Oh what a long time it has been

It has been so long since I have updated the blog.  I am sorry.  I have been trying to update the Facebook page with pictures and brief updates.  This summer was full of change as we moved about 80 miles south of our old hometown.  Being in a new home, school, church and town has brought many changes we are working to embrace.  We have kept all Grace's specialists the same, but she does have a new PCP doctor.  She has been good to work with us and we are getting to know each other better.

Grace's vision has continued to decrease and we are working to get her the state services she needs at school to be academically successful.  Her GI diseases have been relatively stable the last six months and we are so very thankful for that.  We have a day surgery scheduled the Wednesday before Thanksgiving to check her esophageal health.  We continue to do Botox injections and baclofen daily to help with her cerebral palsy issues. She still sees a lot of doctors, but she is working so hard to make great strides and we are proud of her. 

She continues to have increased pain which she describes as “thunder & lightening” in her neck, lower back and legs. In September we added gabapentin to her medicine routine and she has done a lot better, but evenings and nights are still very rough. We haven’t been able to identify specific pain triggers and that is why we went to Dr. Gandhi.  Dr. Gandhi said that the reason we haven’t been able to pinpoint a trigger was because it is caused by nerve damage.  She says this is a lifelong problem and we will have to work together to make sure she is getting good pain management. Grace can often appear uncoordinated and jerky in her reflexes. The doctor said this is due to uncontrolled nerve pain. She is changing up her medication dosage and schedule for the gabapentin.

Dr. Gandhi also talked to us a long time about Grace's physical activity level.  We have always encouraged Grace to do as much as she could physically handle.  Dr. Gandhi told us that was not okay.  With Grace’s nerve damage she said she doesn’t need any more than 30 minutes of physical activity before having 15 minutes of rest time.  She said that the physical impact on her body from high intensity activity causes more damage and increased pain.  She said even if Grace does not want to stop the activity that she needs to be told it is time to sit down, rest and hydrate. She told us to encourage low impact activities for extracurricular physical activity (swimming, biking, golf, Pilates and yoga).  These will increase her muscle flexibility while not taxing her nervous system.

She loves kindergarten and she loves her teacher.  We are all working together to get her the accommodations she needs to be successful. She is excited to go to school in the morning and she has made several friends. Her teacher reports that on days when she is absent some older girls always stop by her room to check if she has heard from me and if she is sick. That is one of the perks of being in a very small school district.

Please continue to pray for our girl and for Gator Dog.  Gator Dog continues to struggle with ear infections (honestly I think the original one has never cleared and no he has not been in the water). He is always working so hard for Grace, but we can tell when he just doesn't feel well.  He goes back to the vet on Monday and this time Daddy is going to take him.

You are a blessing to our family.  We covet your prayers, love and support.

Blessings,

Alisha

Two years ago today . . .

2 years ago today we entered Our Children's House at Baylor for our first long inpatient hospitalization. How little did she and I know about how the future would unfold.  We have since learned about her Eosinophilic Esophagitis and spastic diplegia CP and of course, added Gator to our lives. Both of these diagnosis came as direct results from Natalie (our feeding therapist) and Margaret (her PT) who both insisted their was more to uncover and understand about our baby girl. Thank you for sharing this journey with us and thank you for praying for our family.

You make me brave.

On Friday night Miss Grace and I joined some friends for the premiere of Cinderella! It was a fabulous movie and the over all theme was have courage and be kind. It fell right in step for our family theme for 2015 about being brave.  Every day we sing the song, "You Make Me Brave" by Bethel's Amanda Cook. Jesus is the one who gives us the strength to face each new challenge. I admit there are days when I am sad and just want to have playdates and home days like other mom's and kid's. Instead we are out the door at 7:30am and off to therapy and our schedule is dictated by medication times, appointments and therapeutic massage. But I know God has a plan and a purpose for my precious girl and he is going to use her testimony to reach the nations for Him.

