Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

Discussion in 'Pre-Trip Reports and Plans' started by kellyw8863, Dec 12, 2009.

  1. kellyw8863

    kellyw8863 DIS Veteran

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    Okay, I've been hesitant to start one of these, because I haven't been totally convinced that Ali was going to choose WDW as her "one true wish," but now she's stuck on the zoo, and more specifically, seeing the giraffes. So I'm thinking Animal Kingdom should satisfy that, right?!

    Now to introduce the members of our family, starting with my youngest, Alison, since she is the reason why I am here.

    Alison is four years old and has been diagnosed with mitochondrial disease. Basically what that means is that her body is incapable of producing the energy necessary to sustain life. This occurs at the cellular level, so even though she looks great, what's going on inside her body isn't always so great. Individuals who are symptomatic and diagnosed before the age of five generally have a poor prognosis with an 80% mortality rate by the age of ten. Currently, there is no cure and no real treatment. Our best bet for the time being is a collection of vitamins, antioxidants, and cofactors.

    Though she was only diagnosed this past June, she has had problems since birth. She was hospitalized for the first time when she was two months old because she would choke while nursing and turn blue. However, these spells were attributed to reflux, and her GI didn't look in to it much further. By the time she was four months old, she was an exceedingly miserable baby who cried most of the hours of the day and didn't sleep - ever. It was during one of these "episodes" that we finally drove her two hours to Children's Hospital Boston because we simply couldn't do it any more.

    A series of abdominal x-rays showed that her large intestine was so distended that it was the size of an adults. Her GI began thinking Hirschsprung's Disease, so she was hospitalized and underwent an inpatient clean-out (think: colon prep for a colonoscopy) and tons of testing. We were so, so fortunate to be patients in one of the top motility clinics in the country but even still, her GI couldn't find a source for her intestinal problems.

    [​IMG]

    Fast forward a couple of months and right around her first birthday, she had her first MRI. The primary reason was to assess some crazy head growth in that at a year old, her head was the circumference of a full grown adult's. However, her spine was scanned as well and it was discovered that she had a tethered spinal cord where the end of her spinal cord was attached to something at the base (it should be free-floating). Because of the insane constipation issues (three inpatient clean-outs in a six month period) and the fact that she was also showing some developmental delays (not walking and barely crawling, or even rolling), she underwent spinal cord detethering three weeks later, which was to be her first major surgery. Following the surgery, her constipation improved and she started walking. We thought that perhaps her "issues" were beginning to resolve. Little did we know this was just the beginning.

    [​IMG]

    Alison grew into a very "sick" little girl. She always had something - sinus infections, pneumonias, and ear infections. She was still choking when she drank liquids, so when she was two years old, she was referred to an otolaryngologist to investigate why she was having so many problems swallowing. She had a "triple scope" (endoscopy, bronchoscopy, and laryngoscopy) that revealed something called a laryngeal cleft, which basically is a hole in the larynx that allows fluids to pass from the esophagus to the trachea and into the lungs. That explained why she was so sickly and why she got so many pneumonias. The doctors also discovered that she had quite a bit of lung damage from aspirating so much.

    She was scheduled for surgery in January of 2008, which would be most challenging since it is a very delicate procedure and required a period of intubation post-surgery. I will never forget watching her as she was wheeled out of the OR "bagged," even though it was only because of the endotracheal tube. She spent the next 24 hours in the ICU sedated and intubated. Her surgeon did not give her a good prognosis saying that the size of the cleft could not account for the degree of aspiration, and that we should start considering neuromuscular diseases as the cause.

    [​IMG]

    Three months later is the first that mitochondrial disease was mentioned as a possibility. Her GI felt that it was logical considering the issues that she had with her GI tract (swallowing and colon), as well as all over low tone that was not resolving with age nor physical therapy. Her neurologist felt otherwise, and after the two of them battled it out, Ali was scheduled for a muscle biopsy the following fall. We received the results approximately three months later that showed serious defects in complex I and IV enzyme activity. Blood work and genetic testing supported this result, and Ali was formally diagnosed in June of 2009.

