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

[mom2lilnick]

Okay, let's see if I can do this. We were told that Nick was going to be granted a wish about mid August and met with his wonderful wish coorinators about a week later. We just finally got our dates this last Sunday tho. We will be staying at GKTW and going to Disney Jan 19-25, 2009!

Cast of Characters..

Me, Amy.. I am 33, never been to Disney but we looked into a lot of Disney vacations that we could never afford but it was always fun dreaming of them. I was a SAHM for 6 years and just accepted a postition as a moderate 1:1 para at Nick's school. Because of Nick, I am unable to work full time so I job share with another mom. I love the job so far!!

Dh.. Jeff, 39. He has been to Disneyworld a couple of times and Disneyland as a child.

dd.. Kayla, 12. She is our typical preteen.. moody at times but the most wonderful, dependable child you could ever ask for. She has epilepsy but thankfully has been seizure free for over 2 years now. She is a straight A student and plays volleyball and loves music.

ds1.. Noah, 9. He is the typical middle child. nothing in life is fair even tho technically he is the most spoiled of them all. He is also very bright and very athletic, plays soccer almost all year round and baseball in the summer.

ds2.. Nicholas, 5.. will be 6 by the time of his wish trip. Nick is amazing. To look at him you would never know that he is the "sick child" he is always so happy. That attitude has kept him out of the PICU a couple of times, being told that they can't admit a child that is still smiling to the PICU. That really sums Nick up in a nutshell. Of course this week he is on predinsone and this is NOT the case but 99% of the time it is.

Here is Nick this summer..



We were given the option to stay the night at the Strategic Air and Space Museum as Nick's going away party. We haven't offically said yes to it but I think we are going to, usually only boy and girl scout troops are able to do that and a heafty price so it seems like a great opportunity and Nick LOVES all things to do with airplanes. We live by an airport and a couple of years ago there was an air show so for 3 days the blue angels were practicing right over our house. It was amazing.

I will explain more on Nick in another post...

[mom2lilnick]

Nicholas was born at 37 weeks.. after preterm labor starting at 12 weeks and bed rest at 27 weeks. I had preeclampsia will all the kids but Nicks was the worst, requiring hospitalization with mag sulfate for a few days before they let him be born the at 37 weeks 0 days. Right off he had some issues breathing but only required the O2 tent and was able to go home on time but never did leave the nursery. I think we pushed the dr's to hard about wanting him to be home for Christmas because he came home the night before Christmas eve and ended up back in the hospital Christmas day.

That started 4 months of him crying/screaming non-stop. It was horrible, we were told it was the formula, it was colic, it was reflux. All I know is that every moment he was awake someone had to walk around holding him while he just arched his back screaming the entire time.

Finally at 4.5 months his ped sent him to Omaha to a GI dr who switched formulas again.. and again. Ended up admitting Nick at 5 months for a whole slew of tests and found that his GI tract was severely inflamed. We left that 8 day hospital stay with an ng tube and another formula. At 6 months, he was still not gaining any weight and was 12 lbs.. admitted again, 11 days, this time for a central line, TPN and total gut rest. We did that for 4 months. With several hospital stays because now Nick was HAPPY.. he was no longer in pain and he was growing. So he was learning how to crawl and pulled and twisted that line that it tore once and got infected once.. landing him back in the hospital for another 11 days in septic shock. That was one of the most scary times in our lives.

Halloween.. Nick is 10 months old and a whooping 21 lbs!! We are able to get rid of that nasty central line! He was taking neocate formula by bottle with no problem finally.

Things at that point looked like the worst was over for him. Then the illnesses started.. RSV, Croup, bronchiolitis, sinus infection after sinus infection, pneumonia. He was 15 months old and still 20 lbs. On the suggestion of a urgent care dr we took him to see an immunologist who confirmed that he had a primary immune deficiency called Common Variable Immunodeficiency. He started IVIG at 18 months old and still receives it every 4 weeks. Altho it took several years before the illnesses started to decrease, he was able to come off formula only at age 2 and now at age almost 6 he is huge for his age. 47 inches tall and 46 lbs. He still battles a lot of illnesses, currently has bronchitis and a sinus infection. Has a lot of tummy issues, headaches, joint pain, severe asthma and temp regulation issues (his body temp gets over 100 if he is overdressed and has been down to 93 on a cold day). He was also left with a latex allergy from having 4 surgeries in the first 9 months of his life. That is sometimes the hardest struggle for him.

Nick just started Kindergarten this year and he LOVES it! He is starting to read.. anything phonetically anyways. It has been such a blessing to see him grow and thrive after being so unsure of his future for so long.

Here are a couple of pics of him receiving his IVIG..

[HeatherSue]

Amy, thanks for starting a pre-trip report! Wow, you guys have really been through a lot. I can't imagine how hard all this must have been on your family. Nick is such a CUTIE! I love his official wish (in your ticker), so sweet!

Can't wait to read about your plans!

ETA: I just noticed the little brown dog in the picture. Tessa has one of those from build-a-bear named Chocolate!

