PrincessTeacher
Earning My Ears
- Joined
- Aug 19, 2017
- Messages
- 40
We are so excited that we have been granted Tanner's wish to visit WDW via The Dream Factory, Arizona Chapter.
Tanner was born in August of 2010 three days early. At the time of his birth we thought everything was completely normal and that he was a healthy almost 9 pound baby. After being in the hospital for 24 hours Tanner had still not had a bowel movement. This caused concern for the doctors, and they decided to keep us in the hospital for an additional night for observation and to try a suppository. Nothing worked, and we were discharged with directions to go straight down to Seattle Children's hospital. We were told that a surgeon who specialized in rectal malformations would be waiting for us to arrive and examine Tanner. We arrived at Children's, and saw the surgeon. He did find that Tanner had an imperferate Anus, which means that his anus did not match up with his rectum. Tanner was immediately admitted to the NICU and had a 9 hour surgery just a couple of hours after admittance. We breathed a sigh of relief when everything turned out well, and we thought this was the end of our medical issues with him. Boy we're we wrong! A few days later we found out that Tanner also had Hypothyroid, which was discovered on his newborn screening. At 5 months old, Tanner developed a bad case of RSV which resulted in a two week hospital stay. The episodes of RSV continued and frequent hospital stays (2-4 weeks at a time) became a part of daily life. Tanner was eventually placed with an NG tube to allow fluid to stay away from his lungs, as the doctors found he was aspirating fluid. This helped with his lungs and colds, but in the midst of all of this Tanner was still not rolling over, sitting up, starting to crawl, etc. At 10 months old, we thought it was because of his long stays in the hospital without any opportunities to move around or be on the floor for tummy time, etc. at 12 months old Tanner had a GTube placed, and hadn't to have a cyst removed from his thuroglossal duct (under the chin) that became infected. By the time Tanner reached 14 months old the neurodevelopmental pediatrician decided to do some tests to determine if Tanner had a form of Muscular Dystrophy, which thank goodness came back negative. They went ahead with a genetic test that determined that Tanner had a chunk of chromosome 14 missing. According to their research records, they only had information on 4 other children with the same part of the chromosome deleted. This was an extremely scary time for us. We came to terms with his diagnosis and decided to take one day at a time and just love Tanner for who he was. This started a sleuth of specialty visits and in home therapy visits! Fast forward a couple of years and Tanner is doing great. He still can't walk for too long (maybe 20-30 steps) without the help of a walker, but even with he walker he can only walk 10-15 minutes before becoming tired and falling frequently. So we use his wheelchair when we know we will be out for long periods of time. He was diagnosed by the neurologist with hypotonic Cerebral Palsy. This is a less common form, as he doesnt have spastic movements or tight muscles, but low muscle tone. Every day he brings us joy and has taught our daughter patience and understanding as a sibling. Our daughter Whitney was only 20 months old when Tanner was born, and it was very difficult to navigate caring for Whitney and making sure she had what she needed while being there for Tanner also!
Boy, that was a long history! I will post more about how we came to be granted Tanner's wish trip in the next post!
Tanner was born in August of 2010 three days early. At the time of his birth we thought everything was completely normal and that he was a healthy almost 9 pound baby. After being in the hospital for 24 hours Tanner had still not had a bowel movement. This caused concern for the doctors, and they decided to keep us in the hospital for an additional night for observation and to try a suppository. Nothing worked, and we were discharged with directions to go straight down to Seattle Children's hospital. We were told that a surgeon who specialized in rectal malformations would be waiting for us to arrive and examine Tanner. We arrived at Children's, and saw the surgeon. He did find that Tanner had an imperferate Anus, which means that his anus did not match up with his rectum. Tanner was immediately admitted to the NICU and had a 9 hour surgery just a couple of hours after admittance. We breathed a sigh of relief when everything turned out well, and we thought this was the end of our medical issues with him. Boy we're we wrong! A few days later we found out that Tanner also had Hypothyroid, which was discovered on his newborn screening. At 5 months old, Tanner developed a bad case of RSV which resulted in a two week hospital stay. The episodes of RSV continued and frequent hospital stays (2-4 weeks at a time) became a part of daily life. Tanner was eventually placed with an NG tube to allow fluid to stay away from his lungs, as the doctors found he was aspirating fluid. This helped with his lungs and colds, but in the midst of all of this Tanner was still not rolling over, sitting up, starting to crawl, etc. At 10 months old, we thought it was because of his long stays in the hospital without any opportunities to move around or be on the floor for tummy time, etc. at 12 months old Tanner had a GTube placed, and hadn't to have a cyst removed from his thuroglossal duct (under the chin) that became infected. By the time Tanner reached 14 months old the neurodevelopmental pediatrician decided to do some tests to determine if Tanner had a form of Muscular Dystrophy, which thank goodness came back negative. They went ahead with a genetic test that determined that Tanner had a chunk of chromosome 14 missing. According to their research records, they only had information on 4 other children with the same part of the chromosome deleted. This was an extremely scary time for us. We came to terms with his diagnosis and decided to take one day at a time and just love Tanner for who he was. This started a sleuth of specialty visits and in home therapy visits! Fast forward a couple of years and Tanner is doing great. He still can't walk for too long (maybe 20-30 steps) without the help of a walker, but even with he walker he can only walk 10-15 minutes before becoming tired and falling frequently. So we use his wheelchair when we know we will be out for long periods of time. He was diagnosed by the neurologist with hypotonic Cerebral Palsy. This is a less common form, as he doesnt have spastic movements or tight muscles, but low muscle tone. Every day he brings us joy and has taught our daughter patience and understanding as a sibling. Our daughter Whitney was only 20 months old when Tanner was born, and it was very difficult to navigate caring for Whitney and making sure she had what she needed while being there for Tanner also!
