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!
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!
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! 
. 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!
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! 
We enjoyed 70 degrees yesterday and the boys were outside almost all day, good thing today it is freezing and 38! Only in Nebraska!! It has been almost 3 weeks since Carter's wish granters have been here, so hoping we hear something in the few weeks. Even though it will probably still be a while before we go, having dates makes a big difference. Hope everyone has a wonderful week!
