Maddie Makes a Wish

[angel's momma]

I used to be a Children's Librarian, and kids older than Maddie used to think the Cat in the Hat was Dr. Seuss.

 

[Mom2M07]

Day #25: Maddie: "I want to do everything that my cousin Holly does"

"Cousin Holly" lives in FL and will be joining us on our last full day at the parks (Universal/IOA). Holly is 7 y/o, more than 48 inches tall, and loves thrill rides. We will NOT be doing "everything that Cousin Holly does"! If Maddie gets scared or overwhelmed, which she does quite easily, she'll swear off all rides for the rest of the trip.

 

[angel's momma]

There will be lots of stuff that she'll be able to do with Holly.

 

[Mom2M07]

Day #26: Maddie: "I want hugs. Lots of hugs."

(She's been in that kind of mood lately. Lots of medical appointments + new medical routines + mommy working late hours at work = a more clingy Maddie. Her hugs are truly the best, though!)

 

[Mom2M07]

Day #27: Maddie: "I want to meet Prince Charming."
Mommy: "Cinderella's Prince Charming or your own?"
Maddie: "The one that dances with Cinderella. I'm marrying Mia!"

(Mia is a girl that rides Maddie's bus!)

 

[angel's momma]

Day #26: Maddie: "I want hugs. Lots of hugs."

(She's been in that kind of mood lately. Lots of medical appointments + new medical routines + mommy working late hours at work = a more clingy Maddie. Her hugs are truly the best, though!)

Aw.

Day #27: Maddie: "I want to meet Prince Charming."
Mommy: "Cinderella's Prince Charming or your own?"
Maddie: "The one that dances with Cinderella. I'm marrying Mia!"

(Mia is a girl that rides Maddie's bus!)

 

[angel's momma]

 

[NEmel]

 

[Mom2M07]

Happy Easter everyone! Sorry for the lack of postings lately. I'm a bit overwhelmed with medical stuff right now. We have an important series of tests tomorrow morning and then an appointment on Tuesday to figure out what, if anything, needs to be done before our trip. Once I know what our plan is, I can adjust to whatever happens (or doesn't) and get excited about our trip again!

Four weeks from today!

 

[angel's momma]

Praying about the tests & appointment. Hugs for you

Yay for 4 weeks

 

[Mom2M07]

I'm back!! For those that haven't seen the update on the Wishtrippers thread, we've been struggling to control Maddie's hypoglycemia lately. Her levels in the morning, after fasting all night, are really, really low - dangerously low. So we've been waking her up throughout the night to feed her every few hours and running lots of blood tests to try to gain some understanding of what might be causing them. So far, we have no real idea, other than it's part of the mitochondrial disease. We can't really take any action until all the results come back, so we'll be sticking with our current plan (waking up at night to feed her Pediasure) until we get through our trip. After we're back, she'll likely be admitted and get a g-tube placed. I was very overwhelmed for a few days, which is odd, since this is BY FAR not one of the more difficult diagnoses we've had to deal with in the past 5 years. I just think the reality of having a disease that no one can do anything to treat, let alone stop from getting worse, hit me hard. But I've pulled myself together now and am back to being the normal "strong mom" that Maddie requires.

We have 24 days left and are counting down in a variety of ways: paper chain, countdown board, and daily surprise boxes. We're hoping to hear from our Wish Granters soon about having her party and getting all of our details. We still have no idea what times our flights are!

This trip is exactly what all of us need right now

 

[Mom2M07]

Day #28 - Maddie: "I want to fly on the plane all night long"

I, Mommy, hope that we have a brief, nonstop flight scheduled for us!

 

[angel's momma]

Lots of hugs & prayers Julie.

Your countdowns sound fun. Hope you find out your flight info & details, and about her party soon.

I hope you have a brief nonstop flight too.

 

[angel's momma]

In case this week gets busy & I don't post much, and don't get caught up before you leave once we get back, have a fantastic trip! I can't wait to read all about it.

 

[JWCJ]

It's been a few days so I thought I would pop in. I hope things are slowing down a little for you guys. Families like yours who face so much leave me in awe. You're such a strong momma

 

[Mom2M07]

Day #29 - Maddie: "I want to have a dance party on my trip"

 

[Lilfoot93]

I love your ideas for counting down for the trip! Hoping you get your flight times soon and get the date for your send off party!

Jackie

 

[angel's momma]

Day #29 - Maddie: "I want to have a dance party on my trip"

I hope you post lots of pictures when you get back - Maddie is going to have so much fun doing all of the things that you've been listing.

 

[Jessicalynne]

I love that she wants to have a dance party! Sorry to hear the hypoglycemia has been such an issue lately. My daughter has what is called ketotic hypoglycemia and her levels drop at night as well. Our doctors have us give her corn starch in milk at night to help get her through the long period of fasting. SOmething about how it takes longer to break down. Anyway... Good luck with everything!

 

[Mom2M07]

I love that she wants to have a dance party! Sorry to hear the hypoglycemia has been such an issue lately. My daughter has what is called ketotic hypoglycemia and her levels drop at night as well. Our doctors have us give her corn starch in milk at night to help get her through the long period of fasting. SOmething about how it takes longer to break down. Anyway... Good luck with everything!

It looks like we're dealing with ketotic hypoglycemia as well. Still waiting for genetics/metabolism to weigh in before we come up with a long-term plan. She drops at night due to fasting, but has also been periodically dropping during the day, while she's eating constantly. We're handling it all a bit better than we were a few weeks ago, waking up throughout the night to feed her, and thinking about our trip in 13 days!