Tag Archives: Desoto’s

March 14, 2019 Annadelle Turns 6

Although we didn’t do much today, Annadelle said she had a great birthday. We slept in a little bit and spent most of the day hanging out.

My mother-in-law, Dorothy, drove in from Alexandria and will be spending two nights with us. Annadelle was excited to see her Granna but asked where Eli and Asher (her cousins) were. Granna explained that they couldn’t come because they had school. Annadelle has no idea that they are going to surprise her next weekend when they show up at her birthday party. A few other members of our family including Maddie and Woods, two more of Annadelle’s cousins, are coming in from Calhoun county (5 hours away) for her party on the 23rd.

She had a lot of friends send her video messages wishing her a happy birthday. She’s about like I am when it comes to getting attention or receiving compliments. When told, “Happy birthday!” she usually replies with, “I heard you.” 😂😂😂

Annadelle was super excited to see this beautiful yard sign display outside of our house this morning! A friend of mine has a friend who runs Sign Gypsies, and that friend had contacted me about putting up the display. Apparently she had been following Annadelle’s story and wanted to do something special for her. Things like this are so thoughtful so I hope some of my readers will check out her services. Please give her a call if you want an adorable display like this for your kiddo or special event!

Annadelle has asked that I make her a birthday cake, not buy one. Of course I couldn’t turn down her request. She was able to help decorate with the sprinkles.

She also received many packages today from friends far away. She spent a lot of the day playing with all her new toys and riding her Barbie camper that she got for Christmas.

For dinner Annadelle requested that we eat at Desoto’s because she said they “have good chicken and fries.” It is about a block from the beach so we walked over to the handicap access mat in Gulf Shores and let Annadelle put her feet in the sand. Since being in the hospital for 5 months, it had been quite a while since she had visited the beach. When she put her feet on the sand, she told her dad, “I want to walk.”

On the ride home, we drove by Annadelle’s school since Dorothy had never seen it. When we passed the fire station, Annadelle told Dorothy, “We went on a field trip to the fire station. That was when I was walking.”

I had to hold back tears as I listened to her say it very matter-of-fact. It almost felt like she didn’t think she would walk again, like stories of before the hospital are “when she was walking” and the present day is “now that she can’t walk”. I am still praying every night that God touch her, heal her, and let her walk again. It is to hard to have patience when you are waiting on God’s time. Meanwhile, she’s missing out on so much.

I told her we wouldn’t do therapy today since it is her birthday, but I thought having her sit on a peanut ball wouldn’t be too much work once we got home. She wasn’t able to sit on the smaller ball we have a few days ago but she did well on the larger blue one. I put cushioning around her to make sure she didn’t hit her head if she fell, but she was able to hold herself up relatively well. Eventually we turned her around and put the coffee table in front of her and she did even better. I am hoping time on the peanut ball will help to increase her core strength through balancing and also her legs from keeping her stable.

Tomorrow she has a doctor’s appointment in the morning and her first pool therapy at 1:45.

Please continue to pray for our precious girl that she may strengthen her core muscles and her leg muscles so that she may walk. It is my constant prayer.

December 28, 2018 Planning for KKI

We received word from Kennedy Krieger Institute in Baltimore that plans for our inpatient arrival are underway. Our coordinator, Sharla, has been extremely helpful by helping us to learn about what to expect during our stay.

She called me today to let me know that because we are expected to arrive on January 7th, she cannot submit for insurance benefits until January 2nd. This is because a new benefits year begins on the 1st so they are not able to receive an official “yes” from Blue Cross until January 2nd. This means we are kind of in limbo until January 2nd when Sharla is able to submit for benefits. Hopefully we will hear back from BCBS rather quickly since we have been assigned a case worker (Tamara), which we have learned typically makes the process move a little faster.

In the meantime, we were told to go ahead and book our flight and book a hotel room. We have been referred to both the Ronald McDonald House and The Children’s House, but like most accommodations around large hospitals, there is a waiting list and rooms are not guaranteed. However, if for some reason we are not able to get a free room, we were told there are many hotels close to the hospital that give discounts to KKI patients.

Even though we are inpatient, we will still have to get a room because only one parent can spend the night at the hospital. The rooms are shared with another patient (and parent) so space is limited.

We have also been planning for life after KKI in the little bit of time we have left at home. Yesterday we traveled back to USA Children’s and Women’s Hospital for Annadelle’s PT evaluation by her new long-term outpatient therapist (who we learned was Cameron). Annadelle only met her a time or two while we were inpatient at USACW but she seemed to like her. On the way to the hospital, she kept saying, “I wonder who my new PT and OT will be?” She was super excited to learn that Miss Aly would be her OT again.

During the PT evaluation, I made a comment to Cameron that I thought I had noticed her right quad engaging in the bath the night before and she agreed that she believed she felt a slight firing. I still haven’t noticed the hip flexor moving but if the quad is moving, that is progress!

Also while in the eval, Dr. Maertens came by to see Annadelle. He had not seen her since we left USACW, but he had called me to check on her about a week ago. I sent him a text while we were on our way back to Mobile to let him know we would be there if he wanted to come see her. He seemed very excited that she had made as much progress as she had, but he did tell us Annadelle needs to lose some weight. He suggested a low carb diet and said that if she is able to drop the weight she has put on since being in the hospital (which is a good bit), that will help her in PT, especially using her core. Chris and I immediately put her on a diet, eliminating a lot of bread and basically all candy that she had been having pretty regularly. It’s hard to tell your child no to things they want when you’ve watched them on the brink of death.

Last night we played with Annadelle a while in the floor using a medium-sized ball and a large pillow that my aunt Jeanie purchased for her (thank you, aunt Jeanie!). The pillow is so helpful because he gives her just enough support to help her stay sitting up. I still put another pillow on her left side because she is much weaker on that side and hasn’t been able to stop herself from falling over once she leans too far. She can stop herself on the right side, though.

Today we braved the wet weather and drove to the courthouse annex to get a handicapped placard. The employees at the annex were extremely friendly and gave Annadelle a few small gifts like candy and hair bows. It really is amazing how much special attention she gets when we travel out in public when people see her wheelchair. We also get a lot of stares which can be uncomfortable, but we are getting used to it.

For dinner we visited our favorite local seafood restaurant, Desoto’s, for a special meal. We are pretty tired of eating out since we have done it for so long now, but we wanted to experience Desoto’s before going to Baltimore for a few months (possibly). While we were there, Annadelle had to use the restroom which we learned was not handicapped accessible. An employee helped to hold the door open for us to enter the restroom and made the comment they had just remodeled to make the stall doors wider, but I could barely fit myself in there, much less Annadelle and her wheelchair. I ended up having to leave her wheelchair outside the stall and carry her to the toilet, leaving the stall door open. She is old enough now that doing that is embarrassing for her, but I could not get her in there any other way. Desoto’s would be a lot better off just using the restroom as a single restroom. I’d hate to see how an impaired adult could function in there with a larger wheelchair alone. But honestly, I never thought about anything like that until Annadelle’s diagnosis.

Please continue to pray for Annadelle’s complete healing, and specifically for her left foot to “wake up”, as well as her right hip flexor. We are trying to stay strong in our faith and have confidence she will be a testimony to so many.

Thank you again for everything. We love you all.