, 2010
April 10, 2010
Johnathan's new best friend...
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!
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!
April 08, 2010
And so it starts
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*
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*
April 02, 2010
Tests are done!
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!
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!
March 31, 2010
Tests Today
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.
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
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
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