Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[jessica52877]

I wanted to let you all know that my dd came home from the hospital on Monday. We had her send off party with her wish granters last night. I am just so amazed at how generous MAW is. Today is her birthday and they had a cake for her last night, gave her a backpack filled with goodies, and I was most amazed at the check they gave us. Since we are going to be on a cruise I figured they wouldn't give us much because all the meals are included, but they gave us money for meals on traveling days and money for lunch the days we are in port. We leave on Sat. and we are all so excited. Now I have to do a ton of packing, being in the hospital the last two weeks really messed up my getting ready plans.

Have a great trip and tell your daughter happy birthday! I am so glad that she was able to come home and that you'll still make it!

 

[tastycollector]

I am so glad that Noah's was a quick fix!

It seems like Dev has been through so much lately! Can you put a link to your pre-trip in your siggy? I am always digging for where it is! I am pretty obsessed with legoland and Disneyland so love to follow it! In fact 1 year ago today we were at the San Diego Zoo! Why can't I be there right now!

Okay, I think this will get you to our pre trip report.

www.disboards.com/showthread.php?t=2114367

 

[keetmommy]

We are home from the hospital, 24 hours ago she was just coming out of surgery and now she is home and running around...soon we will be leaving on our trip...

 

[tastycollector]

Okay, I'm learning. I figured out how to put a signature and my thread. Yeah, me. Way to much watching the Disney Channel with the kids. They both love Hannah Montana and the Suite Life.

 

[sammie girl]

thanks everyone for all of your prayers as we deal with our diabetic dd who now is fighting mono and possibly some kidney trouble. Prayers are always welcome......

 

[maroo]

Wow! I miss a whole day on this thread and it explodes!

I also ask for prayers for my dd Andrea as she has a cardiologist appt. on Thursday morning. We will have a few test and find out if her left ventricle pumping function has improved. We should also find out what is the next step, so far we are figuring on a open heart surgery this summer sometime. She has been having lots of anxiety lately, and she doesn't even know what all is going on and the fact that she might have a surgery this summer.

Definitely praying for you guys!!! Let us know it all turns out! And I will head over there...hopefully soon!

Just a head's up! My dd (wish child) is sick again....She now has mono (it was going around her school. We are estimating this is about her 3rd week with it so it should be long gone before our trip (the symptoms anyway). She won't be contagious and in fact has been approved to go back to school. Just no sharing of her drinks etc. We preach against that anyway because she is so prone to getting stuff more easily than others.

I am praying for all the sick reports I have read on here. I know mono is a drop in the bucket to what some of you are going through at this moment and my prayers are with you all.

I am sure that the mono will really mess with her blood sugars. I hate that she has to deal with that on top of everything else!

When does she get out of school?

Lauren's last day is FRIDAY!!

I wanted to let you all know that my dd came home from the hospital on Monday. We had her send off party with her wish granters last night. I am just so amazed at how generous MAW is. Today is her birthday and they had a cake for her last night, gave her a backpack filled with goodies, and I was most amazed at the check they gave us. Since we are going to be on a cruise I figured they wouldn't give us much because all the meals are included, but they gave us money for meals on traveling days and money for lunch the days we are in port. We leave on Sat. and we are all so excited. Now I have to do a ton of packing, being in the hospital the last two weeks really messed up my getting ready plans.

Aw! I am so glad that you had the send off! MAW is awesome! And I am so glad you are finally out of that hospital.

Have a BLAST!!!!!

Just read on Noah's blog that it was a qucik fix and is still working!!!!!! The power of prayer is amazing!

We back at the dr. with Dev yesterday. The school called and said he wouldn't walk on his right foot. The pedi says it's not broken, but they are concerned about an infection. Now he is cruising around school in a wheelchair. Watch your toes Gotta laugh or I just might start crying

I am so thankful that Noah is better!

Oh no! I am sorry Dev has an infection! They won't let him walk...that is not cool! Although, he might think it is cool for a few days!

