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Old 12-12-2009, 09:45 AM   #1
kellyw8863
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Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

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.



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.



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.



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.



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
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Old 12-12-2009, 10:06 AM   #2
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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....
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Old 12-12-2009, 10:57 AM   #3
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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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Old 12-13-2009, 09:40 AM   #4
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Hello ladies, thanks for stopping in! 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), 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.



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.



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.



Unfortunately, the grocery store and other chores are calling me. I'll be back later to finish the introductions!
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Old 12-13-2009, 10:29 AM   #5
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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!
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Old 12-13-2009, 06:27 PM   #6
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Maya is just adorable. Im glad her tummy issues are all better Im sure that was hard to go through.
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Old 12-14-2009, 09:41 PM   #7
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Quote:
Originally Posted by kellyw8863 View Post
Hello ladies, thanks for stopping in! 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?


Makes perfect sense. Phoebe's cognitive delays make her so sweet and innocent. She has her stubborn, whiny moments, but she is truly an angel and while it's hard to adjust to this life we never imagined, I can't imagine HER any other way.

So on to our other children...

Maya is six years old and the big sister.
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.



That's the happy "ending" one can only hope for - for issues to resolve, for answers to questions, for no more surgeries or medications! What a blessing for her to have come through that part of her life.

Unfortunately, the grocery store and other chores are calling me. I'll be back later to finish the introductions!
Can't wait!!!
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Old 12-15-2009, 11:06 AM   #8
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Can't wait to hear more about your lovely family. Welcome!
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Old 12-16-2009, 02:55 PM   #9
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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!
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Old 12-16-2009, 04:12 PM   #10
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Originally Posted by kellyw8863 View Post
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!
No worries! You've got plenty of time.
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Old 12-16-2009, 08:41 PM   #11
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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....
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Old 12-18-2009, 03:43 PM   #12
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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....
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?
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Old 12-18-2009, 06:38 PM   #13
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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...
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Old 12-20-2009, 11:06 AM   #14
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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...
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!

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!
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Old 12-20-2009, 11:28 AM   #15
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Okay, a brief moment of quiet, so I'm going to try and finish up introductions.

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.



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!
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