Day 5 and Day 6

My phone had a complete malfunction and died on Tuesday night. It was awful and bring stuck in the hospital and without my phone it was not fun. I may or may not have told 827 I felt like I was imprisoned. LOL. With Best Buy I was going to have to send it off and be without a phone for 7-10 days. Thankfully 827 spent his Saturday evening at the Apple Store. They replaced my phone for free (thank the Lord!) and I am back in business.

Miss Grace had a busy Saturday. She just had 5 therapy sessions as opposed to the weekday schedule of 8 therapy sessions and 30 minutes of hospital school with DISD. We played a lot and the playroom was busy, busy, busy! I was ready to get settled for bed by 6:30. Thankfully Grace doesn't tell time. We were able to get on our jammies and settle in for a movie night in room. She picked Princess Diaries, which was a favorite with her big sisters, so that brought back a lot of memories for me.

This morning we were up at 6 am for vitals, meds and the doctor doing her rounds. She was early as she wanted to go to church, which I could appreciate, but man, 6 am on Sunday?! Miss Grace was anything but cooperative and I was ready for a Mama time out when she went to her first therapy at 7:30. When she came back we got her ready for today and did her stretches. We listened to our favorite song, You Make Me Brave by Amanda Cook. It helped us to refocus.

We tried to log in to watch our church online but hospital wifi blocked it. We were so sad. We decided to head to the Protastant service in the chapel. It was lead by a nice chaplain who is assigned to the children's hospital. It was a liturgical service and after about 15 minutes Grace said, "I miss my happy Avenue Church!" Needless to say we slipped out the back.

Thankfully Daddy arrived at lunch time and he was able to "convince" her to take her medicine and to cooperate. We had more therapy and did some painting in Child Life. Cowpoke, Grammy and Yank-Po arrived about 3:30 and  we had a good visit with them.

We ended our day with more therapy and a hot bath to relax her muscles. She has been working them hard and they are cramping a lot. She had no interest in the Super Bowl and was quite mad at me when I was telling her that the lady singing the National Anthem was the lady who sand Let It Go. She wanted her to look like Elsa.

Speaking of, we are about to pop FROZEN in the laptop and have a quiet evening after meds at 7 pm. Thanks for praying my friends.

Day 4

Well hopefully things will get better after today. We moved rooms so those who wanted to send mail the new room is 121. It was one of those days where I was thankful to be wearing my Be The Church shirt. Every time I would look down and see the bright yellow logo I would be reminded that we are to be Christ's witnesses and show love to others even when it feels inconvenient, ridiculous and undeserved. Keep praying for us friends!

My phone is also dead and won't turn on. It says to plug in to iTunes and is locked. I youtubed some reset videos and now it won't turn on at all. Go figure. Message me on facebook or call 827 if you need me and pray for Best Buy to be able to fix it in the morning.

We end today with good news for my sister and good news for 827. These moments remind me of the bigger picture and God's greater plan.

Food Camp Day 3

Phew! 3 days DONE!

Today was an okay day.  We had some issues that needed resolving and thank goodness for Daddy who is not afraid to say no.  Mama tends to be emotional and compliant.  I will be honest - the last 36 hours have not been pleasant and I was ready to pack up and come home. But then I remember our goals for Miss Grace and I see how amazing she is doing in feeding with her awesome therapist, Mrs. Kayla and her feeding tech, Miss. Lauren.

On a praise note, Miss Grace ate 23 grams of banana today! She is not a banana fan but the natural potassium does wonders in helping her legs not to cramp. Last fall we spent 5 30 minute outpatient session on banana and were unsuccessful. Today she did it! She does not want a tube and she knows that we mean business about eating. We are so proud of her!

Today she started DISD hospital school. Her teacher is Mrs. Dixon and she was super sweet. School only lasts 30 minutes.  Grace got to do the calendar and weather and work flashcards and do some writing. She had fun so I was glad that was a positive spot among a busy day of therapy.

This afternoon we spent some time outside on the playground. It was a beautiful 80 degrees and that hour that we boycotted "quiet rest" and played outside was good for all of us!

We finished her Valentine's for her PPCD and Pre-K friends at home today too.

 

 

 

She also was blessed to receive a package from the Bee Brave Foundation today! It was her own personalized busy tray art desk! We have no idea who recommended her for this special blessing but to whoever you are THANK YOU! It was a huge hit!

 

 

Thank you friends, for continuing to pray for us.  Your prayers are felt and are coveted. We are all determined to make excellent progress and control this disease and get the calories she needs. We love you all!

 

Until tomorrow,

 

 

Mama



Food Camp Day 2

After a short night we were up at 6 AM for vitals and meds. It seemed eons earlier than the 6:30 AM we do at home. Miss Grace had therapy starting at 7:30 for breakfast feeds and then going to an hour of OT, an hour of PT and then a 30 minute break before her lunch feed. She had a busy afternoon getting speech feeding and 2 more feeding sessions. She did really good today and was exhausted tonight. We went to "science night" although the experiments didn't work as planned. That is science, right? Tonight we hit the tub first.  She got her massage and stretches and meds and was sound asleep by 7:30 PM.  We are all tired and I don't know why I am dreading this so much more than last time. Last time we were in with an amazing group of kiddos and parents. This time there is not a bond like that, but it is only day 2. 

I took this picture below before we went to science night. It was one of those days where we are all tired and it is just Tuesday. Thank you for praying friends.

Food Camp Day 1

This morning, after many tears, we said goodbye to Cowpoke and headed to Dallas.  We arrived and survived admission.  It has been a busy day of meetings and lots and lots of paperwork.  Gator has been very nervous about all the people.  We arrived in time for the weekly cooking class with Chef Zoe, but we skipped that to unpack in our room.  We kicked off with feeds at 1:30pm.

Miss Grace is very tired and Mama is too. Here are a few pictures from our decorated room. Therapy starts at 7:30 AM tomorrow and goes until 4:30 PM.  We enrolled in DISD so hopefully we can start school on Wednesday.

PS. We just got to talk to Cowpoke. He had a good day and Nana fixed him some homemade veggie soup. :)

Resting. We had a panic attack and it drained us.
Thank goodness for Gator dog.

She put out her "crystal angel" from her teacher, Ms. Dively

Of course we brought the easel!

Thank goodness we have a lot of cabinets for storage in this room!

FROZEN poster from Grammy and Yank-Po and movie slides from sweet Samantha

 

Insurance approval!

Being out of school and waiting for the hospital to call means free time for us!
We took a fieldtrip to Waco to visit the Baylor Bears, Joy & Lady. As you can see they were sound asleep not giving us the time of day. Gator was not to interested in them either. Miss Grace sure was!

We have insurance approval! But 827 and I decided we are going to wait and come in on Monday since we have an appointment on Friday with her EoE doctor at another hospital. They were going to let us leave and go but that is a lot of change for my sensory child with only being in the hospital for 24 hours at that point. It also means a birthday in the hospital, but I don't know what else we can do. We all just want this over with. Keep praying friends.

 

 

We also want to send a huge thank you to Karen Mayer who provided this beautiful Mori Lee gown for Miss Grace to wear in the pageant in March! She is very excited! 

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.