Tag Archives: Thomas Hospital

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.

July 9, 2019

Since my last update, there have been a lot of changes in our lives. First, Chris’ youngest son, Hayden, moved in with us. He is 17 years old and is starting in to his junior year. He’s been doing summer workouts 3 days a week and got a job at a car wash, so he has met plenty of people and made friends quickly. Annadelle loves having Hayden here.

Updates are few and far between nowadays because progress is much slower. Although we see therapists or doctors pretty often, each day is pretty much the same ol’ same ol’.

It wasn’t until today that I was able to see the visual representation of the progress she has made. To be honest, I don’t see the progress like others do because I see her every day. But for those who go months without seeing her, the progress is much more evident.

In June, my sister-in-law, Heather, came down with her two boys, Eli and Asher. The boys are wonderful with Annadelle and they are really good about including her in whatever they do. They each love to be her little helpers.

While they were here, we all went bowling for the first time since Annadelle’s AFM onset. It turns out she really loves to bowl with help of the ramp. She was able to pick up a 6 lb ball easily and put it up on the ramp which is a big improvement. She is slowly getting stronger.

Our family also had a family reunion in Orange Beach during the month of June. Several of our extended family members have been keeping up with Annadelle’s progress on Facebook and were excited to see her in person. Some of our family members gave Annadelle some money while we were there. Later that week, we spent it on a Nintendo Switch which is something the recreational therapists used while we were at KKI in Baltimore. We were hoping it would help Annadelle with her left hand coordination and fine motor skills. And alas, it did because a week later Annadelle was able to give a “thumbs up” on her left hand for the first time since she got sick.

Later on, Annadelle and I traveled back to our hometown to attend VBS at my mother-in-law’s church. Annadelle used to go there with her Granna on Wednesday nights so the church members know her very well.

The first day I dropped her off, I felt very overwhelmed. Taking care of her all by myself was extremely difficult because I am used to sharing the duties with Chris. Needless to say, the first day of VBS I was an emotional (and physical wreck). As I watched her struggle to fit in on the first day, my emotions got the best of me. I went to my car and cried. I don’t even know how to explain what emotion I felt. The closest thing I can think of is “powerless”.

As a mother, all I wanted to do was to make sure she fit in. I didn’t fit in a lot as a kid. There were times I was picked on and left out. Even as an adult I have been left behind by friends as they find newer, better friends to hang around with on more than one occasion. It’s an ongoing issue that I really struggle with, and I guess I projected a lot of that fear from what happens to me to it happening to my child, especially now that she is disabled. It was always a fear of mine and is now a billion times worse so my emotions simply engulfed me in worry and sorrow as I sat there in my car.

Luckily, I was able to call one of very few friends I have and let it out. She reminded me of God’s promise and helped me to calm down. I think I really did have a panic attack.

By the end of the week, my fears proved to be nothing as Annadelle made many friends. The VBS staff were wonderful with her and I’m so glad she had such a wonderful time.

While we were In Calhoun county, we were able to see a lot of our family again. My cousin/more-like-a-sister Robin and Heather, along with our kids, went to see Toy Story 4 at the new cineplex in Pell City. The kids had a blast just being kids.

Annadelle is continuing therapy 3 times a week until school starts. We don’t have a schedule for when school starts but we are hoping to go at least 2-3 days a week. She will be evaluated for PT and OT at school after a few weeks. Right now we are working on her IEP and will meet with the team on the 18th to discuss the draft. Annadelle is so excited to be going back to school. As for me, I’m an absolute mess over it.

At the end of June, we were blessed to receive Annadelle’s new orthotic braces. She got an AFO for her right leg in the hopes it would help her with the hyper extension of that leg. She also got a KAFO for her left leg since she is not able to bear weight on it very much. He quads and glutes are firing in that leg, but she is still very weak. The KAFO just helps her to support the weight of that leg.

While in therapy, one of our goals is for her to be able to walk with the assistance of a walker. Getting used to walking is one thing, but learning to navigate and support yourself on a walker is another. It is a very slow process but we are praying that in a few months she will be walking with the walker. I wish I could express what an absolute blessing that would be for Annadelle. I have prayed for that continuously and respectfully ask that if you’re reading, you do the same.

The day she was fitted for the braces, she stood by herself for about 45 seconds to a minute. This was the first time she had stood by herself since the onset. I did not realize just how tall she had gotten until then. My little girl isn’t so little anymore. I feel like I missed so much of her growth while in the hospital. When she was admitted, it seems that she was so tiny. Now she’s a “kid”. I’m having a hard time with that realization.

We have ordered a Crocodile walker for Annadelle. We think it will arrive within 2 weeks.

Annadelle was also approved for an Amtryke (adaptive bicycle) through the local AMBUCS chapter. I’m not sure when it will come in, but I was told the chapter is covering the entire cost of the bike which is over $600. What a blessing! She has used the bike before at KKI and Children’s for therapy. The bike will allow her to spend some time outside having fun while also getting in a little therapy for her legs to help strengthen them.

