Just an update

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...

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

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!

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!