Noah's Wish Trip (Wings ~ July 29, 2009)

[maroo]

Love it!!

I can tell that Noah was feeling pretty good on this day! I love to watch him giggle and smile so big!!!!

The private meet and greets look so AWESOME!

 

[pixidustmom]

I think this is my first post in your TR. I came in very late. Anyway, Noah sure looked so happy and much more alert than prior days. It really made me smile to see him so happy.

Side note, your family is so precious. Your such a strong woman as a mother has to be right? Noah is one special little guy with a great support team. You can see the love his bother and sister have for him. I am sorry you didn't get to stay the whole trip but the memories of the days you had will last a life time.
My sister had leukemia as a child. We were lucky to share in her wish to go to Hawaii. There are amazing people out there that are willing to help a child have a wonderful wish come true.

 

[maroo]

This is just a shameless bump...

I would add some popcorn...because I am hoping for more!! But I promised I would not add any popcorn to your TR!

 

[ndloewen]

Our special meet/greet with Cat in the Hat, Thing 1 & 2, and whoever that yellow guy is...ndloewen

I looked it up this morning. It seems that it is "Sam I am" from the green eggs and ham book.

Oh, yes! "Sam I am"! Thanks!

this is by far one of my favorite updates to date. i am completely a disney girl, but noah just looks absolutely amazing thrilled in these pictures. i love it. every trip i say i will go to universal , it just hasnt happened yet, but seuss landing is quite appealing i think.

Oh, you have to try universal! No, it's not Disney...but it's fantastic in it's own unique way. I didn't think my kids would love it as much as they did. The Harry Potter Castle that they were working on looks like it will be amazing too. Can't wait to go back and see it.

Love it!!

I can tell that Noah was feeling pretty good on this day! I love to watch him giggle and smile so big!!!!

The private meet and greets look so AWESOME!

Yes, this was one of our really good health days. And I loved how they set up these private meet/greets.

I think this is my first post in your TR. I came in very late. Anyway, Noah sure looked so happy and much more alert than prior days. It really made me smile to see him so happy.

Side note, your family is so precious. Your such a strong woman as a mother has to be right? Noah is one special little guy with a great support team. You can see the love his bother and sister have for him. I am sorry you didn't get to stay the whole trip but the memories of the days you had will last a life time.
My sister had leukemia as a child. We were lucky to share in her wish to go to Hawaii. There are amazing people out there that are willing to help a child have a wonderful wish come true.

Thank you so much. Wow, Hawaii would be fantastic. If this had been MY wish to choose, that's where I would have gone!

This is just a shameless bump...

I would add some popcorn...because I am hoping for more!! But I promised I would not add any popcorn to your TR!

I'm still around...been a busy week with appointments. Maybe tomorrow I'll start working on more. Tonight I need a break...trying to get my head around going to Toronto Sick Kids for a while. We've been throwing around the idea for a while about going there for a second opinion, but I didn't want to go until after summer. I just really wanted a break. But today I was told by our surgeon that it is either now or never...she won't do surgery until we get another opinion. Just waiting on a date to go now...we could be there up to a month, away from the rest of the family! So guess this is our next trip I'm not looking forward to it...for my own selfish reasons...I just wanted a break from it all for a while. So I'm having a little pity party tonight. But, as always, if that's what we need to do for Noah, then I will pick myself up by my bootstraps and we will get it done.

 

[WishMom09]

We LOVED Island of Adventure!
Sounds like y'all had fun too!
I LOVE the pic of Noah getting the thing's nose!!
He has the cutest smile! It just lights up his whole face!!
I can't wait to read more!!

 

[kdzbear]

I love the picture of Noah with the Coke can. I loved the new update! I am so glad Noah was having a good day on this day. It looks like you made some great memories!

 

[Eeyore's-tail-tack]

You sound like you and DH need a night to be alone. Here's hoping you get the peace of mind you are searching for. I hope all goes well with Noah. It is amazing the strength that you as a Mother have shown. You will get it back, you are just that kind of person. Until then, here .

 

[maroo]

I'm still around...been a busy week with appointments. Maybe tomorrow I'll start working on more. Tonight I need a break...trying to get my head around going to Toronto Sick Kids for a while. We've been throwing around the idea for a while about going there for a second opinion, but I didn't want to go until after summer. I just really wanted a break. But today I was told by our surgeon that it is either now or never...she won't do surgery until we get another opinion. Just waiting on a date to go now...we could be there up to a month, away from the rest of the family! So guess this is our next trip I'm not looking forward to it...for my own selfish reasons...I just wanted a break from it all for a while. So I'm having a little pity party tonight. But, as always, if that's what we need to do for Noah, then I will pick myself up by my bootstraps and we will get it done.

Aw...I am so sorry! I am sure you have been really enjoying this semi-break from all of the things that you guys have been dealing with. Bless your heart!

I am sorry that you have to go away for that long. Toronto is far away!

Anyway...I am praying for you guys...especially you right now... that you will find some peace and feel better about all of this. Maybe they will shed some light on something you guys are not even aware of...(although you guys seem so well versed, you might teach them a few things!)

Hang in there!!!

And don't worry about this TR! I just wanted it bumped so people will keep reading it and posting to it!! Your family deserves that and it is a great TR!

