1. Allergy Testing
Over the past couple of years, we had suspected that Alison was developing allergies to multiple antibiotics. The first antibiotic to go was erythromycin, followed quickly by penicillin and clindamycin. "Not a problem," her doctors said, "We still have plenty of choices!" But then went azithromycin, bactrim, fluoroquinolones, and most cephalosporins - all resulted in hives and extensive itching.
In January and February of 2010, Alison underwent allergy testing to see if these were true allergies, or to see if she just is a kid with sensitive skin. Unfortunately, testing for antibiotic allergies is neither simple, nor comfortable. Round one was comprised of skin prick testing, during which we were able to eliminate penicillins due to an immediate and striking reaction. Rounds two, three, and four consisted of something called intradermal testing, which is akin to getting a TB shot...in excess of twenty-one times. It was during this that we were able to rule out everything except for third generation cephalosporins, namely ceftriaxone (Rocephin).
Once she was cleared for that (on a preliminary basis), she was admitted to the PICU for what's called a graded challenge, where they gave her increasingly higher doses over the course of about twelve hourse to see how she tolerated it. Other than the fact that we couldn't get an IV started due to nearly chronic state of dehydration, it went without a hitch, and she was given full clearance for ceftriaxone, the one downside being it's a drug that can only be given intramuscularly or intravaneously.
More recently, Alison was trialed on cefdinir (Omnicef), another third generation cephalosporin similar to ceftriaxone, after it became clear that giving the ceftriaxone IM was not going to be a good option for Ali. First, the injections caused her to develop baseball-sized lumps under her skin that took over a month to disappear. And second, one round of injections isn't enough for her to clear infections. Back to the allergist, and thankfully, she passed a graded challenge for the cefdinir, which gave us an antibiotic she can take orally.
According to each of Ali's specialists (of which there are many), this was easily the worst news we ever could have hoped for.
2. A Renewed Commitment to Advocacy
As a family, we have committed ourselves to two causes over the past couple of years: Children's Hospital Boston, and Mito Action. The first cause, CHB, has been so good to us over the past six years. Yes, six, as we started seeing gastroenterology and cardiology there when Maya was a year old. Thankfully, with the help of two wonderful doctors - Dr. Brown in cardiology and Dr. Rosen in gastroenterology - Maya no longer is seen there. Unfortunately, as Maya's care simplified, Ali's became exponentially more complicated.
The latter cause, Mito Action, is something that we became involved with shortly after Alison was diagnosed with mitochondrial disease. We chose them over the UMDF for a number of reasons. One, it was founded in part by Ali's mito doctor. And two, it uses its money to help families affected by mitochondrial disease now through providing information and support. I am not downplaying the need for reearch (and ultimately a cure) at all, but on a day to day basis, it's Mito Action that I turn to.
As we decided to commit ourselves to these two causes, Garth committed himself to getting in shape and losing weight. He started just about a year ago at 240 pounds.
He started running, and as he started losing weight and getting into shape, he realized that he actually liked it. In September of this past year, he ran in the Mito Action Energy 5K and placed fifth with a time of 19:29. As a family, we raised over $600, and were so lucky to be supported by my brother and his kids, Garth's sister and her kids, our dear friend Debbie and her kids, and our close friend Rosanne and her kids.
A month later, Garth ran in his first 1/2 marathon with hopes of simply finishing. To his chagrin, he ran it in an hour and a half and placed twelfth. It was at this point that he started considering running Boston as part of the Miles for Miracles team to raise money for Children's Hospital Boston. He applied and was accepted, and is now training in earnest. We're looking forward to being able to give back to a place that has given so much to us.
3. Make-A-Wish
In January, Alison was referred to the Make-A-Wish Foundation by Dr. Korson, her mito specialist. Actually, we found out that she was accepted in December, but because of the holidays, it wasn't until January that we were able to meet with Kent and Kim, Ali's wish granters. I'm not sure how much Ali understood, as every time we asked her what her one true wish was, she would ask for something different, and usually for something on a small scale like a new Barbie doll. We started suggesting that maybe she would like to go somewhere for her wish, to which she got the idea that she wanted to go to the zoo.
The visit from Kent and Kim was met with much anticipation. The girls waited by the window for their car to pull up, which it did, but then slowly pulled away: they thought they had the wrong house. Nonetheless, they quickly discovered that they had been in the right place, and the girls erupted in cheers as they walked up the driveway, their arms laden with gifts for each girl.
Maya had decided early on that she wanted to go to Disney (as did mom), but since this was Ali's wish, we both kept our mouths shut when Kim asked Ali for her one true wish. Ali, playing shy, whispered in my ear, "To see the real tree. And go to the zoo." When I relayed it to her wish granters, Maya could no longer contain herself and added, "At Disney!" So, Disney it was.
After several unnerving weeks of travel planning in conjunction with the Massachusetts MAW office, it was finally determined that we would go over April vacation. And even better, the girls' grandparents would be able to join us! A limo picked us up on the morning of Monday, April 19th to take us to the airport. The girls could hardly contain themselves!