    [​IMG]

    To date, Ali has a number of medical diagnoses including macrocephaly, astigmatism, dysphagia with chronic aspiration, reflux, laryngeal cleft (repaired), asthma, an atrial septal defect, tachycardia, bilateral hip dysplasia, tethered spinal cord (repaired), global hypotonia, hypermobility, multiple drug allergy syndrome, and autonomic dysfunction. I think that's it. For specialists, she is regularly followed by complex care services, neurosurgery, neurology, cardiology, opthamology, orthopedic surgery, pulmonary, gastroenterology, allergy/immunology, and metabolics. She wears bilateral AFOs, has problems with fatigue and chronic pain, and has a g-tube. According to her GI, we are definitely looking at some type of ostomy in her future, but we're trying to put it off for as long as possible. Over the course of the day, she takes nine different medications and receives 1500mls of fluid through her g-tube.

    Despite everything that she has been through, she has faced it all with grace and a sense of determination that amazes me. She is funny, spirited, and oh so smart. All in all, I would say that she totally deserves to receive her "one true wish."

    Thanks for reading - I had no idea that this would be so long! I'll have to come back to post about the rest of the family and start with the planning questions - off to do some shoe shopping!

    Kelly
     
  2. yinyanggirls

    yinyanggirls DIS Veteran

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    Your PTR is started! Hurray! Ali has been through so much, as have all of you. We can totally relate.

    If you get the "Unofficial Guide to WDW" there is an accompanying website that shows the predicted crowd levels throughout the year. The week of 4/17 starts out a little high (7s if I remember) but goes down to 4 or 5 by the end of the week. We are planning to do the less crowded parks early (SW, US, IOA) and then end the week with Disney. Let me know if you want any more specifics. I hope you get your dates soon! And it's never too early to reserve any meals you might want. You can always cancel later....
     
  3. Momofwishkid

    Momofwishkid DIS Veteran

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    Yay another wish PTR! Ali seems like an amazing little girl. Im sorry she has gone through so much. I cant wait to hear more about your planning and family.
     
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  5. kellyw8863

    kellyw8863 DIS Veteran

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    Hello ladies, thanks for stopping in!:goodvibes You know, she has been through a lot, but it's all she (and we) knows, so it's all good. It's hard to wish away a disease (or disorder, or condition, etc.) when that is part of who your child is. With all my heart, soul, and being, I wish that she didn't have to endure the surgeries, procedures, ill effects, etc., but selfishly, I also love who she is, and I think that everything she has been through has given her a sense of spunk that is hard to otherwise imagine. Does that make sense?

    So on to our other children...

    Maya is six years old and the big sister. In many ways, she was almost "sicker" as an infant than her sister was. She was a happy baby except for when I tried to feed her. Then, all heck would break loose. She was put on reflux meds, which helped only minimally. When she was three months old, she was found to have a rather large atrial septal defect (Are you sensing a trend here? Yes, heart defects run in my husband's family, and he has the scars to prove it:laughing:), but her cardiologist did not feel that the ASD had anything to do with her eating issues. At four months, she was officially declared "failure to thrive" and had a feeding tube placed.

    [​IMG]

    We continued to have "issues" throughout her first year and despite the fact that she was 9.5 pounds at birth, she had yet to even double her birth weight by the time she was a year old. At one point, her pediatrician even accused me of not feeding her and had her admitted to the hospital under the supervision of a social worker. As horrifying as it was to be accused of something so awful, it was a true turning point for us. We left her GI and pursued treatment at Children's Hospital Boston. Prior to the accusations, we had been hesitant to take that route because after all, Children's was for the "really sick kids," and except for Maya's weight and "happy to starve" attitude, she was as healthy and happy as could be.

    [​IMG]

    We were hooked up with a fabulous GI at Children's who reassured us that we were doing everything right, and that Maya's distaste for eating had nothing to do with us. Within six months, she had her diagnosed with gastroparesis and prescribed medication to help her stomach work better. It was like a miracle - for the first time ever in her life (at almost two years old), Maya asked for something to eat. We had turned the corner.

