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Old 10-16-2012, 10:54 PM   #1
NEmel
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Carter's Make a Wish Trip!

We are so excited to experience the magic of Make a Wish! Our cast of character's consist of; Melissa(me), Bryan (dad), Austyn (big brother), and Carter (wish child.)

A little backgroud on us, we are from the great state of Nebraska! Go Huskers!! Bryan and I have been married for 12 yrs. Austyn just turned 10 and is very social and a real go getter! Carter just celebrated his 7th birthday last week. I had lots of complications during my pregnancy, I was on tons of insulin from 21 weeks on also had high blood pressure. Carter was born at 36 weeks by emergency c-section. He was not able to breath on his own due to pneumonia and respiratory destress syndrom. He was on a ventilator for 6 days and in the NICU a total of 12 days. He was a very unhappy baby from the start. Finally after countless trips to the dr and proving I'm not a crazy mom he was dx with MSPI and refux. After 6 months he started getting sick A LOT! He always had ear and sinus infections. We tried getting tubes, removing adenoids and tonsils. Tried every reflux and allergy med there is. We saw 3 different ENT's, and different allergy/immunology doctors. Finally after 18 antibiotics and 3 bouts of pneumonia and thousands of dollars in blood tests he was diagnoised with immune deficiency. This was at 3 years old. After we learned of his dx his doctor wanted to start him on imunoglobulin treatments. These treatments are done either at home sub q or at the doctors by IV. We ended up having to go through 3 insurance denials due to the company not wanting to pay for treatment, monthly cost is $16,000! It was so frusting knowing we could do something to help him and they wouldn't allow it! We started him on immunoglobulin treatments 2 months after dx. We choose to do sub Q so that he does his weekly treatments at home. This makes it easier on him and us! At first they hoped that he would out grow it, but as time has gone on it has progressed to CVID.
He does really well, as long as he does his treatments. Towards the end of the week his energy level decreases and his joints and muscles start hurting. This is a sign he is ready for some more immunity! We also do propholatic antibiotics during the winter months. He is so brave doing his treatments and I'm so proud of him! It is amazing what these little ones have to go through and how well they deal with it!
We applied for MAW the first of September and received his family packet on Sept 24. We meet his wish granters next Wed. We are all super excited!!! His wish is to go on a firework cruise! He has seen the commercials for Disney Cruise Ships and he would love to watch the fireworks! I will try and get pics uploaded soon!

Last edited by NEmel; 11-14-2012 at 06:10 AM.
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Old 10-16-2012, 11:10 PM   #2
NEmel
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Carter and Austyn




The whole family
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Old 10-17-2012, 01:23 AM   #3
Lilfoot93
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I am so glad Carter gets his wish! He is going through a lot! I didn't realize they had firework cruises. That sounds like a lot of fun! Can't wait to hear more about your planning. Your boys are precious!

Jackie
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Old 10-29-2012, 10:01 PM   #4
NEmel
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Carter's wish granters, Sara and Makaela came over Wednesday night to meet us. They asked him all of his favorite things, his wish, and why he wanted to go on a cruise. It is amazing how just knowing that he has been granted a MAW helps get him through his weekly treatments. He told me the other day, I haven't cried for my needles for 2 weeks since I am a wish kid! Truely a blessing.



Carter and his wish granters!
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Old 10-29-2012, 10:50 PM   #5
angel's momma
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I'm so sorry that Carter, and your family, has had to go through so much. I'm glad that he's doing so well, and that his MAW has helped me get through the needles - Angel had daily sub Q GCFS for several months, and I always felt so bad having to be the one to give them to her.

Carter is adorable! And you have a beautiful family
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-03-2012, 09:57 AM   #6
NEmel
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Quote:
Originally Posted by Lilfoot93 View Post
I am so glad Carter gets his wish! He is going through a lot! I didn't realize they had firework cruises. That sounds like a lot of fun! Can't wait to hear more about your planning. Your boys are precious!

Jackie
Thanks for the warm welcome! Looks like our boys are the same age . I'm so sorry for everything Trevor has had to go through, the these kids are so amazing! We went to Disney a couple of years ago in late May and loved it! The weather was great, a little hot but we are from NE so used to hot humid summers!
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Old 11-03-2012, 10:01 AM   #7
NEmel
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Originally Posted by angel's momma View Post
I'm so sorry that Carter, and your family, has had to go through so much. I'm glad that he's doing so well, and that his MAW has helped me get through the needles - Angel had daily sub Q GCFS for several months, and I always felt so bad having to be the one to give them to her.

Carter is adorable! And you have a beautiful family
Thanks for you kind words! I luckily work in the medical field so I wasn't as worried about doing treatments as my hubby was. We now both are 'pros' at it and it is second nature. Luckily Carter felt so crappy and felt so much better with the treatments he was willing to do them without much fuss. We have numbing cream we use so it makes them a little less painful. It is mainly the blood draws that he hates! Well and sitting still for 2 hrs for the treatment!
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Old 11-03-2012, 10:40 AM   #8
NEmel
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Here are a couple of pictures of Carter during his treatments!
[IMG][/IMG]

Treatment at home

[IMG][/IMG]

Treatment at the doctor's office

[IMG][/IMG]

Eating ice cream at Cold Stone on "Make A Wish" night!


[IMG][/IMG]

The boys ready for Trick or Treating!
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Old 11-05-2012, 11:25 AM   #9
angel's momma
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No little boy should ever have to go through all that. It looks like he handles it tremendously well though. Hope the boys had a fantastic Halloween.
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
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Old 11-05-2012, 09:05 PM   #10
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What an adorable family you have! My son had to get epogen injections at home - I loathed giving him those. Luckily he has a port for labs and infusions. Woohoo!
Can't wait to read more about your trip. Oh and now I'm in the mood for some Cold Stone... wonder if I can con the hubby for a late night run???
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Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

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Old 11-06-2012, 07:52 PM   #11
NEmel
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Made Carter a shirt! Don't mind the stain, just a little bit of his lunch!
Just one of the many I plan on doing!
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Old 11-08-2012, 08:16 PM   #12
NEmel
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Originally Posted by angel's momma View Post
No little boy should ever have to go through all that. It looks like he handles it tremendously well though. Hope the boys had a fantastic Halloween.
He does a very good job during his treatments! He is very brave. At least his treatments help, so it makes them a little easier to do. They had a wonderful Halloween! Thanks!
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Old 11-08-2012, 08:17 PM   #13
NEmel
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What an adorable family you have! My son had to get epogen injections at home - I loathed giving him those. Luckily he has a port for labs and infusions. Woohoo!
Can't wait to read more about your trip. Oh and now I'm in the mood for some Cold Stone... wonder if I can con the hubby for a late night run???
Did you get your ice cream?? We just finished some peppermint stick. As soon as I saw it at the store had to have it!
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Old 11-09-2012, 08:19 PM   #14
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Can't wait to hear more about the progress on his trip.
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Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Previous trips: 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept. 7 2007 Sept. 1-8 2006 Dec. 9-16
2006 Sept. 26-Oct. 3 2005 Sept. 25-Oct. 8 2004 Dec. 11-21 All at POP
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Old 11-10-2012, 01:37 PM   #15
NEmel
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Can't wait to hear more about the progress on his trip.
Hi Angel! Thanks for following along. We are excited to follow your journey as well. Congrats on being approved for your wish!
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