I am so glad that Noah's was a quick fix!

It seems like Dev has been through so much lately! Can you put a link to your pre-trip in your siggy? I am always digging for where it is! I am pretty obsessed with legoland and Disneyland so love to follow it! In fact 1 year ago today we were at the San Diego Zoo! Why can't I be there right now!

I saw this link and will put it on page 1, too!

Okay, I think this will get you to our pre trip report.

www.disboards.com/showthread.php?t=2114367

I will link this on our first page, too!

We are home from the hospital, 24 hours ago she was just coming out of surgery and now she is home and running around...soon we will be leaving on our trip...

Woo Hoo! HOME! That is fantastic! Sounds like she is bouncing back nicely.

Okay, I'm learning. I figured out how to put a signature and my thread. Yeah, me. Way to much watching the Disney Channel with the kids. They both love Hannah Montana and the Suite Life.

Hannah Montana and the Suite Life...sounds like fun!

thanks everyone for all of your prayers as we deal with our diabetic dd who now is fighting mono and possibly some kidney trouble. Prayers are always welcome......

We are praying for you guys!

 

[Andreaswish]

Hi,

Those of you that extended your trip, where did you stay on your extra days?? Did you like where you stayed?? We are still looking for a place. I been doing lots of research and am quite disappointed with some of the hotels and there reviews.

Any recommendations would be greatly appreciated. We don't want to spend a lot and want a clean nice hotel preferrable close to GKTW especially our first night there.

Please help me, we only have a few weeks.

Diane

 

[Corrine 1973]

I just wanted to ask everyone if they could keep my little girl in their prayers. I spoke to soon when I mentioned that Mia hasn't had any breathing problems for a couple of months because today she woke up and I could tell from the way she was talking that she was having trouble. She has had 3 albuterol treatments today. It breaks my heart when she looks at me and asks me for a treatment. Luckily we already had a follow up appointment for the pulmonologist on Monday.

Than to make matters worse, I took Aidan and her to the Ped. for phisicals for day care and Mia's was poked in her finger where they gathered blood in a tube. According to the the test Mia's Lead levels are high. For that test I was told 3.3-3.5 is normal and 7 is considered danger area. Mia's is registering as a 6. They took some blood and I will find out more tomarrow. I have done a little reserch since getting home and admite that I am now freaking out.

Than I get scared about the boys. Aidan is so young and with how would lead poisioning affect a kid with CF like my son Liam. I am probably just overreacting. I am hoping the sample was just contaminated some how. thanks for listening.

 

[tastycollector]

Hugs all around!! Prayers all around to all the little ones and their families who are struggling right now.

 

[daddyto8]

According to the the test Mia's Lead levels are high. For that test I was told 3.3-3.5 is normal and 7 is considered danger area. Mia's is registering as a 6. They took some blood and I will find out more tomarrow. I have done a little reserch since getting home and admite that I am now freaking out.

Than I get scared about the boys. Aidan is so young and with how would lead poisioning affect a kid with CF like my son Liam. I am probably just overreacting. I am hoping the sample was just contaminated some how. thanks for listening.

First of all take a REALLY DEEP BREATH!

Ok, that done (you did listen to me didn't you???) let them do are more detailed study. If there is lead, it is not likely contamination; but it could be miss-read; so don't panic.

If it is lead, the major step will be to find out where it is coming from and get rid of it....do you live in an older home that could have lead paint, have hand-painted toys she chews on, maybe a grandparent w/ older paint?

As for the effects, they are not very nice, but and the major point is to stop exposure and determine where you stand. As for Liam, the impacts of lead should have no affect/change on CF, his risks would be the same as the others.

Ultimately, try not to let what you find online freak you out, there are too many variables. Let your Dr run the tests and then go from there.

I'll be praying for you as I know this is another stress nobody needs.

 

[daddyto8]

Freaking out DAD

We leave in the morning (4am ish) on my first Dis-trip. I believe without a doubt that I will not survive a week in Orlando with my 8 kids, so it was nice knowing you all

I'll work on my trip report when I get back, everyone have fun as my wifey has told me NO INTERNET while we are there.

