Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[blessedmom4]

Hey Everyone!~!!
I feel like i may never get caught up but I wanted to give an update on Haylee. We FINALLY got to bring her home on Wednesday.

The epilepsy complications that lead to her intibation also lead to them deciding to put in a trach (they say she will probably only need it for the rest of the winter for easy access)

We ended up having to shut her brain completely off for 2 days to get the seizures to stop. Of course this lead to many othe r complications (to include issues with her heart and holding her boday heat)

She then ended up staying in because after her lungs were healed she cam down with pancreatitus. She is still battling it but they think it may be medication induced.

SOOO..
We went in on 3 seizure meds and a major diagnosis of CP and Epilepsy.
Came out on 17 meds with a trach, vent (onlyfor as needed!!) diabeties, chest PT vest, 2 nebs, 3 new seizure meds a j/g tube and a complete loss of movement (her head control and small use of hands started coming back today) and a nurse 12 hours a day.

It has been a long 5 weeks but I feel so blessed to have her home (well tired also) Now we just keep her well and let her heal and she should get back to her old self intime!!!

We were talking in the PICU and were so glad we had our Wish Trip when we did. The timing was PERFECT!!!

Thanks to everyone for the thoughts and prayers that have been sent to us!!

Renea, God Bless the entire family, I will be keeping you all in prayer. I hope the recovery is quick and uneventful. I am happy you had Disney Memories to help you remember the good times as you waited at the hospital. For me, getting lost in good thoughts sometimes helps me feel better. Haylee, I hope you feel stronger everyday sweetie!

Just wanted to let everyone know that we made it home late on Saturday. The flight was a little bumpy, but not to bad. Madison is doing pretty good. She still has the cough, but that is to be expected because of the asthma. Came home with a load of meds. Have to get an appointment with her immune doc her so she can do the follow up and put her on her new maintenance med. Dr. Freeman (doc at NIH) is changing her maintenance med and is supposed to call immune doc here. Should be an interesting call since she didn't even know we were going to NIH. Oh well I have to take care of my girl.
So we got home Saturday evening after the unexpected long stay at NIH and while we were at Awana (a church program) last night Madison fell on some black ice and hurt her leg. She keeps telling me it is ok, but she is walking with a limp. Going to see how she does today at school and may be taking her to get it xrayed when she gets home. With her high tolerence for pain I am a little concerned that there actually may be something wrong. We will see.
Thanks and hugs to everyone who keeps her in prayers.

I am so happy you are home; however, sad that Madison hurt her leg. I will pray that it is nothing major. Lisa walked around with a "slight chip" to her foot for two days before the doctors finally decided it might be broken...These kiddos DO learn how to turn off the pain. Praying today is a good day for her...and you!

 

[casper_jj11]

I have been reading a lot of the trip reports and seeing the pictures and am wondering what are the Panama Jack shirts?

These shirts are given to the family in their welcome package from GKTW on arrival ... at least that's when we received ours.

Hugs going out to all the families with little ones coming home from the hospital and those waiting for their little ones to go in. My thoughts and prayers go out to all of you.

 

[casper_jj11]

For Judy, Kristy and any one else interested, they've reopened my TR and I just posted day 2 of our trip - Epcot!

 

[blessedmom4]

For Judy, Kristy and any one else interested, they've reopened my TR and I just posted day 2 of our trip - Epcot!

OOOHHH YEA!!! I need something to distract my mind this morning as I wait for Lisa's cardiology appointment...I am going over to enjoy, THANK YOU for letting me know!!!

FYI for anyone interested...if you need a little smile lifter, visit Lisa's PTR for a past, Pixie Dust moment...with a photo.

 

[fulseasmama]

First off many of you and your children are having some really hard and painful health issues right now. My thoughts are with you and I hope all are better soon. Kids really deserve childhoods minus all this medical stuff...hopefully someday that can be a reality.

So in about 17hrs (not that I am counting) a limo will be here to pick us up to take us to the airport. Yahoooo!!!!! Just wanted to say a quick and heartfelt thank you to everyone here who has answered my planning questions, stopped by our PTR and has done PTR's and TR's for me to follow and learn from. Also a special thanks to all who participate in the Big Give and ours specifically...it has been an amazing and wonderful experience. The kids can't wait to play with the new treasures on the plane and wear all the lovely new outfits. I can't say thank you enough for everything. We are excited and I can't wait to have a few weeks of vacation and fun with my family. Thanks again for everything...I'll be checking back in and starting a TR when we return.