[Khalana]

I love the start of your TR! Nick sure is cute!! Looking forward to hearing all about your plans and your trip!

[iu97alum]

What a great start! Can't wait to hear more! How did you get in touch with your wish org?

[DeblovesPoohbear]

He is so stinkin cute! Thanks for sharing, can't wait to hear more

[maroo]

I love your TR and I can't wait to see more about your plans, etc. We had such a wonderful time!

I have a question, though...about IVIG...

William, Lauren's little brother, has finally been diagnosed with an immunodeficiency. He has had frequent infections since the day he was born! It looks like he may end up getting IVIG. I am familiar with the drug's use in adults, because I work at a cancer clinic (we do hematology stuff, too).

Does Nick get admitted each time he gets the IVIG? How often does he have to take it? How long does it last each time? I am just curious. I am worried about little William...and this is just one more thing for their family. If you don't want to answer on here, please feel free to PM me...

Thanks for your help!

[mom2lilnick]

Originally Posted by iu97alum

What a great start! Can't wait to hear more! How did you get in touch with your wish org?

I belong to an email listserve for primary immune deficiencies and they were talking about MAW a number of years ago. This last year was pretty hard on Nick and I googled MAW and saw the online form and thought what can it hurt to fill it out? They responded saying it wasn't up to MAW but Nick's dr to see if he qualified.. so I filled out the form and heard back from them about a month later.

Originally Posted by maroo

I have a question, though...about IVIG...


Does Nick get admitted each time he gets the IVIG? How often does he have to take it? How long does it last each time? I am just curious. I am worried about little William...and this is just one more thing for their family. If you don't want to answer on here, please feel free to PM me...

Thanks for your help!

Nick doesn't get admitted, altho some places do that. We are fortunate enough that our immunologists office has a satilitte office in our town that has an infusion room. They do IVIG for about 20 people a month. At one point Nick was the youngest but he isn't anymore. Nick's infusion takes about 3 hours, but I know that the larger the person the more grams of immunogloblin they will require so it may take longer.. altho also the larger the person the faster the rate it can be ran. He goes every 4 weeks, some people go every 3. Nick was doing it every 2 weeks at one point but thankfully that is no longer the case.

What type of Immune def. did they dx him with? If you don't mind me asking?

[oklamomof4boys]

Great start of a trip report! Nick is such a cutie! I can't wait to hear more of your plans! I don't know why I am ending every sentence with an exclamation point!

Carol

[bex271]

great start on the ptr and nick is so cute, i can't wait to hear your plans.

becca

[mom2lilnick]

What are the best recommendations for books for planning? I know I have seen a couple mentioned on other threads but don't remember where I saw them. Is there anything that give a good list of what to pack for what times of the year especially since we are going in Jan? Also like what rides are in what parks?

Thanks!

[llurgy]

Originally Posted by mom2lilnick

What are the best recommendations for books for planning? I know I have seen a couple mentioned on other threads but don't remember where I saw them. Is there anything that give a good list of what to pack for what times of the year especially since we are going in Jan? Also like what rides are in what parks?

Thanks!

I bought The Unofficial guide to Disney, The Disabled Guide to Disney and The Official Guide to Disney for Kids.

The one for kids is actually for kids to read, Becca likes it because it has comments by kids and describes the rides quite well.
The Disabled guide was bought for the obvious reasons with Becca being in a wheelchair for most of the time. It also gives very detailed descriptions of the rides.
The Unofficial Guide was bought because it came highly recommended by lots of people. It is packed full of information which is where it earns a criticism...it is big and unwieldy and has nearly too much info in it.

Clothes.......I have only ever been to Florida once for a long weekend in West Palm Beach. The date was December 18th til 23rd and it was lovely. Not to hot so not very humid and shorts weather everyday. The week before I visited though it was raining and quite cool so I think you may have to pack for every eventuality I am afraid, That is what I am planning to do, that and take advantage of the washer/dryer

Mandy

[mom2lilnick]

Mandy, thank. I will look for those. I think the older kids would enjoy the one for the kids as well.

[mom2lilnick]

Nicholas received a spinoza bear today, delivered by UPS. I have no idea why he got it but it said it was from the American Legion. Are they part of MAW?? The bear is AWESOME. I has a CD player inside him with a speaker and also came with headphones. Nick has been laying on the couch just listening to it over and over.

Anyone ever heard of this before? I looked up their website and they are $$! We are going to send a thank you note to the address that was listed.

[Khalana]

Originally Posted by mom2lilnick

Nicholas received a spinoza bear today, delivered by UPS. I have no idea why he got it but it said it was from the American Legion. Are they part of MAW?? The bear is AWESOME. I has a CD player inside him with a speaker and also came with headphones. Nick has been laying on the couch just listening to it over and over.

Anyone ever heard of this before? I looked up their website and they are $$! We are going to send a thank you note to the address that was listed.

That's so cool! Isn't it amazing all the little (and BIG) blessings you get through things like MAW??