 

[tastycollector]

Freaking out DAD

We leave in the morning (4am ish) on my first Dis-trip. I believe without a doubt that I will not survive a week in Orlando with my 8 kids, so it was nice knowing you all

I'll work on my trip report when I get back, everyone have fun as my wifey has told me NO INTERNET while we are there.

Have a great time!!! I think my husband will tell me the same about the internet. I have even read that they suggest you turn off your cell phone while visiting. I know we are taking ours if we decide to go separate directions with our kids. I told DH NO WORK CALLS!!!!!

One day to mom and daugher shopping trip!I can't wait to spend some one on one with DD9. We have really had a hard time the last 2 months. I have been so consumed by Dev's illness that I haven't been able to give her the mom time she needs.

Anyone have kids that are water restricted? Dev can't do water and I'm having a hard time deciding if I should pack swimsuits for the rest of us. I don't want him to feel left out, but I hate making everyone be resricted too. Guilty mommy feelings....

 

[kmparrish5]

Have a great time!!! I think my husband will tell me the same about the internet. I have even read that they suggest you turn off your cell phone while visiting. I know we are taking ours if we decide to go separate directions with our kids. I told DH NO WORK CALLS!!!!!

One day to mom and daugher shopping trip!I can't wait to spend some one on one with DD9. We have really had a hard time the last 2 months. I have been so consumed by Dev's illness that I haven't been able to give her the mom time she needs.

Anyone have kids that are water restricted? Dev can't do water and I'm having a hard time deciding if I should pack swimsuits for the rest of us. I don't want him to feel left out, but I hate making everyone be resricted too. Guilty mommy feelings....

Decisions...decisions...
Our 23 month old, Landon, can't be in the water much. He aspirates everything that goes into his mouth so we probably won't put him in the water much. I would hate to have to go to the hospital with him for pneumonia. I will take swimsuits for everyone else. I may have to send my husband to take the girls swimming.
Have fun on your shopping trip. I know all about feeling guilty. I have three. They all have some issues, but our middle one is the healthiest child. I worry that she feels left out often.

 

[kmparrish5]

I am a little behind on reading posts. I wanted to say I was praying for all of those kids who have had medical issues lately. Here is hoping everyone is feeling better soon.

 

[maroo]

I just wanted to ask everyone if they could keep my little girl in their prayers. I spoke to soon when I mentioned that Mia hasn't had any breathing problems for a couple of months because today she woke up and I could tell from the way she was talking that she was having trouble. She has had 3 albuterol treatments today. It breaks my heart when she looks at me and asks me for a treatment. Luckily we already had a follow up appointment for the pulmonologist on Monday.

Than to make matters worse, I took Aidan and her to the Ped. for phisicals for day care and Mia's was poked in her finger where they gathered blood in a tube. According to the the test Mia's Lead levels are high. For that test I was told 3.3-3.5 is normal and 7 is considered danger area. Mia's is registering as a 6. They took some blood and I will find out more tomarrow. I have done a little reserch since getting home and admite that I am now freaking out.

Than I get scared about the boys. Aidan is so young and with how would lead poisioning affect a kid with CF like my son Liam. I am probably just overreacting. I am hoping the sample was just contaminated some how. thanks for listening.

Definitely praying for you guys! I think daddyto8 gave some great advice...to hold off on getting too upset. I agree, though, that is disturbing.

Freaking out DAD

We leave in the morning (4am ish) on my first Dis-trip. I believe without a doubt that I will not survive a week in Orlando with my 8 kids, so it was nice knowing you all

I'll work on my trip report when I get back, everyone have fun as my wifey has told me NO INTERNET while we are there.

You guys are going to have a great time! What a smart wife you have there! No internet!

You probably won't miss it much. You will be so busy and having so much fun!

Enjoy the time you guys all get to spend together and go with the flow...you will love it!!

