It’s time to consult the specialist again.. Something isn’t
right – our nurse, AK and I are all becoming genuinely worried. About two weeks
ago, Annabelle began showing signs of a cold/cough. It’s onset was fast but we
prayed it would be short-lived. It’s clear your feisty two-year old isn’t
feeling well when you take her to a water-slide, pool party and she refuses to
get out of your lap the entire time. She never got in the water.. we did
however, manage to pull a few smiles from her with the help of bubbles
(guaranteed trick, never fails). She was slowing down though.. she wouldn’t eat
much and began to need pump feeds constantly.
After a few days it began to get worse and to the point our
nurse no longer felt comfortable even taking her much out of the house. She now
barely has energy to play outside in the afternoons – her mornings are the only
time of day that she has much energy, and even then, she depletes quickly. Her
coughing has become a high-pitch chocking / wheezing / gasping. The nights are
worse, but not substantially that I would relate it to anything like croup. Her
eating habits haven’t gotten significantly worse, but they’re still not where
they need to be. She’s undoubtedly lost weight. The high-pitch cough is what
scares me the most. Coughing and retching (gagging) is what terrifies me. When
she begins to vomit / needs to empty her stomach via tube, that is when we
begin playing with fire. When we have to drain her stomachs contents, she loses
her counted nutrients that she needs to stay balanced to ensure her ammonia
levels don’t spike and begin causing worlds of problems. That’s where we are
now.
We still haven’t managed to get the last EoE relapse under
control, even with diet eliminations and protection while playing outside. Annabelle
wears a mask most all the time while she is outside. She cannot dare go out if
anyone is/has recently mowed the grass. We don’t even cook foods that could set
off her EoE inside our home anymore. Our entire family has lost meal items in
hopes we can bring Annabelle’s EoE under control by eating and being around
only the safest foods possible for her. It isn’t working. We’ve ramped up the
medication without luck and are back to putting her in a bubble 99% of the days.
Again, no luck.
Yardsale & Lemonade Stand this weekend to raise money for Annabelle 8)
Rock on beautiful girls! You're doing bigger things that you could ever imagine!
So we hold our breath and pray.. .. .. .. and drink wine; because fruit is good for you ;)
This last spell of whatever has set her frail immune system
into attack is truly doing her in. I have no idea how to stop it and so I’ve
called and am hopeful to hear from our specialist soon. We do have an
appointment on the books for next week to do more labwork and follow-up with
some concerns, but I don’t think we can wait that long. I have no idea what to
expect when I hear from the doctor today – my wish for Annabelle is for the
least amount of pain as possible, but fast relief from this horrid, horrid
disease that’s attacking her little body. I don’t know what other treatment options
are even out there for kids like Belle. We get lost in this huge world of
thousands of doctors, millions of medications and hundreds of tests… but no
effective treatment options. Eosinophilic Esophaghitis is not a one size fits
all treatment type of disease… Annabelle’s case involves mystery components
that make diagnosis, treatment and management nearly impossible. I just pray,
with everything that I have, that one day soon we will have the answers we need
for our baby girl. Annabelle deserves a break in this fight, and deserves to
know what its like to live and love life without pain. God hear our prayers for
this sweet little girl!
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