 

[MRNsMommy]

I'm still around...been a busy week with appointments. Maybe tomorrow I'll start working on more. Tonight I need a break...trying to get my head around going to Toronto Sick Kids for a while. We've been throwing around the idea for a while about going there for a second opinion, but I didn't want to go until after summer. I just really wanted a break. But today I was told by our surgeon that it is either now or never...she won't do surgery until we get another opinion. Just waiting on a date to go now...we could be there up to a month, away from the rest of the family! So guess this is our next trip I'm not looking forward to it...for my own selfish reasons...I just wanted a break from it all for a while. So I'm having a little pity party tonight. But, as always, if that's what we need to do for Noah, then I will pick myself up by my bootstraps and we will get it done.

Just wanted to say that I'm praying for y'all...stay strong!

Loved this update! I would love to try and go to the Universal parks on our next trip. We just always run out of time! I might have to schedule it into our Dec. 2010 trip! I loved all the pics! You can really tell that this was a great day for Noah!

 

[eyor44]

Just wanted to say hello. Love the pics and glad that Universal treated you all so well. We like Universal and IOA. They are different and we just keeping reminding ourselves that we aren't in Disney anymore. I'm really glad that they treat Wish families so well.

 

[ndloewen]

Just got a date for Toronto Sick Kids...they have a bed for him next tuesday!! (I needed a few of those for emphasis). Frantically trying to work out all the details. Originally it was for a week, now I have heard to expect a minimun of 2 weeks, probably longer. Very sad to be leaving my kids behind.

 

[Eeyore's-tail-tack]

My prayers go with you and your family.

 

[princesskelz]

Hugs to you and your family!
still keeping you family in my prayers.


i loved your IOA update! its been FOREVER since i was in Universal Studios FL.

 

[3princesses+aprince]

Hey, I've been following your pre trip and trip report, I just came on to see what was up!!! How is everything going? Everything Ok?

 

[twinmum]

Hello! I thought I'd pipe in with a little update on Noah - I know that Nichole is very busy, but she does post on her blog daily. Noah and Nichole have been here in Toronto for 19 days now, with Noah staying at the Hospital for Sick Children (aka Sick Kids). He's in great spirits and his health is good right now. And he is remarkably patient given all the tests and procedures and therapy he's having. Nichole has been staying at Ronald McDonald house. A little over a week ago, Noah had some surgery, mostly exploratory to check out the "real deal" on his stoma and anatomy around the stomach, and a biopsy related to some other tests.

They are hoping for biopsy results early this week so that perhaps some additional OR time can be available later in the week. If not, Noah and Nichole will likely return to Winnipeg and return at a later date for surgery.

While I think Nichole has been quite pleased with the team at Sick Kids, it's pretty lonely without Brad and the kids. Noah usually gets day passes on the weekends, so they have explored Toronto a bit. I had the pleasure of meeting them both and hope to see them again.

So there, in a nutshell, is the scoop!

Alison

 

[maroo]

URGENT Prayer Request...


NOAH is in the hospital and does not sound well...

Here is his blog...

Please, please pray for Noah and his family.

http://noahgrantjohn.blogspot.com/

 

[oklamomof4boys]

URGENT Prayer Request...


NOAH is in the hospital and does not sound well...

Here is his blog...

Please, please pray for Noah and his family.

http://noahgrantjohn.blogspot.com/

Maroo- thank you so much for posting this. I hadn't checked their blog in a week. We are certainly praying for that precious boy and their entire family. Maroo, you are such an asset to all the wish families- God bless you!

 

[DisneyMom5]

Thanks for posting that here! I forget to check blogs, but I get notifications here. Praying!

 

[princesskelz]

Thank you Maroo for posting this
praying for the family and little Noah

 

[maroo]

This precious boy has beaten the odds no less than 4 times since I have "known" them last year. Christmas, January, February and on the way home from his Wish trip.

I know he must be really tired. He does not seem to be responding to the things he normally responds to.

Here is the last update in the words of his Mom and then his Dad...

Please, please pray for all of them!!


Things are rough here...we are living hour to hour...things are still critical. The night was very rocky with worsening blood gases. Noah is proving to be very difficult to ventilate. His asthmatic issues really complicate things, causing these long, forced expirations, that do battle with the breathes the ventilator is trying to give him. Ketamine has been added to his ever growing list of drugs to help with the asthmatic issues, as well as lots of ventolin. Many ventilator changes to try and find a happy place for Noah, but we still don't seem to be there yet. Gases are still bad, but not worsening this evening. Noah's blood pressure has begun to drop...he recieved more albumin and a dopamine infusion was started. He is still spiking crazy high fevers and his kidneys are not functioning well. Nothing has grown so far on any of the cultures and H1N1 results won't be back until tomorrow. So really, not definative diagnoses yet other than ARDS (acute respiratory distress syndrome).

Line access, as always, has been a major issue again, as Noah is needing more and more meds. Since our central line is only a single lumen and Noah needs that for his TPN, more access was quickly needed. The docs managed to get a double lumen PICC line in his femoral vein, but because of so much scarring, were unable to thread it much. Hopefully it will at least buy us some time.

Praying once again for another miracle.

(Update: 2:00 am July 29 ... Nichole called me (Brad) in early this morning because Noah was going downhill very fast. The Doctors were not sure if he would make it through the night. Noah is currently on medication to sustain his blood pressure and effective heart beat, he is also on the oscillating ventilator and kidneys have shut down. More updates to come as there are any.)