 

So speaking of schedules, we came home to about ten more days of bad weather. That meant missed appointments and rearranging our schedule. We wanted to have Miss Grace back at school on 3/16, but now we are shooting for 3/30. It doesn't make sense to start back to school and then miss 7 of the next 10 school days.

Today is a huge day for our girl. A day that is going to be rough on her, rough on Gator and rough on me. Please pray for her. We have to do some lab work this morning. This is always an awful experience for her, no matter how wonderful the nurses and staff are. We need the information and this cannot be avoided. Pray for peace in her little heart. Then after that we have to go see her muscular neurologist. He is one of the best in the country and we respect his opinion and recommendations. Because of her cerebral palsy everything from her waist down is effected. We have been on oral medication and she is in her leg braces, but now we have to up her botox and do injections in her legs to help with the spasticity. We pray this brings her some relief, although the injection process is going to be rough. Because of her feeding and oral issues she does not take the silly juice medicine well. We need her to swallow it so she can be kind of loopy and less resistant to the injection process (which will be harder on her). Can you pray that for me? 827 is at his new job and so it will just be me and Gator taking her today.

 

 

Thank you friends, for praying for my sweet girl. I cannot tell you how much the calls, texts, letters, care packages and visits meant to us while we were in the hospital. Every time we had a need God provided and met it before we could even worry. I know He is in control. Thank you for sharing this journey with us. I cannot imagine doing it without you.

 

 



Catching up - birthday, discharge and homecoming

When you hear people talk about "caregiver fatigue," it is a real thing.  We made it through the hospital stay with different issues almost every day.  The feeding program itself is amazing and successful. The drama of extended hospital living is ridiculous. Because this is a rehab hospital and the children are healthy, the kids (and parents) are out and about all the time.  It is like sensory overload at times. Add in 4 different snow and ice days and the fact that the kids could not play outside as much as they needed to and it was rough. The day we discharged was a weather/snow/ice day. I told them I would walk home and come back for my stuff if that is what it took. I was not joking either. Thankfully we made it home slowly and safely. When we walked into the house I felt like I got hit by a ton of bricks. I was exhausted. I could have slept for days. I many ways I am still not back to normal and emotionally I am tired too. I joke and tell 827 Gator and I need a recovery vacation.

The best part of the hospital, besides the program itself, is the connection you make with some of the other parents. Parents who get it and who are living it just like we are. Grace made some precious friends. This is what makes the difference for the kids. Kids who can talk about their g-tubes and their struggle with food like it was everyday life. Because for them it is every day life. We will never forget the friends we made and we hope we can remain friends for a lifetime. We still get together with families from our first long term inpatient stay - in fact just Saturday we celebrated sweet Isabella's 3rd birthday! She ate bites of pizza and a cupcake (which are safe for her). As a fellow feeding Mama, I think that was the best part of the party! Feeding success. It is slow and it is hard, but it happens.

Miss. Grace celebrated her 5th birthday at the hospital. Child Life did an amazing job throwing her FROZEN Ball! We make frozen fractal ice castles out of shaving cream, created rock trolls like Kristoff's family and played a game where we built an Olaf out of toilet paper. It was so fun and we were blessed to celebrate with about 60 friends, family and fellow patients! Everyone had a great time! Unrefined Bakery in Dallas did an amazing job creating a safe cake and Miss Grace ate two pieces! That was amazing and I was so thrilled!

We did lose more food groups at the hospital - legumes and corn. Those are hard losses for my baby girl. They had gotten her to eat a homemade safe hummus and safe black bean dip and she liked them. Her beloved popcorn and fritos are now gone too. It has been hard. She is eating okay. She is still drinking formula and will probably always drink formula to some degree, even as an adult. We understand that and just want her to keep up her oral intake.

Here are a lot of pictures from our stay. I have thousands I could upload but here are just a few . .  her facebook page and instagram have many more.

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 . . .

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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!