 

[casper_jj11]

First off many of you and your children are having some really hard and painful health issues right now. My thoughts are with you and I hope all are better soon. Kids really deserve childhoods minus all this medical stuff...hopefully someday that can be a reality.

So in about 17hrs (not that I am counting) a limo will be here to pick us up to take us to the airport. Yahoooo!!!!! Just wanted to say a quick and heartfelt thank you to everyone here who has answered my planning questions, stopped by our PTR and has done PTR's and TR's for me to follow and learn from. Also a special thanks to all who participate in the Big Give and ours specifically...it has been an amazing and wonderful experience. The kids can't wait to play with the new treasures on the plane and wear all the lovely new outfits. I can't say thank you enough for everything. We are excited and I can't wait to have a few weeks of vacation and fun with my family. Thanks again for everything...I'll be checking back in and starting a TR when we return.

Woo Hoo!! Have a wonderful trip! I can't wait to read all about it!

 

[kailatilear]

Abby finally went back to school today after beeing off the past week due to the compression fractures in her back. She was so excited to finally go back and see her friends and not have to sit in the house all day being bored. She has tons of make up work, which I picked up for her last week, however, I will be honest and say that we have not gotten very much done. It is so much that it is very overwhelming to her and myself. I told the teacher when I took her this morning that we haven't gotten very much done and she was fine. She just said to take our time, she didn't want to have Abby overdo it, especially with the trip coming up

Thank you to everyone here for all your thoughts and prayers for Abby and our family. I too am praying for all the sick little ones out there, I know how overwhelming it is and I just want everyone to know that you are in my thoughts and prayers.

I cannot believe we are 23 days away

 

[MitoDadMO]

We finally got our dates! Disney here we come!! I have already made reservations for Chef Mickey for breakfast, Pirate League, and Wish's Firework Dessert Party.....all on the same day!!

 

[tinytreasures]

We finally got our dates! Disney here we come!! I have already made reservations for Chef Mickey for breakfast, Pirate League, and Wish's Firework Dessert Party.....all on the same day!!

yah for dates
when are they?

 

[4monkeys]

First off many of you and your children are having some really hard and painful health issues right now. My thoughts are with you and I hope all are better soon. Kids really deserve childhoods minus all this medical stuff...hopefully someday that can be a reality.

So in about 17hrs (not that I am counting) a limo will be here to pick us up to take us to the airport. Yahoooo!!!!! Just wanted to say a quick and heartfelt thank you to everyone here who has answered my planning questions, stopped by our PTR and has done PTR's and TR's for me to follow and learn from. Also a special thanks to all who participate in the Big Give and ours specifically...it has been an amazing and wonderful experience. The kids can't wait to play with the new treasures on the plane and wear all the lovely new outfits. I can't say thank you enough for everything. We are excited and I can't wait to have a few weeks of vacation and fun with my family. Thanks again for everything...I'll be checking back in and starting a TR when we return.

WOO HOO!!! HAVE A BLAST!!!

 

[LindaBabe]

With Lhea's trip not until April I thought we had plenty of time to schedule a character meal. However when I was looking it up tonight it seems they are all booked up for the times/days/place we wanted. Lhea's wish was to dance with princess Tiana but Tiana isn't in any character meal. So I thought she would still enjoy just eating in the castle but couldn't find anything. Should I keep searching and maybe try somewhere else or change to another day. It still might not work out since we are going at spring break. How nice are these meals? Is it worth all the effort? Will she be just as happy if we just make sure she gets to meet all of the princesses in the park? Any advice is appreciated.

YES! And if you meet the princesses at their greeting spots, you will probably get BETTER interaction than at the meals! The meals are NOT worth the effort in the old lady's opinion - the kids are so excited they barely eat all they're interested in is the characters - so why not go direct for the characters? Tiana is absolutely charming, and Prince Naveen is usually with her.

