Discussion in 'disABILITIES!' started by maroo, Mar 23, 2013.
Hugs to all of you! I am hoping for some good numbers soon and a cooperative LP recovery.
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Prayers coming your way.
So stressed.....we leave two weeks from okay and jack has a temp. Tummy ache and headache. He has been sick for the last few weeks. First strep now some virus. Please send prayers that he gets healthy and we are healthy for our trip. We have his send off party this weekend too. I am so stressed. Hopefully he ill bounce back quickly!
Thanks for the good thoughts, everyone. It was a long day, but she was in great spirits when we got home. I think the low neuts just rattled me - She's been perfectly fine, so I wasn't expecting it. All other counts came back normal, so hopefully with a week off her meds she'll bounce back quickly. Other than being stuck at home with me instead of school, where she'd rather be, lol!
Healthy vibes Jack's way!
MAW is arranging booster seats with our rental car company. I don't know if I would trust a rental carseat, but I think a booster should be fine.
How'd things go for you?
Jo - Praying Ja's ANC recovers quickly. Hugs for you.
Julie - Praying for Maddie's results Hugs for you too
Victoria - So sorry Jack is still sick. Praying for him, and that your family is healthy for the trip. I hope he has a wonderful party this weekend. Sorry you're so stressed, praying you'll have peace of mind. Lots of hugs
Not great, but thanks for asking! Right now, we are waking Maddie up throughout the night to feed her in order to keep her blood sugars stable. It's exhausting for us all and she's barely awake enough to safely eat. She had a bunch of labs done to see where the hypoglycemia is coming from, but the results weren't all back yet (at our appointment). We have two options right now: either keep doing what we are doing, get through our trip in 4 weeks, and manage any crises as they come up or hospitalize her on overnight IV and/or ng-tube feeds until the rest of the results come back (which could take weeks). I'm not going to keep her in the hospital indefinitely, waiting for results to come back, so we'll keep waking her up and feeding her throughout the night. Unless the tests show something clear and treatable (which never happens in our world!) Maddie will likely end up with a g-tube shortly after returning from Disney. We also found out that her growth hormone levels are low, so will need to do more testing on that issue as well. I am overwhelmed and frustrated, but trying to stay focused on getting through the next few weeks and enjoying our trip!
Hello Everyone! Ok so I am new to the boards so please bear with me!!! I have been checking out the boards and am really excited to begin the pre trip report and everything...I am just overwhelmed with emotions We are a family of 5 (3 girls ages 11, 9, 4....2 older girls are my soon to be step daughters!!!!!!!!). Our little princess (Jerzey) that is 4 was born with multiple heart conditions. She has had 4 open heart surgeries and a diaphram surgery due to complications. Being granted this wish is absolutely amazing! This is something that we could never do with our girls in a million years. But I seem to still get a wave of emotions that come over me when I think of all that we have had to endure these last few years and how it is great to be going and at the same time sad cuz of why we are going....does that make sense? I am sure I am just having a moment! LOL I think having these boards will really help me thru all of it
Anyway our trip has been scheduled for Nov 25- Dec 1, 2013!!!! We leave for Disney 2 days after Allen (girls' dad) and I get married! What an amazing trip it will be I am kinda nervous about it being over Thanksgiving but should be fun. My parents also get to tag a long with us which is just wonderful since they have been our rocks thru our Heart Journey so far!!!
As for Jerzey, the docs hope she won't need another surgery for more than 10 years and hopefully at that point it won't be the invasive open heart surgeries!!!
Have a wonderful day
I'm Michelle, another heart mom ! My son, Jayden got his wish last April .. in fact it was 1 year ago TODAY that we were on our way to Give Kids the Wolrd !!
Glad to have you and looking forward to hearing more about your trip !
Julie - So sorry for all that you're going through. Praying for Maddie, and that they're able to find & resolve the cause of the hypoglycemia. Is there a reason why the overnight feeds have to be inpatient and can't be done at home? I symapthize about results that never show something clear & treatable Praying she won't need the g-tube, and that the growth hormone issue will be easily resolved. Lots of hugs & prayers
Meeks23 So sorry for all that Jerzy, and your family, has gone through. Yay that she's getting her wish Congratulations on the upcoming wedding. So nice that your parents are able to go also.
Welcome, congrats on your upcoming wedding. Sorry to hear about your little princess, but here you'll meet a lotta folks you you'll find are helpful about a lot more than just a MAW trip
We've had to do a few weeks off med's a couple of times due to low neutrophils. Hope she comes back quick, with Kenzie it takes about a week and a half for her counts to get to where they want them 500+ to go home.
I have my fingers crossed for you guys.
I'd want to avoid the hospital stay too. Yeah, not having answers isn't fun.
Thanks. Ja has dipped below 500 plenty of times before - I guess the difference is that last times it happened treatment was delayed, she was sent home not on meds until the next week. This time (in maintenance) the IT MTX was still done, and she was sent home. We have 2 doses of Lecovorin to give tomorrow, then bloodwork on Tuesday. Maybe the Lecovorin is just freaking me out.
Probably minor stuff, knowing my honey badger. I am just trying not to think of another large shoe dropping.
We leave in just a little over a week for my dd make a wish trip to disney. This will be our first trip to disney world. I want to make sure that my children have a great time. How much money should we take. What should we do and what parks would be best my kids are 6,5,3, and 7 months. Make a wish called today to let me know that our itenerary was sent out. I was excited and forgot to ask what it was lol. Do they plan our day to day??
Yay Your family will have a great time
No, they don't plan out your day to day. The itinerary will have your travel info, list the expenses allotment you're receiving, any reservations (like dining, BBB) that they made for you (if applicable). Once you see the itinerary, you'll have a better idea of how much money you'll need, but they will cover most (if not all) of your expenses.
Knowing which parks are best for your family depends on your family. Some things to consider - What do they enjoy? How tall are they? (will prevent them from riding certain rides) Do they need lots of down time? AK for example - some families love it & spend all day there, others think it's boring & only do a few rides and then leave. Do they have favorite characters they want to meet? (some are only available at one park)
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