Tuesday is the big day

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!"

 

Many of you have asked how you can help us.  We really need lots of prayer. Here are some specifics.

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.