Dear Prayer Warriors,
Happy New Year I wanted to give you a roundup of all things
Anna from 2019.
Medical visits:
This year we had one surgery (the Jejunostomy, paired with
pulling her two front teeth). This was to minimize her exposure to radiation
and to keep food out of the stomach where reflux was so common. The surgery and
the benefits were both a great success praise God. Anna had one other week long
inpatient hospitalization for a kidney infection and UTI.
The pulmonologist removed two of her three lung medications
and Anna has been doing great. She still wears her BiPAP mask at night to help
open her lungs and prevent her propensity of atelectasis (collapsed lung). Anna
continues to keep her airway and lungs clear with all her excess saliva.
Our new GI doctor encouraged us to start a supplemental blended
diet on top of the formula for greater weight gain. Two years ago, we fed Anna full
time with a blended diet. It was such a mess literally, it was expensive, and
Anna ended refluxing most of it up and out. Now that we are feeding into the intestine,
we gave it another shot. We got a different feeding pump for grainier mixes, dusted
off the Vitamix and our Gerber baby jar collection. Since we started, we have
seen more weight gain, better skin complexion and energy. Anna is just over 40 pounds. Its getting the
nutritionist to sign off on the recipes that has been a challenge.
The Physiatrist was pleased to see that Anna’s hip dysphasia (malformation
leading to dislocation) hasn’t progressed. She still has asked us to meet with
an orthopedic surgeon about this. The Doc gave us a prescription for a new stander,
gait trainer, and a platform lift. Anna’s muscle relaxer was also increased. In
an attempt to improve Anna’s hip joint, the doctor injected Anna’s inner hamstrings
with botox. This is a three-month paralyzer that should prevent Anna from
utilizing her typical extension pattern that causes malformation in her joints
and bones.
The Ophthalmologist only saw Anna once this year. Her eyes
seem less active and less interested in following sound. Her vision does not
seem to be increasing, but only Anna really knows. We got new glasses with
shorter stems and that has helped immensely to keep them on her face.
Praise God for no needed appointments with neurology and
neurosurgery. Although we did meet with neurosurgery down here to establish
care. Anna continues to show no signs of seizures or shunt malfunctions!
We also met with a behavioral doctor that diagnosed her cognitive
ability to give her an official developmental delay diagnosis as it was a
requirement for Medicaid.
We got preapproval for genetic testing that the geneticist encouraged
us to have because of Anna’s Polymicrogyria (where the folds or ridge-like shaping
of the brain develops too many folds, and the folds are unusually small). We have
yet to take steps to complete it. It seems like it means more to the doctors
than it does to us to know the origin of this malformation. Another pending treatment is the stem cells
that we harvested and banked from Renee’s umbilical cord. We have yet to find
out if they are compatible and could be administered to Anna.
Therapies:
We had a Physical Therapist that loved working with Anna and
pushed her productively with great encouragement. Then we moved, we are on our
second PT in Colorado Springs and they are just not connecting with Anna or
interested in pushing like we have seen. We are weighing our options to do another
intensive therapy run, or switch companies again. Thankfully our PT wrote a
letter of recommendation for all the home modifications she recommended: a
wider driveway, paved access to the back yard, a platform lift, widen the bathroom
doorway, bigger bath tub. Perhaps the insurances will find these as necessities
too.
We like Anna’s Occupational Therapist down here in the
Springs however she was diagnosed with cancer and is moving back to California.
We are looking for another OT.
Speech is the only one going smoothly down here. Anna is
tasting foods and enjoys interacting with all the lip and mouth exercises.
We had to discontinue Hippotherapy (horseback therapy)
because its billed differently in this county. Anna loved this so hopefully we
can find a place that can make it possible. Anna receives massage therapy which
continues to help her with bowel movements. We noticed that Anna doesn’t engage
like she used to with music therapy so we are going to discontinue it for a
while.
Nursing:
Praise God that Lindsey and I continue to be Anna’s Certified
Nurse Assistant CNA. This enables Lindsey to stay home with all our kids. I
supplement a few times when Lindsey is out with friends. Lindsey is excellent
with Anna. Bathing Anna has become rather difficult, we have a smaller bath and
a small bath chair for a growing girl. Lord willing, we will get a better tub
and chair in the coming years. Tonight, is the last night for Anna’s main night
nurse. She worked 4 nights a week for us and we currently don’t have anyone to
replace her yet. We are their “top priority”. We are thankful for our other
night nurse that continues to work the weekends. Since Anna is nonverbal it is
really helpful to have skilled nurses that help assess when Anna is fussy and
not feeling well. We will miss the extra love and care our main nurse gave Anna
during her time with us.
Loose ends:
-Stemming from the last hospitalization we have found ways to
keep Anna having regular bowel movements avoiding backups, frequent suppositories
and further complications.
-The ramp van continues to be a tremendous aid we have had it
for close to a year and a half now, praise God.
-The home is a tremendous comfort to live in, we didn’t know just
how helpful more space would be.
-We have house cleaning which is a great help when they show,
the person cancels often.
-We still have two insurances that continues to pay for 99% of
Anna’s medical expenses.
-We were surprised to receive a $2400 check from Jefferson
county to spend on Anna as we left. we were able to buy adapted toys for her to
interact with and a backpacker’s backpack to carry her in on hikes. We still
have a good amount of it saved for home modification although we were thinking
about spending it on a week-long respite retreat that Joni and Friends do for
special needs families where God is glorified and sought, and I get one on one
time with Lindsey.
-Pray that we would find babysitters willing to know Anna and
love our kids. I just want to treat my bride the best I can and I know that quality
time has no substitute.
I love that Anna employs people, she brings financial well-being
to multiple households and blesses the people that help her with money. That is
a grace from God! I pray no one who serves Anna takes advantage of her,
thinking she is just a means to get paid. There are two people who are full
time paid and half a dozen part time, on top of all the doctors and specialists.
Please join us to pray for these many things mentioned as you feel impressed
upon by the Holy Spirit. Bring full healing Lord Jesus to Anna.
God has equipped us to meet Anna’s needs and He will continue
to do so, blessed be the Name of the Lord.
Love,
Nic, Lindsey, Anna, Simon, and Renee
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