All wish children who wish for Disney are lucky enough to stay at the Give Kids the World Village, an amazing resort designed and operated exclusively for kids who are wish recipients. Its founder, Henry Landwirth, is a Holocaust survivor. When he emigrated to the United States, he wanted to do something to make a difference, to give children a piece of their childhood back, something he never had because he was imprisoned in a concentration camp. Everything there is free and is meant to truly give these kids and their families the experience of a lifetime.
As part of the "package," we were granted three days worth of tickets for the Disney parks, two days worth of tickets for Universal Studios/Islands of Adventure, and one day worth of tickets for Sea World. We also received a pin that granted us front of the line access for all rides and attractions, and identified us as a wish family. With that, came lots of "pixie dust." I could go on and on about our experiences over the course of the week, but there are a few that stand out.
1900 Park Fare at the Grand Floridian. We reluctantly honored our reservation after a not-so-great day at Magic Kingdom, and I'm so glad that we did. The food was only okay, but the girls were able to meet Drizella, Lady Tremaine, Cinderella, and Prince Charming. All of the characters were wonderful with the girls, and gave them lots of face time as the girls collected their autographs in their special autograph books.
As much fun as the girls seemed to be having, the adults were feeling like it was time to go and started gathering our things after Prince Charming visited with them. A woman approached us and asked if we could stay just a while longer, that the Prince and Cinderella would be out in a moment to lead all the kids in a special wish ceremony. We continued to stand at the back of the ballroom so that we could make a quick exit as soon as we could.
The wish ceremony was cute, but nothing to lose sleep over, and we again headed for the door. We were interrupted by Cinderella and Prince Charming, who wanted to take the girls to the dance floor for the first dance. Yah, I cried.
The night still wasn't over - we were then led outside to a private courtyard for a meet and greet with Prince Charming and Cinderella.
Magical moment #2 - The Best Friends Breakfast with Lilo and Stitch. After our first day at Magic Kingdom was a flop, I was determined that our day at Animal Kingdom was going to be perfect. Afterall, this was at the heart of Ali's wish. To start the day, we surprised the girls with breakfast with Lilo and Stitch - Ali's two favorite Disney characters at the time. The food was phenomenal, and the character action was great, especially Pluto who had hugs and kisses for us all.
I let our waiter know that we were there on a wish trip and that our daughter would be ecstatic if he could let Stitch know to get her a little extra face time with the furry alien. He was very abrupt and curtly let me know that the characters visit all of the tables. End of story.
Stitch finally made his appearance and almost made it to our table when the music started up for the character "parade." Stitch continued towards our table, where he took Maya and Ali by the hands so that they could lead the parade with him. Yup, I cried again.
Magical Moment #3 - Festival of the Lion King at Animal Kingdom. As we were ushered in, we were told that we were being led to the best seats in the house. Not long after we were seated, a cast member approached the girls and asked for their help in teaching the audience the hand jive. Ali was a bit reticent, but Maya was enthusiastic.
And then at the end of the performance, both girls were again asked to go out and join the cast in the grand finale. Ali was too overwhelmed, but Maya went and seemed to enjoy it.
Our hope now is to someday go back to Disney and visit Give Kids the World (though we can never go back and stay as guests), but if we learned nothing else from this week, we learned the importance of just being together without any distractions.
4. The Big Give
With the whole MAW experience came something called the Big Give, a.k.a. "the kindness of strangers." Basically it's a group of folks over on "the DIS" (a message board for Disney fanatics and planners) who have committed themselves to adding a little something extra for families going on wish trips to Disney. Some people sew, some make autograph books, and still others supply "pixie dust." The generosity shown towards the girls was at times overwhelming. They made dresses for Ali that could accommodate her feeding tube, showered Maya with gifts and attention, and even included the adults in their gift giving. I think the pictures will speak for themselves.
What a selfless, thoughtful, talented group of people, exemplifying the adage, "the kindness of strangers."
5. The First Day of School
In September, Maya started 2nd grade and Ali started kindergarten. The only reason that Ali has been able to go to school is through the cooperation of the Narragansett Regional School District, and the dedication of her building principal, the custodial staff, her classroom teacher, her classroom aides, and her 1:1 nurse, Miss Alison. They have all gone above and beyond to try and preserve her health, and to allow her to have the most normal, positive experience possible. We can't possibly thank them enough.
Unfortunately, with the good comes the bad, and we have seen a fair amount of disease progression. We are still thrilled that she is doing as well healthwise as she is, but it is nonetheless tough to see. She has been on Omnicef for the better part of the fall and early winter, and has already been hospitalized once for management of intractable constipation despite a pretty intensive bowel regimen. Many of her doctors are pushing for her to start IViG in hopes that her body will be better able to fight infections. She has also been a lot more fatigued than in the past, and recently has been complaining of pins and needles in her hands and feet (peripheral neuropathy). She's been having more difficulty swallowing, and has greatly limited her repertoire of food.
Still, we hope and we pray that the next year will bring better treatments (or even a cure) for those struggling with mitochondrial disease.
Happy New Year to you and yours.
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