I FINALLY found some times/days that would work w/ our schedule...I have booked Akershus for my girls on Saturday, Mar. 5 at 3pm. They did not have breakfast available for any day or time. I figured I'd book it while it was available and I can cancel if something else becomes available.

I also booked a breakfast for Cape May Cafe on friday, Mar. 4 @ 1015am...it's a character dining w/ Minnie, Goofy and Donald Duck. All 3 are fav's around here (well- ALL Disney Characters are fav's). I haven't heard any of you talk about the restaurant...Anyone have anything to share regarding Cape May Cafe? I am curious...both of these restaurants are in Epcot apparently and One is going to have to go...but they want to see Minnie & Goofy and Chef Mickey is competely booked.

In the past, Cape May has had the best breakfast available and the character interaction has been good. I haven't been there for a year or so but last time, it was Minnie, goofy, pluto, Chip and Dale. As someone else said, Cape May is in the beach club. - If you're driving from GKTW, you can park in the lot at the BC, easily or valet for free if you have a hangtag.

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Have any of the kids received their post cards yet? I mailed them in Disneyland a week ago Friday and sure hope they did not sit in the mail box for a week. Can't believe I couldn't find them when at WDW

Be well - stay well, everyone!

 

[MitoDadMO]

mar 16-22

 

[jj0plin]

Have any of the kids received their post cards yet? I mailed them in Disneyland a week ago Friday and sure hope they did not sit in the mail box for a week. Can't believe I couldn't find them when at WDW

Be well - stay well, everyone!

I was wondering when you'd get back! I hope you had a fantastic vacation!

Elliot received his postcard... both he and Addison LOVE it!! It's hanging on the fridge and they are constantly taking it down and looking at it. Thank you so much for doing it!

 

[Mom2mitokids]

Kylee is in the hospital again. She is here for a cleanout, but now caught some bug and has a 102 fever.

 

[luvmygrlz3]

Thank you for the info!!! I'm hoping Minnie will be there...my kiddos love her and that's Khelsey's theme for her birthday party for Sunday!

When You said that coming from GKTW and headed to Cape May Cafe, to park in BC? What/where is BC? I'm a newbie to DW so I am lost... Sorry!

 

[Manymosi]

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Have any of the kids received their post cards yet? I mailed them in Disneyland a week ago Friday and sure hope they did not sit in the mail box for a week. Can't believe I couldn't find them when at WDW

Be well - stay well, everyone!

Yes! Wendy got hers yesterday and she LOVES the Tinkerbell card! Thank you for doing that.

 

[tinytreasures]

Kylee is in the hospital again. She is here for a cleanout, but now caught some bug and has a 102 fever.

Ohh no prayers she recovers quickly

 

[jj0plin]

Kylee is in the hospital again. She is here for a cleanout, but now caught some bug and has a 102 fever.

oh no I hope she gets to feeling better fast!

 

[jwallaceent]

Welcome Jennifer -- I am going to assume you are somewhere in the Northern Virginia area - we are in Alexandria,VA. I have 3 teenage boys = 17 almost 18 - 11th grade and twins who are 13 to be 14 in March and in 7th grade. All 3 of my boys have a genetic metabolic disorder - a mitochondrial disease - all affected differently. Clay - the most medically fragile of the 3 boys had his wish 9 years ago. Jake's wish starts this Friday - he wanted to go to Disney (he has been there and it is the happiest place on earth per him) and have a date with the princesses. Cole - the other twin just got a call his wish will be granted this summer - a Medeterrian cruise.

Your family is beautiful and I will whole heartedly agree that we have 3 amazing medical centers in this area for our children - Childrens (where all our doctors are now) - Georgetown where my GI is and John Hopkins who took care of my boys for many years.

Thank you for the warm welcome...yes we are just east of Fredericksburg. I will keep your family in my prayers...who is your GI doctor at Georgetown? We see Dr. Kaufman(the BEST) and Dr. Little(Great too)!

I can not wait to hear how your trip goes....we have never been to Disney and have no idea what to expect! Brooke is so excited she asks every day we leaving yet?

I hope to stay in touch...all the best!

 

[syammt]

Kylee is in the hospital again. She is here for a cleanout, but now caught some bug and has a 102 fever.

So sorry to hear that. Praying for a quick recovery.