Monthly Archives: December 2018

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.

December 26, 2018 Post Christmas

Our first Christmas post-AFM has come and gone, and boy did we enjoy it.

Each year since her birth, Annadelle and I have taken a “mom and me in front of the tree” photo. It is something I look forward to every year to see how much she has grown, but can you believe I almost forgot this year? With all the craziness going on in our lives, I believe that is to be expected.

It’s hard for me to look at these photos and compare then to photos taken earlier this year. My baby girl is so different now. I’m always thinking of how things were and praying things return to close to what they once were. I wish so badly that she could walk or at least crawl in order to gain back some of her independence. I see comment after comment from parents whose children were in the same shape as Annadelle who are now walking, so I know there is hope. I just keep asking God when he will bless us the same way.

With that being said, I know things could be much worse. Annadelle is actually in a lot better condition than many children with AFM, so I don’t have much to complain about. I try to keep my complaints at a minimum as it is, but I’m human so they leak out periodically.

It took Annadelle forever to go to sleep on Christmas Eve so Chris and I were up very late getting her gifts ready. Santa got her a huge Barbie camper and a new Barbie mansion. It took Chris over 4 hours to put it all together, bless his heart.

It felt strange to us buying so many gifts, as we had tried not to do that in years passed. We had been focusing on gifting experiences rather than physical items as a part of our journey to minimalism. We downsized our home and had been in the process of going through and getting rid of many of our possessions when Annadelle got sick, but we somehow managed to come home from the hospital with more gifts than could fit into her room. That didn’t count her Christmas gifts, so the toys are now overflowing into the living room.

Chris and I decided that since Annadelle sleeps with us, we would just turn her bedroom into a playroom/gym. In the next week, we will be taking down her bedroom furniture and getting prepared to transform the room so that it will be accessible when we get home from KKI. I put together an Amazon wish list for Annadelle’s medical supplies and therapy equipment. I shared it with my Facebook friends in the hopes I could find many of the items used (and cheaper) and was surprised to receive a few packages on Christmas Eve from friends who had ordered the items straight from Amazon. One of the items was a tray that can be used in her car seat which is very helpful on long trips for anything that is difficult to hold in her lap.

Once Christmas morning came, Annadelle spent quite a while opening all of her gifts, not only because of the amount of items she received but also because we had her open most of the items unassisted. We had to continuously remind her to use her left hand and arm to help open the gifts.

Tomorrow we will travel to Mobile for Annadelle’s PT evaluation with USA Health. That is where we will be going for Annadelle’s PT and OT unless we are able to find a better place closer to home. Mobile is about an hour drive from our home, so traveling there each day isn’t ideal.

Annadelle’s neurologist in Mobile, Dr. Maertens, actually called me the other day to check on her progress. I told him we would be in Mobile on Thursday if he wanted to come by and see her during her PT evaluation. It meant a lot to me that he called to check on her, no matter if it was from intrigue or genuine care.

As far as Annadelle’s progress, we have noticed a significant improvement in her left arm since we have been home. She is able to do opposition on all of her fingers on the left hand, which is something she could not do when we left Birmingham. She wasn’t activating her quad in her right leg, either, but I am almost positive I saw her do it today in the bath. I even called Chris in to see if I was just wishful thinking, but he agreed with me that he thought he felt her engage it.

Every night I have been praying specifically for Annadelle’s complete healing. I place my hand on the affected areas of her body and pray for God to restore her completely. I have faith He will do it, but there are times I worry. I have to keep reminding myself that if I am faithful, He will provide. I just have to keep trusting and believing.

If you are reading this, can you do me a favor? Can you say a specific prayer for us tonight, that God restore her movement in all of her muscles, specifically her left foot and right leg? Can you also pray that He strengthen all the muscles that are currently working so that she can return to her normal self again? The God I know can do anything, as He is the ultimate physician. There is nothing He can’t do.

Thank you for the prayers and good thoughts, and also for the overwhelming support during this time in our lives. I wish I knew of a better way to express my sincere gratitude.

December 20, 2018 Shop with a Cop

Last night was actually our first night home from the hospital, but I was so exhausted from traveling and visiting with friends that I didn’t get a chance to update the blog before I fell asleep like I thought I would.

