Tag Archives: Kennedy Krieger Institute

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…

March 13, 2019 Birthday Eve

Tomorrow is Annadelle’s 6th birthday.

She is so excited about her birthday and her party that I have scheduled for the 23rd. We decided to do an indoor pool party for her so that she will hopefully be able to interact more easily with other kids. She moves more freely in the water and I’m excited to get a bit more therapy in while she’s having fun.

My mother-in-law is coming in to town tomorrow for Annadelle’s birthday. Right now our plan is just to bake cupcakes sometime during the day and possibly go out to eat as a family at night. When given the opportunity to choose any restaurant, Annadelle said she wanted to go to Chick-fil-A.

As far as therapy, we have been continuing going to Fairhope each day. Her therapists have told us (basically) that we need to focus more on her core strength than we do her legs, because if she does not have enough core strength to support herself, she can’t walk.

Our goal is to continue putting her in the stander and using the knee immobilizers. We are now going to incorporate a lot of time on the floor to practice rolling and balancing. Exercises like partial sit-ups and reaching is going to help increase the strength in her core, and hopefully she can walk soon after that happens.

I am not overly impressed with the facility, but there is nowhere else closer to us that will accept her as a patient. Thomas rehab is not set up for kids with severe spinal injuries. We have decided to drop her rehab from 5 days a week to 3, possibly 2. We are going to replace those missing days with swimming at the community center. It will be a lot of work on us, but traveling to Fairhope each morning takes the majority of our day so we aren’t able to get as much in at home as we would like. Right now time is precious to us. I’m praying we are making the right decisions to ensure she is able to have as much recovery as possible.

I received a call today from one of the neurologists at Children’s of Alabama who is requesting that we come back to Birmingham so that the neuro team can see her in clinic. They also want to do another MRI and place her under anesthesia. I asked what their reason for a repeat MRI would be and was told it will help them to determine what kind of recovery she will have.

For some reason this phone call infuriated me. Almost every single doctor we have spoken to, with the exception of Dr. Pardo at John’s Hopkins Hospital, gave us conflicting information about AFM and recovery rates. Many doctors simply don’t know outcomes because there is not enough information to provide accurate statistics. Many, many, MANY of the doctors we have spoken with base predicted outcomes on outcomes from patients with different diseases, not AFM.

The truth is this neurologist that contacted me today wants us to have an MRI because Annadelle’s diagnosis is so rare that a repeat MRI offers a valuable learning experience to the team. I am simply not willing to put her through yet another MRI, needles, or any additional time in the hospital that isn’t absolutely necessary for her recovery.

Besides, Dr. Pardo already told us he believed she would make a full recovery, so what would happen if these less experienced doctors told me something different? I’d be an absolute wreck, that’s what would happen. I’d much rather continue to put my trust in God that she will walk again. Chris agreed.

Prior to therapy today, I met with Jeremy, a rep from NuMotion, and Patty, an employee of Children’s Rehabilitation Services in Mobile. We had the meeting in order for them to measure her for a wheelchair and to complete a quick exam to see what she could do and what she couldn’t.

We decided to order her a Ti Lite Twist manual wheelchair. The chair is the exact same one she used at KKI and is light enough that she can easily move around in it. When compared to the other chairs, this was will allow her to grow width-wise and length-wise over the next three years which is the amount of time the wheelchair will need to last (at a minimum) before our insurance will pay for a replacement (unless there is a problem with the chair, in which case it is under a warranty).

She will also be getting the SmartDrive power assist option that will allow her to go long distances. She can push her wheelchair a bit, but she tires out very easily. The SmartDrive will make it easier for her to get around school when she goes back or even help on a simple trip to the store. Check out this link for more info about the SmartDrive. There are also videos at that link to show how it works.

Shelves in her room feature artwork that she created at KKI.

In preparation for my MIL arriving tomorrow, my mom helped me to get Annadelle’s room cleaned out and organized. She had received so many toys and gifts in the hospital that we literally did not have enough room for everything. We have been going through stuff to donate (from our entire house, not just her room) and ended up with two large carloads that my mom and I took to her church’s manna house today to be distributed to locals who are in need of those items.

We will continue working to gather her needed therapy items so that her room can be converted into a small gym. Many of our friends have purchased several items from our Amazon Wish List to help us with these items, and for that we are forever grateful! We are still looking for several items from our list. I have been scouring Marketplace and Craigslist to see if I can find any equipment used, but so far I haven’t had any luck.

I can’t thank our friends and family (and even strangers!) enough for all of the support you have offered over the last several months. Please continue to pray fervently for our sweet girl that she will walk again. I would give anything to see it happen.

January 6, 2019 Baltimore

After two days of traveling, we finally made it to Baltimore. The trip itself wasn’t too bad. We didn’t stop any more than we usually would have and Annadelle traveled pretty well. It helped that the car we are borrowing has a DVD player Annadelle can watch from the back seat, so she spent a lot of time watching Despicable Me 2 and Hotel Transylvania 3.

When we arrived in Baltimore, we went straight to the AirBNB we had reserved from tonight until Thursday morning. We weren’t sure if a room would be available at RMHC of Baltimore or a place called the Children’s House, which is kind of like RMHC but is sponsored by Johns Hopkins Hospital. They had told us we would hear about a room 72 hours in advance, but we never heard anything. I ended up calling to check on the status of a room today and learned the earliest a room will be available for us might be Thursday. We have been on a waiting list at both places so here we go again with a room situation. It is harder for us this time because only one of us can stay in the room with her at KKI, so the other has to have a place to sleep overnight, unlike when we were in Birmingham and we both just stayed in the room with her.

