2014 has been quite a year around
here, with the last 5 months so overwhelming at times that I almost forget what
even happened in the previous months. This year I have had to truly walk BY
faith, which is much easier, said than done.
It has been a huge year of growth, particularly for me, as I have learned so much about myself through each situation and circumstance that arose. I do not consider myself to be a fearful person, but wow, have I found some places of tremendous fear and vulnerability that I did not know existed. I am thankful for all of it, but the times of feeling so raw are not my favorite:).
This year I said goodbye to my
full-time position at the school as I finally conceded that I was drowning and
unable to successfully manage all that comes with being a full time
administrator, wife, mother, and caretaker of all that comes with Natalie’s
medical condition and related issues. In making the decision to step down from
my role at the school, Mike and I had to take a huge leap of faith, trusting it
would all work out financially and so far it has. Mike and I are thankful for
those in our lives who have helped ensure our kids can stay at their private
school they have attended since preschool, which was one of our big concerns.
Emotionally, letting go was hard as well. I am a doer, a visionary, a person
who likes to go full bore into all I do, and it was difficult to step away from
something that I loved doing. That said,
taking that leap of faith was clearly the right thing to do. If I ever doubted
that we were making the right choice (and I didJ), God has shown me a million times
over that it was both right and necessary. I am thankful for that confirmation
which gives me peace about our decision. I cannot imagine how we would have
gotten through this fall had I been working full time.
We also had to “say goodbye” to the
hopes that we were wrong about Natalie’s condition and the thought that maybe
she would outgrow it or it would not be progressive. Natalie had her muscle
biopsy, which confirmed her long suspected mitochondrial disease diagnosis and
with that came such a mix of emotions and of course, more questions. Talks with
doctors confirm that this is for life, and we will take things as they come. We
have continued our process of saying goodbye to what we consider “normal”
around here, as we are constantly greeting a “new normal” as things change and
evolve with Natalie over time.
One of the most painful “goodbyes”
I had this year involved my amazing son Kyle. As I said “hello” to the reality
that he was really struggling internally, I had to abandon my hope that we were
doing enough to ensure his needs, particularly those emotional ones, were being
met amidst all of the chaos and constant goings on with his sister. Both his
dad and I have worked so very hard to try and balance things, but with the
hospital stays, constant appointments, day to day challenges, and changes in
plans, and just overall demands that have come with Natalie since she was
young, the fact is, it is really impossible not to feel like “the other child”,
the one tossed aside. He is so patient, so amiable, and so very
quiet/introverted, you can miss where he’s at if you don't look very close. I
am thankful for some realizations that came this fall, and to have a much
better read how he sees, feels and experiences our lives. He truly is a gift, and
so far from being “the other child”. He is my Kyle, my first born, and my
heart.
The situation with Natalie has
continued to be a bit of a roller coaster with the last half of the year being
quite a ride. We thought we successfully dodged the hospital stay bullet when
we made it through July without an inpatient admission for the first time in
years, but really it was just pushed to August for 2014. It was, once again, for migraine issues, this
time one of her migraines that just will.not.go.away. She gets into these
cycles that last for weeks on end, and UCSF admits her for DHE treatment over
the course of about 5 days. Last year, the DHE held her headaches at bay (for
the most part) for about 6 months or so. This past fall, we got about a month
and a half reprieve before the headaches came back (and have not really left).
Since mid Oct, Nat has had about 4-5 headache free days. She also has developed
new symptoms including an intermittent right eye droop and lightheadedness
along with increased fatigue and shallow breathing issues.
Around the time I started raising
these concerns to the doctor, the results from Natalie’s CPAP study came in and
they were NOT GOOD. Earlier in the year, Natalie was diagnosed with mild to
moderate obstructive sleep apnea due to weakened muscles at the base of her
tongue. Because of this, it was recommended that she go on CPAP at night. The
hope was that, with better sleep, she would have much better days with less
issues and symptoms. It is not something you want for your kid – to have to be
attached to tubes to sleep – but if it works, then you do what you’ve got to
do. Mike accompanied her to the sleep study where she was fitted for it and
used it for one night. It was rough goings, but they made it through it. The expectation was that they would get the
information needed to set her up on a CPAP and we would be good to go. Instead,
the pulmonologist informed us that her results indicated there was severe
central sleep apnea with about 12 episodes in an hour, including several
lasting up to a minute where she stopped breathing. Mike and I were stunned and
honestly, freaking out. Central sleep
apnea occurs when the brain fails to tell the body to breathe and is indicative
of a much larger issue. We were told that she was not a candidate for CPAP, and
that while they were hoping BiPAP would work for her, they weren’t really sure.