Boy, that was a long history! I will post more about how we came to be granted Tanner's wish trip in the next post!
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to the DISboards! Congrats on the wish trip and enjoy the planning.
About two years ago it was suggested that Tanner obtain a walker to help him gain more gross motor skills. We put in a prescription for a walker and a wheelchair (as he was growing out of the stroller we had) and it was denied by insurance. The reason for denial actually said "walker is not needed since it will not be used for rehabilitative purposes!" I called in to ask what that meant, and the representative mentioned that since he hadn't walked before it was not necessary to obtain a walker for any reason. Ok! Well fast forward a couple of months, and my sister and I were going around to different garage sales and we stumbled upon one that had a pediatric walker for sale. When I asked her how much she wanted for it, she told me a $1, and handed me a card saying that she worked for a company called Raising Special Kids. I was thrilled with my purchase and we got almost three years of use out of the walker! In my struggles to get insurance to pay for a wheelchair I called the woman I had met and asked if she had any advice for me. During the conversation she referred me to HopeKids, which is a wonderful organization. So we signed up for HopeKids. On the HopeKids Facebook page, this woman posted a question, asking for parents to say what their child's wish would be if they were granted one. I mentioned in a comment that Tanner would love to go to Disney World or Disney Hawaii! About a day later, the lady sent me a private message and asked me to call a woman who was the director for the Dream Factory of Arizona. So, I called her and we chatted about Tanner's dream, and she emailed me an application. I filled it out (this was June of 2016!) and emailed it to her, and I never heard anything back from her. I had actually forgotten all about the dream when out of the blue the same gal from the Dream Factory contacted me via email to ask if we would still like to be considered for a wish trip for Tanner. I was thrilled and said of course! She sent me what felt like a million more forms, had a home visit from her husband, and a little more than a week later she called me say that we had been chosen for a trip leaving in September of 2017! This came on so fast, and now we are less than four weeks away! It is kind of nice that it is coming up so soon, because I have a hard time with patience!!! BUT......I am a planner, and it is hard for me to not know all the details (spending money, etc.)!
I am so excited to see what the amount is. I am such a planner, and we are on such a strict budget at home that I feel uncomfortable making plans for dining reservations and other things without knowing how much to expect. We want to take the kids to Mickey's Not So Scary Halloween Party, and are hoping to have the expense check cover the tickets to this, and still have enough for other meals and souvenirs without nickel and diming too much! I am looking forward to potentially having a vacation where I don't have to think about money first!!! Our wish grantor also said she would be by the day before our trip to drop off goodie bags and surprises for the kids.....then she wanted to know things that my husband and I would like! I didn't even know how to answer that question!!! I thought this was all about Tanner and our Daughter, but it turns out they want to spoil all of us! I almost feel uncomfortable accepting such generosity.....but I am trying to humble myself and enjoy each moment, because this won't happen again!
It was an exciting day! I got home from a long week at school (I teach 2nd Grade) to a package from mAAgic flight! It has tshirts, a Disney gift card, luggage tags, other little goodies, and even a letter to Tanner from Buzz Lightyear! It really made the trip feel real! I will try and post a picture of the package later!