Anyway, when we walked in the AirBNB we noticed an overwhelming smell of cat urine. I am extremely allergic to cats and immediately began sneezing when we walked in, together with a runny nose. Chris is allergic, too, so we knew there was no way we could stay there. We ended up booking a room at the Holiday Inn Express where Chris is an IHG Rewards member. We were able to get a slightly discounted room price, but it was still $100 for the night, as compared to the AirBNB I had reserved totaling $300 for 4 nights. Oh well, I guess you get what you pay for.

The AirBNB host had also listed the properly as handicap accessible, but Annadelle’s wheelchair could not even fit down the hallway to get in to the bedrooms. See the photo below.

Her wheelchair is relatively small as it is, but even its small size didn’t help when trying to get down this hallway. I have never seen such a tiny hallway in all my life.

I have contacted the host requesting a refund since the listing is obviously not handicap accessible, but we may end up losing the money we spent. Chris isn’t too happy.

After we finally got settled in to our room at the Holiday Inn Express, we took the shuttle to the Inner Harbor to find something to eat for dinner. It is super cold in Baltimore so we didn’t spend much time out and about. We want our beach weather back!

Baltimore itself is really beautiful. I’m glad we get to experience a new city but sad to think it isn’t on our own terms. There are so many places we would love to explore but we know we likely won’t get a chance.

We did get to experience eating at Dick’s for the first time, though. Annadelle loved one of the servers who made her this hat.

I will continue to update on Annadelle’s progress over the next few weeks while we are in Baltimore. Please pray for us that we have a much better experience than what we have had today. We need some uplifting and love.

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.

January 3, 2019 New Year, New Annadelle

I have never been so ready for a year to come to an end. 2018 really wasn’t our year, that’s for sure. We aren’t focusing on what was, but what is yet to be… and that is a daggum great 2019.

We started the year off with a few rounds of physical and occupational therapy at USACW therapy services, over an hour drive from our home in Orange Beach. We are thankful for the opportunity to receive therapy every day, but the long drive is hard for us.

We have been trying to do as much therapy at home with her as possible. For Christmas she got the ginormous Barbie camper so we have been letting her ride that whenever the weather permits. It is helping her to use her left arm more by having to steer it and also her right leg when using the gas pedal.

Today was a great day of therapy for Annadelle. Miss Aly did some e-stim on Annadelle’s left arm and she tolerated it really well compared to what she did in Birmingham. I took some photos of where to place the “tickle stickers” so we can do some e-stim at home with a unit my mother gave us. She said she had one from when she had shoulder surgery, which is great for us since we have had such a hard time getting our doctor to prescribe us one. We were told they don’t like to prescribe them for home use because they want a trained professional to administer it. :::eyeroll:::

In PT, Miss Cameron said she believed Annadelle’s right quad and hip flexor muscles are firing. She said she also believed her left foot was firing, too, but she couldn’t be for sure about that one. She explained that there is something called an asynchronous contraction (although I may have that word wrong, who knows) where the muscle fires in conjunction with another muscle. In simple terms, the muscle fires with the help of another muscle at the same time. She said that can be possible with these types of demyelinating diseases- that the muscle returns as a asynchronous contraction, then you must work on isolating that muscle movement.

If her anterior tibialis (the muscle in her left foot) is not working, we are hoping that e-stim is going to help “wake up” the muscle. E-stim works by electronically stimulating the muscle. The idea is that the stimulation will trick the brain into making the connection and stimulating the muscle without the electrode. It can be painful depending on the setting and how much the muscle is firing on its own, if any.

The “tickle stickers” from the e-stim unit being used on Annadelle’s left arm

So, to recap, if Miss Cameron is right about these muscles firing, that means ALL of her muscles in her body are firing!!!!

Did you hear me? That’s an answered prayer, y’all. Matthew 21:22 tells us, “And if you believe, you will receive whatever you ask for in prayer.” Well, we have believed, and we have received!

We are still waiting for a confirmation on whether or not we will be going inpatient to KKI. KKI said they submitted a request for benefits to our insurance yesterday, but our BCBS case worker told us nothing has been received as of this afternoon. We are praying for BCBS to receive it and approve it by tomorrow because if we are going to make it to Baltimore on Monday, we have to leave Saturday around lunch.

We have reserved an AirBNB close to KKI from Sun-Wed since we have not heard whether or not a room at the Ronald McDonald house will be available. We know God will work all of this out so I am not stressing.

Dr. Maertens told us Annadelle needed to lose some weight, so we have placed her on a low carb diet. She hasn’t complained too much about it yet. Nicole came over today and made a comment that Annadelle looked like she had lost some weight, so it is obvious she is having some success. Maertens said losing weight would help her in therapy and make it easier for her to move.

Annadelle requested we take her to see Mary Poppins Returns this week, so we did. She never used to like going to the movies but now she does. She didn’t like sitting in the wheelchair accessible space provided and had us carry her up to a regular seat. She did pretty well. I am praying for a day when she no longer needs the wheelchair.

Other than that, I don’t have many updates. Please continue to pray and believe with us for a full recovery. As always, thank you for the continued support. We are forever grateful!