    Now at six years old, Maya's heart defect has resolved and she is no longer on medication to help her eat, though she is still quite picky and on the small side. She is in first grade, smart as a whip, and loves the Disney princesses. Every time Ali says her wish is to go to the zoo, Maya adds in "at Disney." She wants to make sure that we get there.:lmao:

    [​IMG]

    Unfortunately, the grocery store and other chores are calling me. I'll be back later to finish the introductions!
     
  6. pipersmom

    pipersmom DIS Veteran

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    Hooray! I'm glad you started your PTR even without dates, I did the same thing and I think it makes the time go faster :) The girls are so sweet. I love the sense of community here among the wish trippers, you can really tell when someone "gets" it, and in my eyes, any support is a good thing! I've met a lot of very cool other people on my PTR as well, as I'm sure you will. Looking forward to reading more about you and your family and trip preparations!
     
  7. Momofwishkid

    Momofwishkid DIS Veteran

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    Maya is just adorable. Im glad her tummy issues are all better Im sure that was hard to go through.
     
  8. yinyanggirls

    yinyanggirls DIS Veteran

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    Can't wait!!!
     
  9. cantwaittoseemickey

    cantwaittoseemickey DIS Veteran

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    Can't wait to hear more about your lovely family. Welcome!
     
  10. kellyw8863

    kellyw8863 DIS Veteran

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    Hey, ladies, thanks for reading! I can't believe how incredibly busy things have been! I'll need to set aside time later to finish introductions - work is killing me!
     
  11. yinyanggirls

    yinyanggirls DIS Veteran

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    No worries! You've got plenty of time. ;)
     
  12. dmbfan

    dmbfan DIS Veteran

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    Hey Kelly...have not heard from you in a week, how are things? How did the apt with Dr K go? Any word from the wish granters yet?

    Next week when your out of school, give me a buzz....:wizard:
     
  13. kellyw8863

    kellyw8863 DIS Veteran

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    Things here have been crazy! I've had tons going on at work in addition to the usual stuff. I'm so ready for vacation! The appointment went okay. He confirmed what we already knew, that the antibiotic issue is huge. It's really going to impact our ability to treat infections aggressively, which is what he relies on to prevent regressions. It's really quite overwhelming if I stop to think about it (which I don't;)) The good news is that we hammered out a fantastic acute illness plan for when she gets sick. It was such a productive appointment since she wasn't actually with me.

    No word from the wish granters yet, but I did break down and call the Springfield office today. She confirmed that two granters had been assigned and said that if we don't hear by next Wednesday to call back and let her know. I hate the not knowing!

    How are you guys doing? Thanks for posting the Starlight photos - they came out great! I'll try to post ours tonight. We just got the flash drive with all the pictures on it yesterday. How is your Disney planning coming along?
     
  14. dmbfan

    dmbfan DIS Veteran

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    Hey...so glad your appt went good...and that you got a good plan in place, that always makes a huge difference.

    I sent you a message on facebook, so if you get a chance to go read it.

    Our Disney trip is pretty much planned and done...all I need to do a week before we leave is have the HHC sent out his stuff to the resort. We are also just waiting to hear what night we are going to volunteer at GKTW, all I know is we are doing a 5-9pm, just not sure what night.

    Give me a call next week if you want, I have some more stuff to tell you if you go to Disney...:wizard:
     
  15. kellyw8863

    kellyw8863 DIS Veteran

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    I did get your message, thanks! I'm hoping that we can catch up next week. Will travel for lunch, if you're up to it!:goodvibes

    That's awesome that your planning is done. You use NEHT, right? And they'll ship the stuff down there for you? Not that we have tons of stuff that Ali needs, but that would be awesome if we didn't have to schlepp her formula, bags, and all that stuff. I'll have to look into that!
     
