Monthly Archives: October 2019

October 21, 2019 Cactus Cantina

Tonight is one I will never forget.

A few weeks ago, we rode by a local Mexican restaurant called Cactus Cantina on our way home one night. As Annadelle looked out the window, she said, “Mommy?”

“Yeah?” I said.

“The next time we go to Cactus Cantina, I want to walk in there,” she replied.

Chris and I looked at each other, smiling. “Okay,” I said, “The next time we go there you can walk in.”

Immediately, I started planning a time to go and decided to invite a bunch of friends and family to join us. I thought we could do it as a surprise and have her friends encouraging her to walk in. You see, she’s been a bit of a turd about walking lately. She tells us it is easier to use her chair so there are times she will whine and cry when we try to get her to use her walker. “It’s hard!” she says.

When we realized she could probably use her walker a lot better than she made it out, we started adding more walker time to our at-home therapy. We learned that if she is distracted, she can make it over 2 hours at a time in the walker. That’s when we decided to start trialing wearing her KAFO all day in preparation for transitioning to the walker most of the time (instead of the chair).

When it came time to leave for Cactus Cantina tonight, a huge rain storm approached and made it difficult to see to drive. Lightening and thunder struck as we made our way to the restaurant. The devil sure was trying to ruin the night, but as usual he did not succeed. We pulled up and Annadelle noticed a blue Jeep pulling in just like the Watson‘s Jeep. “Is that Barrett and Sims?!” she exclaimed.

“I don’t know,” I replied. “It could just be a blue Jeep.” I was trying hard not to ruin the surprise.

Then she noticed Uncle Keith sitting outside under the awning. I thought surely she would figure out the surprise, but she didn’t. Even when she saw Barrett and Sims walking up, she thought they were just randomly coming to eat at the same restaurant we were. “We sure are seeing a lot of people we know!” she said as we made our way to the door. 🤪

Once she turned the corner and saw the crowd of people looking at her, she knew what was happening and tried her hardest not to show her embarrassment. Her friends all stood at the front door and said hello, and Grayce even gave her a hug. Soon after the crowd began to clap for her and we made our way to our seats. All in all, I counted 32 people who showed up for her surprise and to encourage her, some of whom we didn’t even know.

Annadelle with her friends Evie, Oakley, Laekin, and Grayce at Cactus Cantina

I wish I could explain the feeling I felt as I watched her interact with her friends, and how wonderful it was to see the kids treating her as if she didn’t even have a walker. She fit right in with them as if nothing was wrong, and it warmed my heart to know that although kids can be cruel, they can also be very loving. I am beyond thankful for these kids and for their parents who I am sure have talked to them about Annadelle, kids like Annadelle, and the concept of inclusion.

Grayce and Annadelle catching raindrops with their tongues on the way out

I know there was a time when I was praying and wishing for this day.

My friends, it has arrived. God answered my prayers and is continuing to heal Annadelle. I knew that if we stayed faithful to His promises that he would give us what we asked for in prayer. I have no doubt she will continue to recover.

And when that happens, what on earth will I write about then? 🤓

October 20, 2019 Milestones

We’ve had a fun weekend with friends and family in town for fall break. Annadelle’s fall break was Friday-Monday the week before, but she didn’t really get to enjoy it because she had strep throat.

Annadelle at urgent care being treated for strep throat

She got some antibiotics and bounced back pretty quickly, though.

Annadelle and her friend, Kade, who lives with TSC- a rare disease causing tumors throughout the body

While our close friends Carrie and her son, Kade, were here, we took a trip to the Hangout in Gulf Shores only a few minutes from our house. Carrie wanted to get some photos of the big waves coming in from the approaching storm so we went to the public beach access at the Hangout because there is usually a wheelchair mat there that goes out to the beach. Unfortunately the mat has been removed from that location and I wasn’t able to find where it was moved to, if it was indeed moved. So Carrie and Kade walked out to the beach while Annadelle and I waited on the sidewalk. She was really bummed out that she didn’t get to go on the beach.

Annadelle was upset that the City of Gulf Shores removed the handicap accessible beach mat at the Hangout

After Carrie and Kade came back to the sidewalk, we ended up over inside the Hangout and caught the “foam party” they hold on the weekends every hour. Annadelle has always wanted to go do that, but we’ve been hesitant not to mess up her wheelchair. The smiles and giggles that came from her playing in that foam were well worth the cleanup.

Annadelle and Kade playing in the foam at the Hangout
The aftermath of the foam party

As you can probably tell from the photos, we have been practicing Annadelle wearing her KAFO brace on her left leg for long periods of time in anticipation of taking her walker to school on Monday. Last week we had another IEP meeting to modify her current IEP to include the evaluations from PT and OT. The team decided it would be best to discontinue using the mobile stander at school for an hour a day and just put her in the walker for that time period. The PT is also going to have her use her walker during P.E. one day a week.

