Making steady progress & then a big crash

Miss. Grace is making steady progress here at Food Camp.  She is working hard in her therapies and she is really pushing through a lot of things. We are so proud of her hard work!

On Thursday evening we had the best time since we came to Food Camp.  There was a scheduling error and the monthly family dinner was canceled. The parents were hungry (there is not cafeteria here in our building and you get one meal tray a day and cannot eat in front of your child until after 7pm) so we decided to order pizza and hang out in the playroom. The kids had a good time and the parents got to visit, laugh and relax. It was so therapeutic for me - I needed that connection and downtime. This process is incredible intense and rigid. I was thankful for new friends and laughter.

This older girl is Kaitlyn that I asked you to pray for. She got to see the pain management doctor and is feeling better with a medicine change, although her health is still fragile.  Please keep praying for her.

Sometimes Grace is just so worn out. This process is intense on all levels.  Thank goodness for Gator Dog loving. He has changed her world so much.

Friday started off sad, but turned in to a good day.  Our suitemates and dear friends graduated from the program. Gabby & Grace became very close and were both in Princess Wonderland most of the day. They played well together, went to school together and pushed each other in therapy.  Her Mama was just as precious and we look forward to growing our friendship outside of the walls of the hospital.  I was careful not to tell Grace that Gabby was going "home," but she heard  the nurse say that. For the first time in 11 days she asked when she could go home.

 



Friday afternoon we got a visit from our friend Amber and her precious baby boy!  We were laughing as we realized we have known each other almost 8 years now! What started out as a professional relationship has become a deep friendship. I am thankful for what she has meant to our family! We loved seeing them and Grace loved her new FROZEN dress and accessories.

Miss Amber has known Noah since he was a tiny baby boy!

Saturday we were looking forward to a beautiful weather day with time for outside play in between therapy sessions. 827, Cowpoke and Layni all came to visit! We were so excited for family time and going outside! We went to the outdoor playground and after about 15 minutes Grace had a big crash, tripping over her own feet. She hit her head pretty good and landed on her face. It was a bloody mess and she was hysterical.  She finally calmed down but did not want anyone touching her. She certainly was not going to do any more therapy for the day and she was not going to eat. She was able to rest, although she was not comfortable (and she was refusing meds offered). She was up and down until about 3 am. Needless to say we are both dragging this morning. Even Gator is tired!

Please keep praying! We need her to feel better so she will eat and do her therapies so our stay here is not extended! Thank you so much! I cannot imagine being here without my prayer warriors praying for us! ~ Mama

Cowpoke was drawing her picture and doing everything he could to cheer her up

She finally calmed down and slept while 827 held her.

It's 2:30 am and her face hurts and she is swollen up pretty good. Poor kiddo cant catch a break.

 

Emotionally tired

I am sorry that I have been terrible at keeping the blog and facebook page updated. I have been processing a lot emotionally and just did not have it in me to blog.  The past few days have been hard. On Monday, our little friend Raeleigh received the news that the tumor on her spine that left her without feeling from her waist down is rare and aggressive. The prognosis is only 25%. One minute the girls were having a tea party in the playroom and within 30 minutes the ambulance was here wisking her back to Children's to have a port placed so they could start aggressive chemotherapy immediately.  She is two years old and won't turn 3 until March. Please pray for the Vasquez and Hogue families.

Yesterday, we learned our 13 year old friend named Kaitlyn is not seeing the shrinking they hoped in her brain tumor. She also continues to develop issues from her brain tumor and medication side effects that continue to stump doctors. She is a precious girl who is a "big sister" to the little kids on our wing.  Being a 13 year old is so hard, much less having an aggressive brain tumor. She has lost all feeling on her right side and is not having some nyropothy issues that cannot be explained. Pray for her and her mom.

That being said it has been a frustrating week for me. I feel badly being frustrated and overwhelmed because I know there are kids like Raeleigh and Kaitlyn that are dealing with so much worse. We had our first inpatient care team conference yesterday. She is making steady progress and working hard in therapy. She has made some great gains in physical therapy.  Our tentative discharge date is February 25. That is three weeks from today. I admit I was disappointed as I wanted to be out sooner, but I am trying to focus on all her gains. It means a birthday in the hospital, but child life is planning a FROZEN ball. If you would like to come let me know and we can mail you an invitation. The team does feel that given Grace's diagnosis's that she will probably always require some sort of feeding therapy. That was disappointing. We are not going to take away all her medical formula from her diet as we had previously discussed. She needs the calories and depending on disease progression we can up the volume as necessary.

Here are some pictures from the last few days . . .

ou

Playing outside on Monday morning between therapies. It was chilly!

She wanted a bell on her bike like the ones in child life. Daddy made it happen.

She loves getting mail!

Doing a princess puzzle from our friend Heather and her family

She made this sign for our door

Isabella came to visit! We went to child life and painted.

I am so glad we brought the easel. She is in the room making a card for her friend Marcus who has pneumonia.

Our daily trip to the chapel to "make a joyful noise"

Sensory Science Lab! Making goo with our suitemate, Gabby

Goo! I was so proud of her for touching and playing!

Thanks for praying, my friends. We do covet your prayers!

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.