  16. kellyw8863

    kellyw8863 DIS Veteran

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    Okay, a brief moment of quiet, so I'm going to try and finish up introductions.:cool1:

    Gabriel is seventeen years old and the newest addition to our family. Last January, I was walking through the lobby of the high school where my husband and I both teach, and I ran into Gabe who was in the process of being removed from his home by DCFS. I had Gabe in class the year before, and my husband also knew him from winter track. We talked about it and couldn't really come up with a reason NOT to take him in, so two days later, he was placed with us. This was last January, and I can't imagine life any different.

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    We have been truly blessed, as he has been a wonderful addition to the family. The girls both adore him, and he has taught my husband and I so much about life. Every day, I am amazed that he could have endured what he did for as long as he did with such grace. It really is difficult to explain what a good kid he is without actually meeting him.

    Now for my husband and I, we have been married for eight years and together for ten years. We met at a private school for children with severe special needs and were both in a master's program to receive degrees in teaching children with intensive special needs. I eventually decided that wasn't for me and moved to western Massachusetts to pursue a master's degree in English education. He followed, and the rest, as they say, is history. We have a very naughty chocolate lab named Jake and an equally naughty kitty named Zoe.

    When all is said and done, we are so thankful that we live such a charmed life and we couldn't be happier.

    So that's it for our family! Thanks for reading!
     
  17. pipersmom

    pipersmom DIS Veteran

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    Afternoon, Kelly :)

    Don't worry about shipping stuff down until after you talk to your wish coordinator, I think most chapters will pay & make the arrangements for that type of thing as part of the wish. Our chapter is paying to rent a vest for Piper while we're there so I don't have to drag ours all over the place!

    Gabe is so handsome! You all are so wonderful to take him in, we need more people and teachers in the world who show that type of empathy towards kids in general. :love:
     
  18. Momofwishkid

    Momofwishkid DIS Veteran

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    Hi Kelly,
    What an amazing family you have. Gabe definetley sounds like he has made the fam complete. Im so glad he was able to find you and your DH. Cant wait to read more.
     
  19. dmbfan

    dmbfan DIS Veteran

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    Yes, NHT shipped all of Jake's TPN, IV fluids, all his supplies, including meds. They made sure it was there by Friday, and we go there Sat. We did not have to pay for anything. Our MAW chapter does not do going away party's and did not pay for his supplies to be shipped. Do you have a nurse at NHT, or do you go thru the enteral department?

    The Village will supply u with an IV pole.
     
  20. kellyw8863

    kellyw8863 DIS Veteran

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    Thanks, ladies! He truly has made our family complete. We are so lucky we found each other!

    Christine, it was great talking with you tonight! I swear, we just need to get together outside of the hospital where we can actually chat. We do not have a nurse through NEHT - we just go through enteral with varied results. Depending on where she is at when we do finally go, we may just as well bring our own stuff with us and then buy Pedialyte as we go from Wal-Mart down there. That is good to know about the IV pole, though. It's easier to use in the dark then just tossing everything in the back pack.

    Well, the news of the evening is that we did hear from our wish granter!:dance3::dance3: I actually screened the call the first time because I recognized it as a local name and number, and was afraid it was a parent from my husband's track team calling to yell at him for punishing the kids at practice today (long story, but they deserve it). The second time, I answered the phone because I was afraid it would wake up the girls.

    He did ask if we had any idea what Ali would wish for, so I did tell him that the one thing she has been consistent with is asking for the zoo. He kind of laughed and said, "Well, this should be interesting." He said his schedule is pretty booked up between now and the first of the year, so unfortunately, it doesn't look like we will meet until after the 4th. Kind of a bummer, but at least I feel better knowing that things are moving in the right direction!

    So in the meantime, we'll just enjoy the holidays and keep praying for health. The girls' child care provider has been bringing her sick child here to work with her. The first day wasn't so bad because he was only coughing a bit, but by today, he was truly hacking up a lung. Not a good thing for a kid with mito, asthma, and chronic lung disease who cannot take any antibiotics outside of the picu. We need her to stay healthy!
     
  21. kellyw8863

    kellyw8863 DIS Veteran

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    Okay, small world moment. Ali's wish granter is indeed the father of one of my husband's athletes and student where I teach. Hilarious.
     

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