Lastly, I’d like to share this amazing progress Annadelle has made after receiving chiropractic treatment. In conjunction with therapy, you can see in the comparison XRay just how much her posture and core strength have improved. The first X-ray was taken at the beginning of May, the second one was taken yesterday. I am just in shock of how much these treatments have helped in a relatively short period of time. I am so thankful to our friend John who referred us to GCFC.

I’m hoping to have another update soon of Annadelle walking in a walker independently! I am praying it will come soon. Please help me to pray for that. As always, thank you for the continued support.

Until next time…

May 23, 2019 A Snail’s Pace

Since the beginning of May, Annadelle has been in an intense day treatment therapy program at Thomas Hospital, one of only two hospitals (including Children’s) to offer such program in the state of Alabama. She goes to therapy every single day for 4 hours, although she rotates disciplines (meaning Monday, Wednesday, Friday is PT; Tuesday, Thursday is OT).

Her therapists- Lisa and Jessica- have been such a blessing to us during this time. It is so refreshing to know they have not given up on her. They take a proactive approach to her care and are doing a lot of research in to AFM.

At the beginning of the month, Annadelle was unable to use her quad muscles functionally. We could also not feel a contraction in either leg on those muscles. If you saw videos of her picking her legs up, it was the hip flexor muscles you saw working, not quads.

After working with Lisa and Jessica for almost a month daily, taking advantage of suspended treadmill exercises, the therasuit, and the therapy cage, Annadelle has shown progress. She is now able to use both of her quads functionally and we are also able to feel a contraction on both legs. This is a huge step for kiddos with AFM, as many may use the muscle functionally but be too weak to feel a contraction.

With that being said, Annadelle’s legs are still extremely weak. Her core muscles have improved and she is now able to sit herself up from a supine position. This means we are now able to put her in her room or in the floor for longer periods of time because if she falls over she can push herself back up. She still does not use her left arm for much weight bearing, but Chris and I are going to start constraint therapy at home for about an hour a day to see if that helps her left arm. Constraint therapy is where you block off one limb in order to help the other improve, essentially forcing the weaker limb to work harder. Because her right arm is much stronger, she often opts for the easiest way to do something and just lets her left arm dangle even though she is able to use it.

Her therapists have been working to strengthen Annadelle enough that she can crawl, which is a big milestone for her. Although she isn’t able to bear much weight on lefty yet, she still tries to crawl periodically. While I was cooking dinner the other night, I had put her in her room to play with her Barbie house. A few minutes later, I hear, “Help! Help!” I ran through to her room to find her with her legs crossed under her, face down. She had been trying to crawl closer to the Barbie house. She was laughing and said, “Well, I tried!!!” I wish I could express how proud I was of her for trying something so simple. I never imagined I would take crawling for granted when she was 6 years old, but when she gets to that point I can promise you I will never again take it for granted.

Annadelle after church on May 19th. She is sporting her new purple wheelchair from NuMotion. It is much lighter than her old wheelchair and she is able to push herself around fairly well.

This past Tuesday, I had a meeting with the school after I had requested a special education referral for an IEP. I don’t want to post too much about it because the situation is still ongoing, but I will say the meeting was not as bad as I expected it to be.

I ended up hiring a Special Education Advocate to help me through the process and I’m so glad I did. Our advocate, Deborah Jordan, has been a blessing in that she has helped us to navigate the crazy road of IEP. She attended the referral meeting with me via telephone and jumped in when she felt it was needed. She also helped to explain all the terminology after the meeting and what to expect moving forward.

If you are in a similar situation with IEP, I would highly recommend hiring an advocate.

Annadelle’s referral was accepted, so she is now going through several evaluations. Her speech, vision, and hearing screenings were done yesterday. I won’t know what the results of those are until our next IEP meeting where we will discuss eligibility.

Annadelle has also been visiting a chiropractor that came highly recommended to us. Above are some scans that were completed at the clinic because we had concerns Annadelle’s left leg was now shorter than her right. The left leg is the weaker leg and it is not unusual for kids with AFM to have limb length deficiencies after onset. We also spoke to an orthopedist about this and he suggested we have xrays completed to determine if there was actually a length difference or if her pelvis was twisted.

Thankfully, the problem is not a leg length deficiency- it is the position of her pelvis. Her left pelvis is rotated posteriorly and her right pelvis is rotated anteriorly. To combat this, we have been doing stretches with her and also taking her to see Dr. Alicia and Dr. Sharkey, the chiropractors, who seem to have taken a keen interest in her case. They believe that once her pelvis is properly aligned and her left side of her core has strengthened a bit, it will be much easier for her to walk. Right now we have 52 visits lined up and are going about 3 times a week on top of therapy.

