Nick's Make-a-Wish Trip!! Day Two updated! 2/28/09!

[tinytreasures]

Nick Looks great
our son is 10 and he has PID also
The wish granters came last week we are hoping to go to Disney the week before you go

 

[mom2lilnick]

Nick Looks great
our son is 10 and he has PID also
The wish granters came last week we are hoping to go to Disney the week before you go

Awwww.. that is a bummer that we will miss you by a week! Nick is just amazed when he sees others with his same condition. That only happens at the infusion center and he has never seen another child there since they don't have many kids and they don't want two kids on the same day.

He has only "met" a couple of adults and that was just while we were walking to the bathroom and another door happens to be open.

What PID does your son have? What is his treatment? Make sure you start a Pre-trip report so we can all follow along.

 

[tinytreasures]

Jason has IGG
we do IVIG every 3 weeks for a little over 5 hours or he reacts
we know another girl, she is 16, they both love going to treatments together we try to keep them on the same days. We use to do IV pole races down the halls when they were younger
He are in big room with 4 chairs and Jason is the only child (they stopped taking children but kept him and his girl friend) so he is treated like the "golden child" by all the nurses and everyone one else in the room
Jason got his port in before he turned 5 before that he had 3 PICC line by age 2 1/2 then we went off treatments for 2 years while the doctors fought about if he needed it or not
He is finally doing better over the last 12 months and we pulled him out of school this yr hoping to keep the bugs away. We thought we going to lose him over a sinus infection 2 winters ago.

I will start a post as soon as we get more info
they said in about 2 weeks

 

[llurgy]

Oh I do hope Kayla is ok and the Pneumonia doesnt get really bad.

S'funny, we havent done all that much towards our trip yet either, but we havent officially made our wish yet.
Becca isnt one for sit down meals either, she eats like a sparrow and DH is a really picky eater so I dont think he will get a lot out of the dining whilst we are on Becca's wish trip.
May do the Ugly Sisters character meal at Park Fair I think it is, they sounded really funny on Teresajoy and Heathersue's trip report and we like funny

I am watching the mail box waiting for some news from MAW...LOL....Me?? Impatient??? Not I!!

 

[mom2lilnick]

Took Kayla to the dr this afternoon and she does have pneumonia in both lungs.. poor girl. Antibiotics and breathing treatments. Old hat for us but new to her. Today was her first ever chest xray, it is amazing how different kids are.

llurgy, I really hope something comes soon from MAW. I just emailed with our volunteers today about some more forms to fill out (I can't believe there is anything left to sign but it just keeps coming LOL) and Nick's going away party.

 

[jham]

Took Kayla to the dr this afternoon and she does have pneumonia in both lungs.. poor girl. Antibiotics and breathing treatments. Old hat for us but new to her. Today was her first ever chest xray, it is amazing how different kids are.

llurgy, I really hope something comes soon from MAW. I just emailed with our volunteers today about some more forms to fill out (I can't believe there is anything left to sign but it just keeps coming LOL) and Nick's going away party.

Poor Kayla, I hope she feels better soon! I am such a planner I think I would go crazy waiting for someone else to plan for me.

 

[tinytreasures]

sorry she is sick
hopefully the meds will kick it out fast

 

[maroo]

Jason has IGG
we do IVIG every 3 weeks for a little over 5 hours or he reacts
we know another girl, she is 16, they both love going to treatments together we try to keep them on the same days. We use to do IV pole races down the halls when they were younger
He are in big room with 4 chairs and Jason is the only child (they stopped taking children but kept him and his girl friend) so he is treated like the "golden child" by all the nurses and everyone one else in the room
Jason got his port in before he turned 5 before that he had 3 PICC line by age 2 1/2 then we went off treatments for 2 years while the doctors fought about if he needed it or not
He is finally doing better over the last 12 months and we pulled him out of school this yr hoping to keep the bugs away. We thought we going to lose him over a sinus infection 2 winters ago.

I will start a post as soon as we get more info
they said in about 2 weeks

Tiny Treasures...

Yeah!!! Another Wish Family!!

I am excited for you guys...you will find a group of wonderful folks on this website...

Check out this link, too...it is a whole thread for Wish Families...

Wish Trippers UNITE!

 

[maroo]

Took Kayla to the dr this afternoon and she does have pneumonia in both lungs.. poor girl. Antibiotics and breathing treatments. Old hat for us but new to her. Today was her first ever chest xray, it is amazing how different kids are.

llurgy, I really hope something comes soon from MAW. I just emailed with our volunteers today about some more forms to fill out (I can't believe there is anything left to sign but it just keeps coming LOL) and Nick's going away party.

Oh no...Bless her heart! I am so glad that she has someone like you to take care of her, though!

Tell her that we hope she feels better soon!

 

[llurgy]

Poor Kayla At least with the antibioticals (becca's nick name for smelly meds)and the breathing treatments she will hopefully be fighting fit soon.