She does well in her walker compared to a few months ago, but she has a lot of balance issues. She can’t walk in it without the side and back locks on because she leans to the left when walking. We are hoping the more she uses the walker the stronger she will get and the more balance she will have. I think a lot of it is just having confidence so we will see.

Today we took a trip to HomeGoods (my new favorite store, by the way) and didn’t take her wheelchair. She was able to walk into and around the store by herself (with the back and side locks on). It took forever but compared to a year ago at this time, she has made huge strides. Chris and I continue to be eternally grateful for the progress she has made and have faith that she will continue to recover. There is no doubt in my mind that she will one day walk with that walker with no problem at all, and no locks on.

Annadelle during her first WALKING trip out in public!

We have hit a recent problem with therapy, as we have not been able to find a facility locally that will accept her as a patient. We continue to be told she needs to see a spinal cord injury certified therapist, but we can’t do that without traveling a good ways. Our schedules just don’t allow for it and it isn’t beneficial to Annadelle to travel so far for a 45 minute appointment.

We thought we had a therapist locally who would accept her (because she had agreed to do so the week prior), but that therapist decided not to accept her after all. I’ve been livid over her decision and have spent a lot of time praying about it. Two nights ago I made the decision to send her an email that I had initially intended to be an ugly one, but the Holy Spirit grabbed me before I could let that evil come from my lips (or fingertips, in this case). I ended up just telling her how disappointed I was in her decision not to accept Annadelle as a patient and urged her to reconsider. I haven’t heard back from her and doubt I will, but I feel better knowing I plead my/Annadelle’s case and did all I could. If it doesn’t work out, I know that wasn’t God’s plan and there will be another therapist who will be willing to fight for Annadelle.

Annadelle showing off her book report

Annadelle is doing very well in school and made all A’s and B’s on her report card! She has been working so hard in at-home therapy and at school to catch up. We are so thankful to the care team at school who have been working to get her caught up. We really are blessed for that.

Annadelle’s first school photo- 1st grade

We received her school picture proof this past week and I cried like a baby. She looked so beautiful and I just kept thinking about all the things that AFM took away from us this past year, included her first school photo from kindergarten. It’s stupid stuff to some people, but when you don’t get to experience it, it’s like the entire world ripped from you. I think not being able to experience some important milestones for us has made us much more appreciative of what we are able to experience now.

I was telling my FIL this morning that I thought I would dread seeing the Facebook memories from a year ago because our time at USAWC hospital in Mobile was quite traumatic for all of us. I would be lying if I said I had not woken up in sweats and crying dreaming about those nights in the hospital. But as time has passed, I realize I am able to look back on those times and see how far she has come, not what she can no longer do. Of course I still have moments of great sadness, but mostly I am just so grateful to God for what we still have. She’s here with us. She’s thriving. She’s loving life. And she’s continue to defy odds like never before.

She’s truly a miracle, and for that I couldn’t thank God enough.

October 6, 2019

I had to take a break from reality today, a little time to just stand at the shore as the waves crashed over and over. It was a time to talk to God and listen for an answer as I closed my eyes and took in all the sounds and movement around me.

How peaceful it was to just be in His presence and soak in the feelings of comfort and warmth. It wasn’t until today I realized I needed that.

We have finally begun to settle into life as we know it. Things are a little rocky now and again, but overall we’re getting our groove back. The days are a lot happier now that our grief has progressed and a good bit of time has passed.

I didn’t even update the blog after the yearly anniversary of AFM had reached us. I thought I would dread that day, but it was just like any other. It’s almost as if I had convinced myself that we were racing time, like if we reached one year and Annadelle wasn’t walking independently that meant she would never walk again. But after all this time I realized that was just a lie of the enemy and there is no cap on recovery. She continues to make progress every day and will continue to do so for many years to come.

I wish I could give you a description of her recovery thus far, but it is really just little things we notice. For example, she can transfer from her walker to her wheelchair by herself, or be in the walker and pull the seat down, then sit by herself. It just continues to amaze me how God is answering our prayers. And although it may be much slower than we have prayed for, God fulfills his promises. Always.

Last week Chris was able to convince a physical therapist locally to take on Annadelle as a patient which will be a huge blessing for us since it is so much closer to home than Fairhope (literally 5 minutes from our house). I have to call and check tomorrow to make sure all of the paperwork is squared away before she can get in for an evaluation, then hopefully get on a schedule several times a week. We will miss her therapists in Fairhope, but the drive there just was not worth it with her busy school schedule.

I’m quite tired so I’ll keep it short tonight. I think there are probably a lot of updates I have forgotten to write about so I’ll write again tomorrow. For now, please continue to pray that our sweet girl will walk independently again. Be blessed.