Cade's Wish Trip Pre-Trip Report

[Momtokcc]

I just thought I would do a little update on Cade. Last week he had an appointment with his immunologist. He was able to have a break from his IVIG infusions over the summer so that we could retest his immune function. At his appointment last week he had blood drawn to do that. His summer was great - no infections! We should find out the results at the end of this week, possibly next week.

Next week he has an appointment with his GI doctor. We haven't seen her since we officially found out that the growth hormone treatments didn't work for him, despite the fact that he his growth hormone deficient. I don't know if that is going to change her ( or his nutrionist's) thoughts on what his weight goals should be or what his feeding schedule should be. He is 100% tube fed.

School started this past Monday and we have a good routine going. He has the same aide helping him as last year. He doesn't need her all the time - but always has her at PE and other times as needed. There is a new school nurse this year, I was a bummed b/c we LOVED our nurse from last year but the new one is really sweet. She called the house on Monday afternoon just to see how his day went. I think it with be a good year with her, you can tell she really cares.


Here is a picture of Cade during his blood draw last week. He is so used to these, they just don't even phase him.

 

[Momtokcc]

We got some great health news this week. The test results came back from the blood that was taken at Cade's last immunology appointment. They tested his IG levels and also his titers. He had an increase this time! Since he has been doing so well AND had an increase his immunologist is going to let him do prophylactic antiobiotics instead of IVIG infusions every 4 weeks. If he does well, he will get to continue. Of course if he starts to get a lot of infections, he will have to go back to the infusions. He was pretty happy about it.

It looks like I may definately have to find a hat for Cade - it looks like his hair is starting to fall out again. I am bummed. It has been 2 years since it happened before.

I am really trying to plan our trip now. Today I made a list of the things we really want to try to do at each park. We have decided that we definately are going to go to Legoland. Cade is such a Lego fanatic, I know he will love it. As soon as I get the itinerary complete, I will post it. I have my sister helping me, she is full of great tips!!

 

[blessedmom4]

We got some great health news this week. The test results came back from the blood that was taken at Cade's last immunology appointment. They tested his IG levels and also his titers. He had an increase this time! Since he has been doing so well AND had an increase his immunologist is going to let him do prophylactic antiobiotics instead of IVIG infusions every 4 weeks. If he does well, he will get to continue. Of course if he starts to get a lot of infections, he will have to go back to the infusions. He was pretty happy about it.

It looks like I may definately have to find a hat for Cade - it looks like his hair is starting to fall out again. I am bummed. It has been 2 years since it happened before.

I am really trying to plan our trip now. Today I made a list of the things we really want to try to do at each park. We have decided that we definately are going to go to Legoland. Cade is such a Lego fanatic, I know he will love it. As soon as I get the itinerary complete, I will post it. I have my sister helping me, she is full of great tips!!

CONGRATULATIONS on such FABULOUS NEWS!!!!! I hope he does well. For the Hair loss though!

 

[maroo]

FANTASTIC news!

We give IVIG infusions at our office - so I know they are a pain!

Sounds like he is doing better! That is fantastic!!!

 

[Lilfoot93]

What wonderful news!

Jackie

 

[Emmaswishtrip]

We got some great health news this week. The test results came back from the blood that was taken at Cade's last immunology appointment. They tested his IG levels and also his titers. He had an increase this time! Since he has been doing so well AND had an increase his immunologist is going to let him do prophylactic antiobiotics instead of IVIG infusions every 4 weeks. If he does well, he will get to continue. Of course if he starts to get a lot of infections, he will have to go back to the infusions. He was pretty happy about it.

It looks like I may definately have to find a hat for Cade - it looks like his hair is starting to fall out again. I am bummed. It has been 2 years since it happened before.

I am really trying to plan our trip now. Today I made a list of the things we really want to try to do at each park. We have decided that we definately are going to go to Legoland. Cade is such a Lego fanatic, I know he will love it. As soon as I get the itinerary complete, I will post it. I have my sister helping me, she is full of great tips!!

Congratulations on your break from IVIG! My daughter Emma gets it as well! Hoping one day we get to stop also! Can't wait to follow your amazing adventure!

 

[carebearkidney]

Yay on the big news to stop infusions!
Keep it up Cade! What a fighter!

 

[Mama2Josh]

Congrats on the infusion news!!

I just wanted to drop by and say hi! My son Josh is also have a wish granted to go to WDW, but we are still waiting on dates. Looks like we will be there either the same week as you or the week after! It's nice to know I'm not the only one freaking out about planning. ;-)

I hope things continue to go well for you guys and have a great trip!!!

Tara

 

[Momtokcc]

We are really counting down the days now!! Saturday we got a letter from GKTW - I think Cade is really getting excited about it now. He doesn't show too much emotion so I will take anything I can get!! I can't wait to go make memories - our family has never been on a vacation...I can't believe it is really happening!

 

[blessedmom4]

Hope it was magical!

 

[blessedmom4]

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