I can’t
believe we are at the end of July. No really, I can't!
The end of
July means we are 2/3 of our way through summer vacation. It also has special
significance this year because this is the first July in a few years that has
not involved a 7-9 day hospital stay and major issues for Natalie. I am so
grateful for this “reprieve” of sorts and so is she! We made changes to her
medication and Mito cocktail she takes each day mid year, and that seems to
have made a huge difference. That is not to say we have been issue free.
Quite the contrary, she has issues of some sort every day. The difference
is they have been more manageable. We have continued to work hard to make sure
we do our part to keep her on a good sleep/food schedule, make sure she has all
of her meds, and make sure she doesn’t’ overextend or isn’t out in the heat for
extended periods of time. Her level of energy varies day to day so we have
ideas, not plans, and often must make adjustments because of how she is doing. Summer
is easier because we don’t have to adhere to a school schedule and can ease
into the day. Our schedule largely revolves Natalie’s symptoms, with more
activities possible on the very good days and a lot taking place before it gets
super hot in the afternoon.
Natalie has
a variety of symptoms, but the ones she deals with daily include fatigue,
shallow breathing, heat intolerance, and migraine symptoms of varying degrees.
The shallow breathing one is newer as of this last year and is something she
deals with every day, with it worsening during times of extreme fatigue or
migraine episodes. She is not in any danger with it, but it is horrible
to feel like you are not getting good, deep breaths.
Even with
the symptoms she still has, it has been SO much better this summer enabling her
to be more active and enjoy summer. As a 4th of July lover, I was
extremely happy to be with friends, family, and fireworks instead of in a
hospital room like last year:). Mama loves her fireworks!
Natalie is
SUPER excited it is the end of July because today she is heading to the
Muscular Dystrophy Association (MDA) Camp. She will be there all week without
us, getting to do all kinds of fun things. Last October we learned that her
condition falls under the MDA umbrella, which was another level of realization
about her situation that her daddy and I had to work through. As an “MDA kid”, she qualifies for various
things, one of which is this camp opportunity. She has been looking forward to
this since the minute she heard, while her daddy and I had to make friends with
the whole idea of her going. I am not going to lie. It makes me nauseous as I
think about dropping her off for the week.
It is the
perfect camp situation for her to be in. The camp is in the Bay Area (because
it is cooler there for her). She will have a one-on-one counselor the whole
time, and her doctor is the physician on site the entire time – obviously she
will be well cared for. And…it is an amazing program with awesome people! She
will be very blessed, and have a wonderful opportunity for personal growth as
well.
The theme of
the camp is “superheroes”, and Natalie is all over that. She has a superhero
outfit packed for every day of the week. When she heard there was a camp dance,
she wanted me to make her a Batman costume with a t-shirt and tutu. I suggested she come up with her own original
superhero instead. Being Natalie, she promptly replied, “Oh I already have one”
and proceeded to tell me all about her superhero alter ego, "Sonic
Energy" including her powers, back story, outfit, and all. (I have to be
honest, every time she says Sonic Energy's name, I just hear JJ Fad's
"Supersonic" in my head.)
So Batman
was scrapped, and we created a "no sew" version of Sonic Energy to
bring to camp according to Natalie's very specific requirements:).
Natalie is
all packed and ready to rock camp, and will undoubtedly have a great week with
activities galore. Mike and I, on the other hand, will not know how to
function. Did I mention our schedule and way of life revolves around that kid? Kyle will probably be tired of all of the
personal attention he receives in her absence, although he will want some when
he is recovering from getting his wisdom teeth pulled Wednesday. I am sure he
will be a big baby:).
Here she is
Natalie in her “Sonic Energy” costume. I love that kid. I love that she is
excited for camp. I love that she lives life to the fullest, no matter what
comes her way. And I love July this year.
