Tag Archives: alabama

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.

February 15, 2019 Dr. Lovlie

Over the past few days, Annadelle has been fighting her first infection since her AFM acute phase. It is a sickness I have been terrified of for four months now.

We were able to see our new pediatrician today for the first time, although it wasn’t under the circumstances I had originally planned for. I had scheduled a wellness check for her after her birthday next month, but whatever respiratory illness she has changed out plans.

Annadelle’s new pediatrician is Dr. Lovlie, someone who was recommended to me by my friend Nicole. She also had several good reviews on a Google so I decided to give her a chance. She was drastically different than our former pediatrician, but I liked her no-nonsense approach. I could tell from the way she spoke about Annadelle that she had done some research on AFM, something I was appreciative of after months of having to explain myself over and over to numerous doctors.

Dr. Lovlie informed me that bronchitis could not be determined from an X-ray like I was lead to believe at the urgent care office we took Annadelle to yesterday. She said what was more likely was that she was showing inflammation of her bronchial tubes because she had read such in the radiology report from the urgent care, and that could indicate a slew of respiratory infections besides bronchitis. She took a nasal swab from Annadelle and told us she would send it off to see exactly what bug she had, but it would probably be Monday before she got any results.

She teetered back and forth as to whether or not she would start Annadelle on an antibiotic in the event what she had was bacterial. I told her that because of Annadelle’s medical history, I would be more comfortable if she would go ahead and start her on it and she agreed. So, Annadelle started Azithromycin today and will continue it until Dr. Lovlie tells me otherwise.

Once we got home, Annadelle continued to run high fevers throughout most of the day. I am praying these fevers go away quickly. The last time I could not get her fever under control, we ended up with AFM. I’m sure you can understand why this is so terrifying for me. I’m so ready to live a somewhat normal life instead of being around doctors 24/7.

I think I may have forgot to mention in a few of my recent posts that Annadelle is now completely off the Gabapentin. We requested to wean her off of it while we were at KKI, it realizing she was on the highest dose possible (6ml 3x’s a day). While we were weaning the medicine, we noticed a significant change in Annadelle’s mood. She was much more sensitive and cried at the drop of a hat. She also had several night terrors that appeared to be very vivid based on her reaction. We spoke to the doctors at KKI about this but they assured me it was not a side effect. However, I have spoken to other parents who said their child experienced similar symptoms when going on or weaning off Gabapentin. A few of the parents in the parent group have discussed creating an AFM wiki of sorts, and if they do I hope they include information about Gabapentin seeing as to how many AFM kiddos are on it.

Now that she is off Gabapentin, she is only taking vitamins and supplements. We have also started using helichrysum oil on her daily. We had done some research on it while at KKI and learned it is a popular oil used for increased circulation and possible nerve regeneration. We have also ordered lion’s mane but have not received it yet. Lion’s mane is believed to aide in the regrowth of myelin, which is what was damaged on Annadelle’s spinal cord.

I’ll soon be linking the items or products we use on our “about” page for those that are interested in ordering it for their child or loved one with AFM.

Our plan for the weekend is to rest, hydrate, and heal. Chris is also super sick so I’ve been playing nurse to both dad and baby girl. Thank goodness I’ve had my mom here to pop in and check on them, too, because it is exhausting. Thanks, mamma!

If you would, please say a prayer for quick healing for Annadelle. We are hoping this sickness subsides quickly so she does not develop pneumonia. I would also appreciate some prayers for the sale of our old home. It is currently under contract and we are awaiting the results of the home inspection. We really need our home to sell for many reasons, but mostly so I can buy a car! I haven’t had a car since last April when we were in an accident caused by a distracted driver, and obviously we need one now more than ever.

January 5, 2019 High Hopes

There’s a closed Facebook group I’m in that’s only for parents of kids with AFM. With a bit more than 600 members, we share advice, stories of hope, and a whole lot of questions with each other. Because this disease is so extremely rare, we lean on each other for support.

Last night I was so relieved to read a post from another parent asking the question I’ve been asking myself for what feels like forever now, “Why my child?” This mom expressed in this post all of the frustration I’ve been feeling myself but have been too ashamed to say aloud except to a handful of close friends and family.

I grew up believing I would do big things. I always told my dad I would graduate from UGA and work for Cosmopolitan magazine in New York, but I never even came close. I don’t even know if Cosmo is in NYC, but the point remains that I had some big dreams. Those dreams fizzled away as I battled an extremely abusive relationship that sent me on a course far from what I had imagined. It seems those dreams have only drifted farther away as the years have aged on.

Now, as I sit in the passenger seat on the drive to Baltimore, I wonder if the course will continue to take 180’s. How long will we be in Baltimore? Will it be worth it? Will life always be like this, not for me, but for Annadelle? Will she always struggle as she is now? It’s so hard not to question the future, especially when my track record of making plans and those plans actually falling into place are basically ziltch.

I don’t want you to think I’m Negative Nancy. I can assure you I have put an extra effort into staying positive these days, but I want to be transparent here. I started this blog for other AFM families to read and realize like kinda sucks for us, but there is hope.

So, in an effort to manifest destiny, I will declare now that our journey to Baltimore will be worth it. I know Annadelle will see major gains at KKI, as I have been trusting God to provide Annadelle with a full recovery in order to use her story as a testimony to countless others. There are hundreds of people praying for her daily- praying for complete healing, comfort, understanding, faith, happiness, and so much more- so how could she not be blessed? The word says what we ask for in prayer we will receive. I believe it.

I also believe God shows us His plans through little oddities all around us. Whether it be a quick conversation with a stranger in line at the grocery store or a few words that stick with you from your favorite novel, He speaks to us in ways we don’t always expect.

For me, His reassurance to stop questioning and just trust Him came in the form of a song on the radio. Panic at the Disco’s “High Hopes”

Mama said don’t give up, it’s a little complicated
All tied up, no more love and I’d hate to see you waiting
They say it’s all been done but they haven’t seen the best of me
So I got one more run and it’s gonna be a sight to see

Had to have high, high hopes for a living
Shooting for the stars when I couldn’t make a killing
Didn’t have a dime but I always had a vision
Always had high, high hopes

I guess I’ll take my own advice and trust God that He is working on Annadelle’s full restoration. I’m just going to sit back and enjoy the long ride to Baltimore as Annadelle plays on her iPad and giggles as she conquers another level of Angry Birds.

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.