Celebrating Kidney Function PTR -- 2 more days until we leave and SICK KIDS :(

[sisaaliyah]

Hi there! Just came across your pre-trip report and having a child with a Kidney problem the title caught my eye. DS is 4 and has MCDK. He was diagnosed 20 months ago and it took about 15 months before that of going to different doctors until they discovered both his kidneys never fully developed and are small with cysts. It's our job now just to keep him growing and the longer he can keep his own kidneys the better.

Your daughter in her mickey mouse costume is absolutely adorable! Hope you have an AWESOME trip. All your planning will pay off. We'll be heading down the day after Thanksgiving, and grandma's going with us this time.

 

[erika412]

Hi sisaaliyah. Thanks for stopping by! I'm sorry that my title caught your eye for personal reasons. Megan will eventually have to deal with a transplant as well in the nephrologists opinion, but it could be years from now. Right now she's doing very well actually. She had post infectious nephritis, but a pretty bad case of it and they do expect there will be some scaring. She's having an ultrasound in January and I'm pretty nervous about that. Her blood pressure has been improving and her latest echo showed signs of improvement too so hopefully the u/s will as well.




The shirts I had made for the girls arrived today:

The picture quality isn't that great since I took it with my phone, but they are adorable and I'm so happy with them.

Shannon, in true middle child form, is a little pissy that her shirt didn't say anything, but I explained to her that this trip is because of everything we ALL had been through with Megan's illness and we're celebrating that she's healthy enough to go and that we're all together. (holy run-on sentence)

I finished the pressed penny money rolls and the covers on the wet-ones. This weekend I'm starting the shirts. And hopefully finishing them!

 

[erika412]

Here are some pictures of some of my creations. I made these with a lot of help from the very talented people on the Disign board.

First a countdown chain: Not too much longer!!!!!

Next a countdown chain for the trip there. 50 miles equals one ring of the chain. We have one for the way there and one for the way back.

Pressed penny containers:

Wet One Containers: (we have to be obsessive about handwashing/wiping because of Megan's allergies. If we have dairy on us and touch her, she will get hives.)

Disney Trip Journal. I saved this a while ago from Mousesaverrs (I think), but I would have much rather had one from here. Next time

 

[erika412]

Autograph Books. I did the covers, can you tell? This was part of what Staples messed up.

Some sample pages.

And the other part of Staples mess up was the dedicated Fairy autograph books:

Even with the problems with Staples, I'm so excited to use everything!!!

 

[erika412]

I now have ink again. But we have a Halloween party this afternoon so the shirts are going to have to wait.

Megan is going to wear her Minnie costume and Shannon is wearing her Belle dress that I bought for the trip. She was going to wear her 50s skirt I got her for the 50th day of kindergarten for Halloween, but has recently decided she wanted to be a princess. I can't say no to that! Although it is a little annoying because I think the 50th day of Kindergarten is now going to fall when we are gone! Oh well, I rather be in Disney World!!

 

[erika412]

Here are some pictures of the preschool Halloween party. As you can tell, Megan didnt end up wearing her Minnie Mouse. She had it on for about 10 minutes and then wanted to take it off before we left. I decided to try the "Cinderella" dress we got for the trip. She was so happy so she wore it there.

In the first pictures, behind her is a cardboard cut out of Cinderella. They also had Mickey, Minnie, Pooh and a couple others. Throughout the party, she'd pick them up and bring them to me. I thought it would be fun if she had her picture taken with Minnie. She decided to lean on Minnie instead.

Shannon was wearing Belle like I said and in her pictures, I made her say "Beautiful Belle!" It didn't quite make her smile. LOL

Mary went with Brian to pick out her costume. She came home with a Star Wars thing-a-ma-jig. She thinks she's Princess Leia. We went with it.

We are leaving in 11 days!!!!!

 

[erika412]

Bringing this over from page 3. Completed Items are photographed on page 3 if applicable.

To Do List

• print and iron on transfers on 8 tshirts. Probably need to wash shirts first? SHIRTS WASHED
• Laminate (done) stroller tag and hole punch.
• Also need to clean pack and play.
• Buy glitter hair spray

Done

• Get all books (6 autograph books, 2 journals) covered and bounded at Staples.
• cut out tinkerbell tags
• Find shipping box and send DVDs to be fixed (done on 10/19 to track)
• Put adrs in iPhone app
• Figure out paging for third main autograph book
• Print covers for all three main autograph books
• Finish Fairy autograph book layout and print
• Check on fairy cover request
• Cut out mileage countdown chain links and assemble.
• Put on pressed penny covers.
• Print and put on wet-ones covers.
• Print driving maps for the girls

 

[erika412]

Another to do. One of the Dis Dad's put this idea in to my Dh's head. A present for each state crossing. So, shopping I go.

 

[erika412]

I have bronchitis. Hoping everyone else stays healthy.

8 more days until we pile into the van and go!!

 

[erika412]

I made Megan a tutu last night.

We're leaving Friday. And my nephew with whom we carpool just came down with the flu. AUGH!!!!!! Mary, Shannon and I just got h1n1 shots today. Hopefully we can stay healthy.

 

[erika412]

Two more days!!!!!

And I've had Megan sick with a cold all week. We were at the pediatrician today. Chest Xray was clear. She gave us an rx for tamiflu because of Megan's exposure to my nephew. If it wasn't for her kidneys, she wouldn't have gotten it. The kidney doctor freaked a bit and wanted her on it.

So, Megan is on the mend. I'm feeling good about the trip. She'll be protected from the flu while we're down there. We get clearance from the nephrologist and the pediatrician to take her. Things are looking good.

Then at 2:30pm, I get a call. Shannon has a fever. 100.8 please come get her. I get her, she's warm. I give tylenol. It brought the fever all the way down again. She's playing happily and hyperly as always.

Things are good.

For now.

 

[dvczerfs]

great ptr mrs. middlepat!! cute girls!!! i wish mine were still little. have a nice trip!!!