Can't wait to read your report!

 

[Andreaswish]

Well her appointment is done. The overall appointment went well. Her left ventricle is still impaired but did improve slightly. We praise God that it did improve and didn't get worse. Her doctor increased the dosage of one of her meds. and hopes this will continue to help her. He will now send all the test results along with a letter to her heart surgeon in Ann Arbor,MI. We do know that the conduit in her heart needs to changed and this may also help her left ventricle pumping function.

So now we are in limbo until the heart surgeon decides what the next step is going to be. More than likely we will be having a heart surgery in July or August. We should know more in about a month. If we don't hear from her cardiologist by the time we get home from our Disney trip then we need to call them.

So as you can see we didn't really get any new information or answers.

Now we need to just concentrate on our upcoming trip and make it Magical for her.

Diane

 

[maroo]

Well her appointment is done. The overall appointment went well. Her left ventricle is still impaired but did improve slightly. We praise God that it did improve and didn't get worse. Her doctor increased the dosage of one of her meds. and hopes this will continue to help her. He will now send all the test results along with a letter to her heart surgeon in Ann Arbor,MI. We do know that the conduit in her heart needs to changed and this may also help her left ventricle pumping function.

So now we are in limbo until the heart surgeon decides what the next step is going to be. More than likely we will be having a heart surgery in July or August. We should know more in about a month. If we don't hear from her cardiologist by the time we get home from our Disney trip then we need to call them.

So as you can see we didn't really get any new information or answers.

Now we need to just concentrate on our upcoming trip and make it Magical for her.

Diane

Well...that all sounds encouraging. Not getting any worse is a great thing, when you are looking at something that can be progressive...and getting better sounds really good!

And it sounds like they have meds that they can play around with, too, and hopefully make things get even better!

This will be such a magical time for you guys and hopefully gives you some relief so you can concentrate on the trip and all of the MAGIC!

We will keep praying for her!!!

 

[keetmommy]

I am it isn't getting any worse and you can just plan/think about your trip. Our week was very similar, we got the appointment/problem taken car of and now we can think about the trip which is in 4 weeks and 4 days..

 

[tastycollector]

Well her appointment is done. The overall appointment went well. Her left ventricle is still impaired but did improve slightly. We praise God that it did improve and didn't get worse. Her doctor increased the dosage of one of her meds. and hopes this will continue to help her. He will now send all the test results along with a letter to her heart surgeon in Ann Arbor,MI. We do know that the conduit in her heart needs to changed and this may also help her left ventricle pumping function.

So now we are in limbo until the heart surgeon decides what the next step is going to be. More than likely we will be having a heart surgery in July or August. We should know more in about a month. If we don't hear from her cardiologist by the time we get home from our Disney trip then we need to call them.

So as you can see we didn't really get any new information or answers.

Now we need to just concentrate on our upcoming trip and make it Magical for her.

Diane

Hurry up and wait stinks! Trip planning is much more fun. I am glad that things look better with her heart.

 

[Corrine 1973]

First of all take a REALLY DEEP BREATH!

Ok, that done (you did listen to me didn't you???) let them do are more detailed study. If there is lead, it is not likely contamination; but it could be miss-read; so don't panic.

If it is lead, the major step will be to find out where it is coming from and get rid of it....do you live in an older home that could have lead paint, have hand-painted toys she chews on, maybe a grandparent w/ older paint?

As for the effects, they are not very nice, but and the major point is to stop exposure and determine where you stand. As for Liam, the impacts of lead should have no affect/change on CF, his risks would be the same as the others.

Ultimately, try not to let what you find online freak you out, there are too many variables. Let your Dr run the tests and then go from there.

I'll be praying for you as I know this is another stress nobody needs.

Thanks so much for the post. It really did help me seatle down this morning after I read it. Good news is that I got a call from the Dr this afternoon and hey say that the blood test says that her lead levels are normal.

Enjoy your time in florida and I am looking forward to hearing about your trip in a couple of weeks.