We were also blessed recently with an order for a KAFO (knee ankle foot orthotic) for her left leg and an AFO (ankle foot orthotic) for her right leg. I took her to see Chad (the orthotist) last week so he could cast her legs for molds. He will make the orthotics at his office and call me when they are ready.

I am so stinkin’ excited for her to get her KAFO because I think it will definitely help to practice walking and help her strengthen her core muscles. I have basically been stalking pages of my friends whose kids have or had KAFOs and noticed almost all of them saw drastic improvements in core strength. The hope is that when she is standing with the KAFO locking her leg and providing her more stability underneath, she can focus a little more on the core to strengthen it.

We will see.

As usual, thank you for keeping up with my updates. I know they are few and far between now and there is a lot of information I didn’t include in order to keep the post relatively short, so if you have questions please feel free to ask.

Please continue to pray for our warrior princess, as we are moving at a snail’s pace with recovery. We are still believing and praying for complete restoration of her body.

May 14, 2019

I know, I know. It’s been a HOT minute since I updated. But listen, I’ll be very frank about this- I haven’t been in a good place.

Once we came home and began to adjust to life as we now know it, I lost myself. I guess you could call it depression, but it felt like so much more than that. Being lost. Hopelessness. Neglect. Immense sadness.

Imagine writing in a notebook or a journal. Think about your day and write it as it was. “I went to work, then I came home and made dinner.” The next 52 sentences are written to chronicle what happened in your day. The next line becomes just that- only a line. It doesn’t stay straight, but it strays from where it should be and before you know it your pen is all over the paper, a tornado of ink flooding what was once a well thought out description of what you did that day. Now you can’t read what you wrote. All you see is black.

That’s what my life has felt like since October 1, 2018. A swirl of black blurring the images of what life should have been.

Through a lot of prayer, I’ve managed to bring myself out of that hole, at least for the most part. There are still days where I struggle to maintain a smile or be joyful. I think that is to be expected.

Since my last post, there hasn’t been much that has happened. We are just continuing to live our lives and work on Annadelle’s therapy.

This past week we started an intense day treatment program at Thomas Hospital where Annadelle has been attending PT and OT three days a week, but now it is every single day from 8am-12pm. If I’m honest, it’s kicking my ass. I thought initially it was because I am not used to getting up so early, but I now think I can attribute most of my general feeling of being tired to a low carb induction which I began May 8th. This is known as the “low carb flu” that sometimes results as your body excretes excess sugars in order to use fat for energy rather than carbs. Since I’m almost through the first week, I’m know that sluggish feeling will go away soon.

Chris also bought me a car. It’s a Jeep Wrangler and I absolutely love it. However, as our luck would have it, the engine went out on it the day after we bought it. And of course we bought it from an individual so we thought we were screwed, but alas God stepped in and made it right. The guy who sold us the car ended up sending us money to fix the engine, so we weren’t out anything. Chris ordered an engine and has been putting it in for the past week and a half by himself. He used to work as a jet mechanic so he has a basic knowledge of engines and whatnot. Praise God for that, as the labor costs would have been twice the amount we paid for the engine.

Easter was hard for me. I have always enjoyed Annadelle running to grab Easter eggs with her cousin, but she wasn’t able to do that this year. We decided to take her to the beach and put her on a sled we have and pull her around to find the eggs on the beach. We invited a few friends to come but they all declined so our Easter was rather lackluster. It just made me realize how much she isn’t able to participate in now which made me feel so much worse.

That feeling has improved slightly since Annadelle was able to get her new, lightweight wheelchair. She moves herself around a lot more now, especially around the house. It obviously doesn’t help at the beach or at a playground, but we are steadily praying that we need some major improvements with therapy.

As of the end of last week, Annadelle “walked” on a treadmill at therapy. She was in a harness with virtually no weight being placed on her lower extremities, but she was moving her legs in a walking motion without the help of anyone. I posted a video of this on my personal Facebook page that I hope to upload to YouTube soon for our readers to see. I’ll update when I get all the videos uploaded. Her therapist, Lisa, and myself were completely shocked. She had never gotten on the treadmill and moved her legs as she did. It was the first day in a long time that I felt a true sense of hope that she will one day walk again.

With that being said, Chris and I decided against putting her through a nerve transfer surgery. The short reason is because we just didn’t feel comfortable about it. If we change our minds, we’ll call Dr. Moore’s office to see if we can reschedule, as her surgery was scheduled for May 22. When I told Dr. Moore’s office we wanted to cancel, they didn’t ask why. A simple, “Ok, thanks,” and the conversation was over. It made me feel like my kid was just a number and they would move on to the next without hesitation.

I’m sure there’s a lot more to update about since I’ve been MIA from the blog for so long, but I’m exhausted and ready for a good night’s sleep. I just wanted to hop on with a quick update and a thank you to those who check on us periodically. The days and weeks following trauma are hard, but the months after are much harder. Reality sets in and you are often forgotten, so I just want to say a special thank you to those who have continued to keep our baby girl in your prayers. Our journey is far from over.