Sparking the Fight of Compliance
This is a
year of blossoming and growth for all the children. Particularly it seems for
our oldest child as she reaches the end of elementary school. It is on my mind
always that this is the last year that they will all be together at the same
school. I guess I didn't realize I would only have two years of that and once I
did the last year seems very precious. Also thinking of the schedule change and
location change and routine change that comes with next school year, this same
daughter starting junior high and leaving the home 50 minutes earlier than she
does now really really really seems impossible. We need a solid two hours to
successfully complete our morning routine (sinus issues, bathroom time, vests,
g-tube work, inhalers, nebs, antibiotics, pills, scripture study, breakfast,
pack up) so that pushes us all up to waking up at 5 and getting started.
I have been aware of the school day
morning miracle happening each day this year again since school started. All
summer long we drag through treatments and breakfast each morning and I think
"how in the world do we ever get this all done and packing lunches by our
8:00 departure time on school days?" We really have angels helping us each
morning. Perhaps they hold down the hands of the clock just a few seconds each
minute so somehow it works. Even more miraculous are the school day mornings
when I see each Saturday and Sunday all year round being the ultimate struggle
to get through treatments.
She received one of the biggest
surprises of her life when she tried out for the school play. She tried out for
a supporting character and landed a lead instead. That boost of confidence gave
her the courage to run for student council and although she didn’t win she
chose to still be a class representative. Then at church she joined a group of
other musicians with her viola and they have been practicing for a “I Am A
Child of God,” primary program.
With this
grown up schedule added on to the regular family seasonal schedule of soccer,
fall parties, and her activity days for girls meetings it’s been exhausting for
her. She loves all of it and doesn’t want to miss anything. She is trying very
hard to keep up with it all. Then as predictable as every start of school year
she begins to loose the desire to eat to make more time for friends and activities.
Not taking the time to eat begins to snowball the health of anyone but particularly
someone whose body already demands extra calories and oxygen.
At clinic
a week and a half ago it all showed up clear as day on the vitals and pulmonary
function tests. Her tank is running on empty. Her PFT’s were down 15 points
below what they were BEFORE she was hospitalized over the summer. Her weight
gain has slowed down enough to crash her off of her trend line. What was most
disheartening and discouraging was how she took the news at the clinic. Resigned.
Passive. Acquiescent.
So I come
home and as I tell my husband everything I saw and heard at clinic which
usually takes a few days for me to remember all the details we slowly together
come up with our parent plan. We have to spark the fight of compliance and
extra compliance and assertive compliance to her treatments. We keep asking
what more can we do to help and what more can we do to encourage her in this
life altering skill of compliance to her detailed and arduous never ending
medical regimen. She has the pain, discomfort, and burden of the disease and we
do what we can to help her figure out what works for her to relieve that as
much as possible. I don’t like to ever use the H word but I HATE when she’s suffering
digestive wise of sinus wise or airway clearance wise and I have no more tools
to hand her.
Things
are slowly dropping off of her busy schedule and by the end of this week things
will have gone back to our baseline of family business but then she’s left to
dig herself out of the health hole she has gotten into by participating in
these amazing social and mentally growth promoting activities.
The
pulmonologist was so kind and understanding at clinic with Maelee’s drop in
statistics. She was encouraging, overlooked the angsty elleventeen jazz and
said come back again soon so we can check all your numbers.
We know
she is full of strength. We watch her use it everyday. Now we need to be the
best compliance coaches we can be as parents because it is not only her that is
benefitting but all her siblings watching and coming up behind her. The clinic
in November will bring more news to see what is next for Maelee in the last few
weeks of 2018. And by that I mean another possible hospitalization or the best
side of the coin soaring numbers of plenty and sleeping in her own bed.
Kamarah’s
weight loss update.
The stress of the last four years showed itself in the
choices I made with food. Last time I wrote about it I was at 38 pounds lost. I
am so grateful to say that right now I am holding steady at 67 pounds lost. I
was selfishly hoping to get to a full 70 pounds before I blogged about it again
but I’m very thankful for the success of 67 and need to remember that. I have
lost more than I ever thought I could. I met two of the three goals I had and
have accepted that the third goal will remain as a war wound of motherhood.
The three
goals being. One: fit into my awesome red pants. I fit into them and now they
are much to big for me so I am on the hunt for just as rad of a pair or red pants.
Two: my wedding ring fits on my finger again, and also loose at that. The third
goal which is actually a great way to keep me humble and kind will not as it
seems ever be fixed by weight loss. I have a long spray of bulging spider veins
on my left leg that wrap around the back all the way to the front and down my
leg. I thought loosing weight would diminish those but it turns out you can’t
un-stretch blood vessels and that’s OK because I’m full of joy everyday by the
babies I carried that brought those veins.
My weight
loss strategy has remained the same. 1,000 – 1,200 calories (tracked by me on
My Fitness Pal App by UnderArmor the free one not the premium version), and to
get 10,000 steps and day and or 30 “active minutes.” I would say 98% of my
active minutes have come from walking either in place while I watch or listen
to something or by walking in my neighborhood. I do not have a trainer, a gym membership,
use pills, surgery, or anything else besides those things. My favorite way to
think about my calories is waking up everyday with $1,000 to spend. I have
become really good at finding the things I like and feel the best spending that
$1,000 on everyday, and do still sometimes fall for traps of delicious sugar
cookies, donuts and pizza. But I own up to those traps and pay out the money
and don’t overspend.
My
personal goal is to make it to my year mark of when I started loosing weight
which was January 29th. At that point I will evaluate my weight and
see what I need to do to maintain that weight. I sit comfortably smack dab in
the middle of the healthy BMI range for my height of 5’10. Look up my weight I
dare you.
