Tuesday is the big day.
I am nervous. And let’s be
honest, I wish there was some other way to do this without going back to the
hospital.
 |
| Friday she got to attend the "Right Choice" rally for good behavior at school first semester. Then I had to withdraw her from school to enroll her in DISD while we are in the hospital. She is going to miss her teachers, her friends and her favorite "Mrs. Cheryl" |
I have gotten a lot of questions about why we are having to
go it. Here is the short version. Grace suffers from Eosinophilic
Esophagitis, an inflammation of the esophagus resulting in extremely limited
food intake options. Miss Grace is dependent on enteral formula called Elecare
Jr. This formula is nutritionally
complete, but it is very expensive costing
approximately $1,200 per month. Miss Grace loves her formula and has been on
this particular brand since she was eight months old. Thankfully she is growing taller and we need
to increase her caloric intake. It is
really hard to get her to drink 48-52 ounces orally each day. Most EoE children at this point get a feeding
tube placed and supplement their calories with night feeds through their
feeding tube. Well anyone that knows
Miss Grace knows that she has some sensory challenges and she hates anything
sticky or tacky. In physical therapy
they tried to use kinesio tape on her feet and legs. It was supposed to stay on 5-7 days (through
bath) before it came off. Miss Grace had
it ripped off before we were out of the parking lot. Band-aids are the same way. Because of this her entire care team is in
agreement that a feeding tube would be a huge sensory challenge for her and she
would be trying to pull it out. She isn’t
at an age where we can reason with her about this yet. So the goal of inpatient is to increase her
volume of safe table foods. The foods
that she can eat are organic, free range chicken, fresh fruits and vegetables
and rice. Not very high calorie
foods. We need her to increase that
volume so she needs less medical formula.
 |
| We took Gator to the vet this week to get a certificate of health for the hospital. He was perfect of course. Miss Grace saw a Christmas card from our friend Stephanie & her dog on the board at the vet. She got all excited and said, "Hey! Those are our friends!" |
1) Pray
for insurance approval. We have
fantastic insurance, but Miss Grace is a “high user” (we are the ones you don’t
want on your employers plan). We are
still waiting for approval for Tuesday admission. Please pray it goes through on time.
2) Pray
for Cowpoke. My Mama heart hurts when I
have to leave him. He has a schedule in
place and we are thankful to everyone who has stepped up to help with him. It is compounded by 827 working 3-11pm each
day. He will really only see a parent/Daddy
before school. He is just 7 and that is
a lot, especially since there are a lot of unknowns on amount of time.
3) Pray
for Grace to eat. Pray her body will
allow her to increase her volume. Pray
for her strength. Before her I never
realized the struggle with food. This disease
is debilitating and exhausting.
4) Pray
for Gator. This will be his first bring
hospital stay. Pray that he will stay
focused on his girl. He loves kids and
kids love him. He needs to stay
focused. He is also used to getting some
good exercise each day and not being stuck in a hospital room.
5) Pray
for me & 827. God is opening a lot
of doors for open our family. I am trying not to stress about timing but those
of you who know how type a I am know this is a challenge.
6) Pray
for our treatment time. The team says
they think we will need 4-6 weeks. Miss
Grace will turn 5 on Feb 20 and Cowpoke will be 8 on Feb 26. I really want to
be home for birthdays. I want to be able to plan parties and celebrate my
babies. Will you pray for that?
 |
| Gator got a bath today after church so he is squeaky clean for the hospital. Doesn't he look thrilled? |
Several of you asked about having visitors. Visitors are welcome. You can text me. Grace will be pulled out for
therapy in 30 min increments 7 times a day, but you are welcome to come! Just
text my phone or e-mail me for address and access codes.
Thank you for your love and support!
 |
| I am so thankful that they have each other. |
