Well, I had to quote the Hunger Games. Thanks to Tiffany (our Nanny) and to Mr.
Jagger who was doing well at the moment, we were able to take a few hours
break and go see the Hunger Games. It was the first movie we were able to see
at a theater in almost 2 years. Life has been very busy and going to a movie
was surely not on the priority list. We went to the local Movie place that serves food so we
even killed two birds with one stone..lunch and movie!!
It was nice getting out and having a date with my lovely wife. And I also found
the movie to be very good, I believe it did justice to the book, which is very
hard to do!
On March 18th, I attended my first UMDF United Mitochondrial
Disease Foundation) Chapter meeting. It was very good, and I was able to meet
several parents that also have Mito kids. Sometimes it is good to meet people
that can understand your everyday life struggle first hand.
One of the mom present at the meeting (Tiffany) introduced
me to Dr. Ke, who is another leading Mito doc in the country. I was able to
converse with her for about 15 minutes and decided to set up an appointment at
her office so she could meet Jagger. The usual wait time to get in to see Dr.
Ke is about 4 to 6 weeks, but Tiffany had an appointment two weeks later and gave
us her time slot. That was so nice, so if she reads this, I want to say thank
you one more time, your kindness was greatly appreciated by both Annett and I.
So on March 28th, after switching the car seat which had
been sitting in our garage for months (hoping the seat and the forward facing
position will make the trip more pleasant for Jagger), we headed to Dr. Ke
office which is about a 30 to 40 minutes drive from us. Jagger actually did
pretty well during the trip and barely complained at all. However, I must say
it is getting harder and harder to travel with him. He requires so much
equipment such as feeding pump, suction machine, meds, etc that it is an
expedition just to go down the road. Luckily this time, we did not have to take
his oxygen tank with us!
Annett and I are both very impressed with Dr. Ke, she took
her time going over Jagger’s condition, explaining what we should expect,
answering any questions, and we were there for 2.5 hours. In all our dealing
with the medical field since Jagger was born, we never had a doctor dedicated
so much time to him!
We discussed a drug trial that could be beneficial for
Jagger and she is trying to see if she can get us in. However, that would
probably require for us to move out of state for a few weeks/months, but we
will get more details in a few weeks. Unfortunately that drug is not a cure for
his disease as there are still no cure, but it can make his remaining life
better. I talked to a few parents that have been on the trial and they have
seen great improvements in their child’s abilities/development, so hopefully it
will do the same for Jagger, if we get approved!
The way back home also went OK, so maybe Jagger’s new car
seat will make future travels a bit easier. One can only hope!!
No comments:
Post a Comment