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.
Thursday, January 29, 2015
Wednesday, January 28, 2015
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.
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
Tuesday, January 27, 2015
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.
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.
Monday, January 26, 2015
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. :)
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 |
Wednesday, January 21, 2015
Insurance approval!
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!
Sunday, January 18, 2015
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.
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.
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. |
Tuesday, January 6, 2015
Happy 2015
Miss Grace and Gator waited up to see the ball drop. She said she was waiting up for 827 who was on duty. All I know is that Mama was tired and Cowpoke was in bed by 9pm. She saw the ball drop and got her kiss from Mama. And she still waited up until almost 1:30am when her Daddy came home!
Not one single bit tired
|
It is back to school for the kids tomorrow and I will have the care conference about our inpatient stay. Praying for solid direction and strength for all of us to push through this time apart.
Gator is home and December in pictures
We were all overjoyed with Mr. Jason (Gator's trainer) called and said Gator was ready to come home! It was a long three weeks and Grace missed him terribly. She cried every. single. day. Gator missed her too. We licked his legs and gave himself some hotspots/bald spots in several places. We are all glad to have him home!
December FLEW by so here is a recap of our month in pictures . . . .
Enjoying the Advent Devotional from our church |
We went to Studio Movie Grill to see ANNIE! (It was fabulous and we all loved it!) |
Family Christmas Eve Eve Celebration |
Starting the day with a warm bubble bath and a Santa beard |
Texas Christkindl Market at the Ball Park at Arlington - Teaching my babies about the Christmases I had in Germany as a child |
Texas Christkindl Market at the Ball Park at Arlington - Teaching my babies about the Christmases I had in Germany as a child |
Annual Christmas Celebration Breakfast with our friends! |
Santa came and brought that FROZEN castle! |
It was the first year Grace enjoyed opening gifts! |
Gator and his Christmas bow |
It was a FROZEN kind of Christmas |
Trying to do a scheduled feed during the middle of family Christmas can ne a challenge |
Christmas Light Parade in Ennis, Texas |
"Santa! I see you!" Christmas Light Parade in Ennis, Texas |
Christmas Light Parade in Ennis, Texas |
Christmas Light Parade in Ennis, Texas |
We have a live Christmas Tree tradition. |
Sunday, December 21, 2014 Cowpoke's baptism We were so excited and proud of our boy and his decision to follow Jesus! |
Crazy Christmas Light House in University Park Her muscles were cramping in the car that is why she is braceless and shoeless. |
Crazy Christmas Light House in University Park |
Playing the piano with Yank-Po |
Directing 827 as he put the Christmas lights on the house |
Gingerbread family with Yank-Po and Grammy |
Carefully choosing decorations (No gingerbread or candy were consumed in the making of these men. In fact that night the gingerbread family "ran away" never to be seen again!) |
4th Generation to love this nativity |
Grace thought her Jesus doll was a better fit for the nativity |
Mailing her letter to Santa and not in the mood for pictures |
She made a safe and edible Olaf |
Matching shoes |
Christmas party at school |
Reindeer camp! |
PT with Gator Dog |
SANTA! 2014 Texas Motor Speedway |
Snow fun provided by the local First Baptist Church |
Snow fun provided by the local First Baptist Church |
Christmas tree at therapy |
Variety, the Children's Charity of Texas Christmas Celebration! |
Variety, the Children's Charity of Texas Christmas Celebration! Wishing you and yours a very Merry Christmas! Love, Grace & Gator, 827, Cowpoke and Mama |
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