Several of you have mentioned my blog recently and it’s been
a while since my last post. I decided to try to take as real of a
vacation as I could this Christmas and that included a vacation from social
media, technology, etc. Most of my vacation time is spent in waiting
rooms, Dr.s Office, hospitals, etc. and after the past year (past two years
really), I needed to focus on my family and myself.
I never updated the results of the “Be The
Match” run/walk. Thanks to many of you, I was the second place individual
fundraiser with $1245 and Coleson’s Crew came in 4th overall with
$2450. We had a good team of walkers join us during the race including
Coleson’s BMT brother Caleb and his family from Illinois. It was a pretty
warm day and Coleson decided he didn’t want to be in the stroller so we carried
him the 3.1 miles! In November my good friends Jenn and Janice along with
Sole Sports put on a Ronald McDonald House dinner, (I think that makes 5 RMH
dinners in Coleson’s honor in 2014) and Sole Sports wants to be involved in
next year’s Be The Match run/walk. I’m looking forward to their
support. 
Coleson had his 4 top front teeth extracted. Going through the BMT process and the chemo makes the kiddos teeth weak, thin and prime for cavities. Through much of the BMT, their gums are swollen such that you can barely see the teeth, much less brush them. So this Christmas, he really did want his, “two front teeth” plus the next two as well! Peyton was curious if the tooth fairy was going to come and how much money she was going to leave him. However, I did not want to take the excitement away from Coleson of losing his first tooth and putting it under the pillow so I told Peyton that I was going to ask the Tooth Fairy to wait until he did lose his first tooth naturally and then we would put all of them under the pillow. It was funny to watch Coleson explore his gums with his tongue and to watch all the silly faces that resulted from it. He had a hard time keeping binky in his mouth too so I was hoping we would be able to get rid of it for good. However, he’s gotten used to the gap now and has found a way to keep binky in, although it does fall out more at night. He doesn’t look that much different since his teeth were so little and still partially in the gums yet anyway.
He had to have it done at Phoenix Children’s Hospital under
sedation and so it was a very nerve wracking procedure for me. I actually
went into the OR room and held him as they masked him which was a bit tough for
me. However, he is starting to remember what is about to happen when the
nurse brings out the Purple or blue hospital PJs for him to change into and I
hope it comforted him just a little to have me hold him during that scary time.
During the holidays different organizations and groups sponsor and decorate
Christmas trees in the hospital. We were in a different OR than the
normal OR and there was only a single sponsored Christmas Tree. As luck
(or fate) would have it, it was the Sole Sports sponsored tree. It made
the process a little easier knowing our friends were “there” with us!
And then there was Disney World! (And the MPS Conference too.) We had a great first day at Disney World with the kids. Peyton got to ride Splash Mtn. and Thunder Mtn. (but not Space Mtn. since she wasn’t tall enough). The kids also got to meet Cinderella, Rapunzel and Tinkerbelle (Paul’s favorite) but if you ask Peyton her favorite part was going to Bippity Boppity Boutique where she was made over into a princess. I don’t know how she sat still through the hair as she doesn’t sit that well for me when I do her hair… She however embraced the part and curtsied thereafter to anyone who spoke to her. I was feeling like we conquered the first day pretty well and were right on track to make it back to the hotel to check in for the conference on time until she wanted to go on the new 7 Dwarf’s mine ride. She and Paul left Coleson and I at the Dumbo play structure (a hidden gem we discovered way too late in the day). 1 hr and 15 mins later… needless to say, we were a little late to the dinner and missed getting back out of the hotel for Mickey’s Christmas.
The conference came and went so fast and like Disney world,
I think you have to go there once to determine how to get the most out of it in
future years. We got to reconnect in person with some of our MPS friends
which being that we are all so far apart was probably the best thing about the
conference. I also enjoyed meeting all the rest of the MPS 1 BMT families
that I did not yet know and hearing their stories. I also enjoyed the
talks from the Doctors and Researchers about new trials and advances in the MPS
world. Being an “orphan” disease means MPS does not get a lot of funding
and grants and I am sad to hear that much of the research/trial funding is soon to
expire. Donating to the National MPS Conference is one way you can help
keep these trials and research alive. The conference is a very
overwhelming and heartbreaking experience at the same time. Not all of
the MPS diseases have treatments, some treatments have just become available
for some of them and in general no matter what type of MPS one has, it is a
nasty disease. We are in the lucky group… MPS 1 kids who have BMTs.
(If you can imagine we are lucky). There are families there who have lost
their kids or who are watching their kids regress day by day knowing that one
day the regression will stop forever (but not in the positive way). I too
know that Coleson’s time here is shortened than the average person but we have
hope that he will make it to his 20s and maybe into his 30s. Of
course we still have hope that it will be much longer than that but we don’t
have any evidence that that is possible yet. So going to an MPS
conference comes with mixed emotions.
Also at the conference the 24 hr stomach flu was going
around. Coleson got it Thursday night but was good to go by noon the next
day while Paul got it Saturday morning and couldn’t make it out of bed the
entire day. I took the kids and met my family at Magic Kingdom but by
noon I wasn’t feeling so good myself and left Peyton with my family and Coleson
and I spent the rest of the day in bed as well. I didn’t have it as bad
as the rest but it made packing for our 5:00am departure time a tremendous
task.
Then we headed to Michigan for Christmas. The first
without my Dad. And though we carried on just as if he was there, there
was obviously a big void. We made it through without a lot of tears but my sister, Jae, made us memory books of Dad and Aggie had Teddy Bears made out of my Dad’s
flannels and overalls for all the grandkids which made holding back the tears
pretty difficult. Included with the bears were pictures of each kid with
Grampa wearing the clothing the bear was made from which made the bears extra special. 
We made it back to AZ to enjoy a week’s worth of vacation
and I feel like I was able to get a lot of things done that I’ve had to put off
over the years. We were blessed with more gifts from “Coleson’s Friends”
which is very helpful when we are approaching the new year and a new set of
medical deductibles. We basically hit the Maximum out-of-pocket costs
within the month of January so we are very appreciative of all of Coleson’s
Friends, especially O&C who have become our extended family and biggest supporters.
I realize this blog has gotten too long to include the
events of January so I will have to pick this back up in another week or
so.
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