That was scary as well because the alternatives are much worse.
Because of the new sleep study
results and her other symptoms of increasing concern, her doctor ordered a
brain MRI and tests to rule out additional significant secondary conditions.
The reality is they were looking for damage to the brain either from possible
stroke episodes or migraine damage, or some other hit to the brain to explain
this sudden change in her apnea and symptoms.
In mitochondrial disease, strokes
are something that can and do occur and we always have to be on guard for signs
of strokes with Natalie. Per her specialists, her migraines really are
“stroke-like” episodes, and we have been “taught” what to look for in the event
that an actual stroke is occurring instead of a migraine. It's always in the back of our minds. With
this knowledge and understanding, I was very scared of what we might uncover.
And, is often the case with Nat, we
still aren’t really sure on things. Brain MRIs don't come out to well when done
on someone with braces. Per the doctor, there may still be a brain issue, but what
could be seen for now looked good.
Her labs were normal for the other condition;
however, we were told that 15% of individuals with myasthenia gravis (the main
one they were concerned about) don't have positive lab work. The additional
test for it will require her to be put under, and we are waiting to see how
things go.
 |
| The type of mask Nat will have. |
While we originally were grieving
having to get her a machine to help her sleep at night, we were immensely
relieved that her body responded so well to the BiPAP when we went back for
that fitting and study. The doctors are hoping that her central sleep apnea was more of an extreme reaction to the CPAP versus a true central sleep apnea. Time will tell. I spent the last day of 2014 picking up the BiPAP and
going through training. Nat will spend the first night of 2015 initiating her
BiPAP. She is less than thrilled, and we are using doctor-approve bribery to
get through the first few weeks. Your prayers would be appreciated!
All of our hope is currently in
that BiPAP right now. If after using it, we don't see much improvement or her
symptoms continue to worsen, we will need to do some further investigation.
This will include removing her braces for a full, clean, and clear Brain MRI so
they can see everything, and possibly the more invasive test for the other
condition.
It also might just mean that we are
seeing progression of her mitochondrial disease, which we know is to come, and
that may just be the way it is – another “new normal”. In talking with her LA specialist last month,
he shared that while the migraine issue should improve (though not go away)
after puberty, the fatigue and other symptoms are not expected to, and will
continue to worsen. He did adjust her medication protocol so we are hoping to
see some improvement from that as well.
Either way, we’ve got this. We will
take it on one step at a time, walking by faith. One thing I hope we have
successfully instilled in our kids is that there is joy to be had always, and
your struggles and challenges are not what define you. We believe that and try
to live it out each day.
As I re-read this blog entry, an
abbreviated version of some of the events of the year, I realize it highlights
the trials. I am not a “glass half empty” kind of girl and assure you that
there was an endless list of things we enjoyed this year. Some of them were:
 |
| Natalie 's volleyball games during her first year on the middle school volleyball team. |
 |
| Kyle's swim meets in his first year on the HS swim team. |
 |
| Natalie's first time away at MDA Camp. She had an amazing time and has been counting the days until MDA Camp 2015! |
 |
| Kyle's football games. He started the year on JV, and was moved up to Varsity to play center. Go #77. |
 |
| Natalie's performances in both in the 4th/5th grade musical, playing the role of "Petey" (a parrot) and... |
 |
| in Willy Wonka as an "Oompa Loompa". |
 |
| Our fantastic yearly family trip to the beach. |
 |
| Our first family trip to Disneyland in the winter - so beautiful, such short lines! |
 |
| Hosting the 2nd Annual Mito Mad Hatter 5k with the help of some amazing friends! |
 |
| And...all of our goofy, fun, and special family times! |
And so our journey continues, as we continue to learn and walk by faith, say goodbye to
2014, and usher in the BiPAP
along with the New Year. Peace out 2014 – thank
you for EVERYTHING you brought
us.We are blessed and better for it. As
we move into
the New Year, my one word goal is "contentment". May we, and especially I, find it within all
circumstances.