S'funny how some kids almost live in hospitals and others havent even been for bloodwork/xrays isnt it?

Fingers crossed that she will soon be feeling well again

Mandy

 

[mom2lilnick]

Happy Halloween everyone! I hope you all had a great night! Kayla is feeling much better, last night was the turning point for her. Nick on the other hand has had a fever, tummyaches and other GI issues all day. I took him to a couple of houses and then he asked to go back home and stay with daddy.

We got a couple of emails today from our MAW volunteer. One asking us to speak at an event next Sunday. I don't know if dh is off or not so we are holding out on that. The next one was asking if we wanted to sit in the skyview walkway for the biggest parade in town in Dec! Us and 5 other MAW families! How awesome is that? I can't wait, Nick has always loved parades and has never been to one. This one is always on some of the coldest days of the year so to be able to watch it go right under us in the warmth would be such a treat for Nick.

 

[mom2lilnick]

I just ordered.. or pre-ordered the Passporter 2009 edition. I am soooo excited to start planning.

Tomorrow we have to speak at the MAW fundraiser and I am so nervous, I really hope dh will do most of the talking. I am not sure if you are allowed to take pics inside a Mason Lodge or not so I am not sure there will be any pics to share.

 

[tinytreasures]

good luck tomorrow

 

[mom2lilnick]

Well, we survived! The MAW fundraiser was very nice. It was the Harvest Tea at the Masonic lodge. They were all very welcoming and so kind to Nick. There were not really any kids there except for a group of older girls.. about Kayla's age that came in late.

The kids got to draw for all the door prizes but first we had to get up and speak a bit. I was so nervous and I am sure it showed. DH would have been better. We met the only paid person at our MAW office and she is AMAZING!! Also one of the older girls came over and talked to us. They had gone on a MAW trip for her little brother last year. It was so much fun talking to her.

They presented Nick with a Star Wars action figure which he was over the moon about. He did ask if he could have one of the door prizes.. LOL! (why he wanted a hand painted tea pot is beyond me!) the lady said.. only if you draw your name out. He was so dissapointed not to win, when he came back to the table I said.. you couldn't win, your name wasn't in there!

We also found out we will be going to the airport in a LIMO! Nick was so excited (after we explained what a Limo was).

They invited us back in May when the Masonic Lodge presents the check to MAW, they want Nick to say how his trip went. They said the goal for this year was $15,000 and they had already received over 10K!!! Isn't that amazing? I am so in love with all the wonderful people we are meeting because of this trip!

 

[tinytreasures]

sounds like you did great
sorry about the tea pot

 

[iu97alum]

So glad it went well! Bummer 'bout the tea pot! Funny though.

 

[mom2lilnick]

I am so excited that we have flight info, I really didn't think we would get any of that until Jan 9th at our going away party!

So, right now our wish volunteer is checking to see if we still get our limo becuase our flight leaves at 5am in another city.. so that means we would have to leave the house at 2am!! wow.. that is early. I am thinking we will not be going to bed that night!

I can't remember if I posted pics of Nick's wish volunteers on here.. so here ya are..

I also wanted to post a pic of Kayla.. this was on the first day of school. This is really for Becca so she knows who to look for in a couple of months!

and.. just for good measure.. here is Noah and Nick on the first day of school this year.

 

[iu97alum]

I am so excited that we have flight info, I really didn't think we would get any of that until Jan 9th at our going away party!

So, right now our wish volunteer is checking to see if we still get our limo becuase our flight leaves at 5am in another city.. so that means we would have to leave the house at 2am!! wow.. that is early. I am thinking we will not be going to bed that night!

I can't remember if I posted pics of Nick's wish volunteers on here.. so here ya are..

I also wanted to post a pic of Kayla.. this was on the first day of school. This is really for Becca so she knows who to look for in a couple of months!

and.. just for good measure.. here is Noah and Nick on the first day of school this year.

Holy Toledo! 5AM? Wow! 2AM leave? Yea, I could see that! Congrats on the flight info!!!

 

[llurgy]

I am so excited that we have flight info, I really didn't think we would get any of that until Jan 9th at our going away party!

So, right now our wish volunteer is checking to see if we still get our limo becuase our flight leaves at 5am in another city.. so that means we would have to leave the house at 2am!! wow.. that is early. I am thinking we will not be going to bed that night!

I can't remember if I posted pics of Nick's wish volunteers on here.. so here ya are..

I also wanted to post a pic of Kayla.. this was on the first day of school. This is really for Becca so she knows who to look for in a couple of months!

and.. just for good measure.. here is Noah and Nick on the first day of school this year.

Nice to see pics of Nick Noah and Kayla, especially for Becca.
Becca says that Kayla already looks like a teenager and looks a lot older than 12 nearly 13.
She cant wait to meet you all, specially Kayla

Mandy and Becca

 

[mom2lilnick]

Yes, Kayla really grew this last year... I should find a pic of her from the previous May, she was about 40lbs lighter and 6 inches shorter. Scary stuff!