It has been an extremely busy month for us
with Emma’s 6-month check-ups with every specialist on her team, so I will give you a brief update on
all of her appointments.
Scoliosis: Emma saw her orthopedic doctor
today and her scoliosis had improved once again! Her doctor was very pleased with Emma’s progress and told us
to go home and worry about more pertinent aspects of Emma’s healthcare because
Emma’s back is stable and is not impacting her pulmonary or cardiac status at
this time. The ortho doc also looked
at Emma’s hips to make sure everything was forming properly. Emma’s hips looked great as well.
Pulmonologist/Allergy Testing:
Allergy testing is something Scott and I as well as her pulmonologist have been
wanting to do for quite some time; however, we needed to wait until her heart
cath/eye surgery was finished before we could proceed. During the allergy testing, Emma
received 72 pokes on her back with various allergens. We were all expecting some major allergic reactions to certain
outdoor allergens (ragweed, etc.) since Emma has had major asthma issues after
being in Oklahoma. However, that
would be way too easy. Emma only
had one allergic reaction: Lamb’s Quarters. Have you heard of Lamb’s Quarters? So, I ignorantly said “well, that’s interesting because we
don’t eat lamb.” After laughing,
the doctor informed me that is was a weed. Of course, we were baffled yet excited about this news. We headed to Oklahoma that weekend for
the first time as a family since being in pre-cath isolation. As soon as we crossed back over into
Texas (slight exaggeration), Emma started sneezing and having a runny
nose. Within two days, it
exacerbated to a full-blown asthma flare.
This resulted in meds,
several days of multiple breathing treatments and a few sleepless nights. We are still unclear on what is
triggering these asthma flares which is super frustrating, but we are pushing
forward and trying to still let Emma live and experience life.
Ophthalmologist: We had a
follow-up with her optho and he was very pleased with how her eyes healed. Her right eye is still the weaker eye,
so we are patching the left eye for an hour each day to try to encourage her
right eye to work more efficiently.
Cardio: This is the update that I am
unsure how exactly to write. You
see, Scott and I are at an impasse with Emma’s cardiac care. Dallas has taken phenomenal care of our
sweet baby since before she was born.
We have known all along that there might be a time in her life that we
had to pursue other opinions in order for us to make the best decision possible
for Emma. Well, we have reached
that point. Please know that we
there are no hard feelings toward Dallas and they are still Emma’s primary care
team. Her team is being very
supportive and caring in this new journey. We have requested opinions from Boston Children’s and
CHOP. We will hopefully hear
something back from the cardiac specialists from these centers in October. Once we have that information, we will
discuss it with our Dallas team and pray for guidance as we make a HUGE
decision on the next surgical step for Emma.
Feeding Therapy: While we
are waiting on the next step, we have decided that it is time to push Emma in
her feeding therapy. We have had
such caring therapists that have worked with Emma for a few years and have
aided in her making tremendous progress in all developmental areas. One area that she continues to struggle
in is with liquids. Emma has no
desire to drink, so we have enrolled her in an extensive feeding program
through Baylor called: Our Children’s House. Emma will be enrolled in the day patient program. Emma will attend this program four days
a week for five weeks beginning at the end of October (insurance
clearance/waiting list). Here is a
brief description from their website:
On the road to better eating habits, some children require more
intense, frequent therapies. In our Day Patient program, your child
sleeps at home with you, but is in treatment with us from 9 a.m. to 3:30 p.m.
weekdays.
•
Sensory integration therapy for texture, taste and sensory
problems
•
Oral motor skill therapy for swallowing and/or chewing problems
•
Psychological consultation
•
Four to five structured feeding, occupational therapy, speech
therapy and psychological consultations each day
We are being cautiously optimistic about this new endeavor. We are praying that Emma is receptive
to this intense therapy and that she is able to make progress with her
drinking.
Neurologist:
Her neuro appointment was short and sweet. Emma’s neuro was happy with her
progress and said we will just continue to monitor her.
Well, that about wraps up her medical updates. There is fun stuff to catch you up on,
but that will have to wait for another night.
As always, God is good! All the time!
God is good!
Sarah
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| Wheelchair Fun at Gramma and Grampa's |
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| Busy with Cousin Coen |
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| Uncle Caleb is so Funny! |
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| Hay bale fun! |
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| Standing like a big girl at the window looking for flying pigs :) |
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| My beautiful heart warrior |
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| She looks like such a big girl in this picture |