We left Children’s of Alabama around 1:00pm and drove straight home with only one brief stop to grab lunch. We were able to eat in the car instead of going inside which was helpful in lessening our drive time. Since Annadelle’s AFM diagnosis, we have found it difficult to travel because she gets uncomfortable easily. She will say, “My butt hurts,” rather frequently and it causes us to have to stop every hour. This time, however, she didn’t complain at all and was able to ride straight through to the house.

When we came over the toll bridge into Orange Beach, we looked for a welcome home message for Annadelle at the Wharf. Our sweet framily Nicole had told me to keep an eye out for it. Unfortunately we missed it because it was scrolling after we passed it, but Nicole’s husband Matt managed to get a photo of it on his drive home from work.

Nicole somehow also managed to get a welcome message placed on the board at the sports complex, too!

We ended up driving over again later to sit in front of the signs and wait for the messages to appear. Annadelle was so excited to see her name on the boards.

We grabbed some dinner with our friend Christina and her girls. They came down from Tennessee and are staying in our camper for a week for a Christmas vacation. They also traveled to Atmore to see Daniel (Christina’s husband) at Holman Prison for their yearly visit. For those that know me well, you may remember Daniel as the subject of my podcast, Skeptical, where I investigated a claim of wrongful conviction. I chronicled this investigation during this 10-episode series for Skeptical’s first season and have since been working to help exonerate Daniel after I discovered new evidence that he is, indeed, innocent of murdering his adoptive father.

I had not updated about this, but while I was in Birmingham, I met with an attorney and pleaded with him to help with Daniel’s case. I discussed the new evidence with him, and while he could not take the case due to his heavy workload, he did reach out to a few of his friends at the Equal Justice Initiative in Montgomery for some guidance. He seemed very interested in the bucket of new evidence I had been gathering with the help of a few friends, and in his email to his contacts at the EJI stated this was “an interesting case.” I have prayed every night that God lead me in ways to help Daniel. He has spent 22 years in prison for a crime I am certain he did not commit.

If you’re interested in listening to the first season of Skeptical, find us on Apple Podcasts, Google Play Music, or whoever podcasts are available. You can also find a direct link to listen here.

Today was a day that Annadelle has been looking to all week- Shop with a Cop! Officer Lowery, Annadelle’s school resource officer, had contacted me last week and asked if Annadelle would be interested in participating in the event sponsored by the Orange Beach Police Department. If I remember our conversation correctly, I think he had told me that each officer selected a child to participate and he had chosen Annadelle. Each child is given $100 to spend at Walmart while they shop with a cop!

We went to OBPD and met with Santa before hopping in Officer Lowery’s police vehicle and heading to Walmart.

While we were at Walmart, the kids were given cookies, drinks, and a shopping cart decorated with Christmas decorations. Officer Lowery and another officer took Annadelle around the toy section and let her pick out $100 worth of items she wanted.

Once we got home, she immediately wanted to play with all of the toys. I told her she could as long as she posed for a photo with all of her gifts.

We are so thankful for all of the support we have received so far. We have met some truly amazing people and met some sure-to-be-lifelong friends.

We are excited to have a few weeks home for the holidays. We have set up an initial evaluation for physical and occupational therapy at USACW’s outpatient therapy clinic next Friday. We don’t know what the PT and OT schedule will look like yet but we are hoping it is pretty intensive.

We are waiting for confirmation from KKI in Baltimore about an admission date. If we are approved for inpatient therapy, we will be going on January 7th. If we are not approved inpatient but receive approval for outpatient, we will go at the end of February.

Chris and I have decided to convert her bedroom into a therapy gym. We will be getting rid of the furniture and will be outfitting it with therapy aides and equipment. I have created an Amazon wish list with items we need. I am hoping to find better prices on used items in good condition rather than pay the Amazon price.

Please continue to keep my sweet girl in your prayers. We have a very, very long road ahead of us.

December 14, 2018 Home Again

I just realized that I have been pretty lax on updating the blog this week, so I apologize for that. I have good news to share!

This past week I spent my days at RMHC fighting off what I initially thought was allergies, but came to discover was likely a bad cold. Because of my symptoms, I stayed away from the hospital but got daily updates from Chris on her progress. My poor husband, he’s had to do almost all of the work this week.

He said today was an eventful day in therapy. The beginning of the week she kept the same schedule with OT at 10 and PT at 1, but today they combined the sessions into one and both therapists worked with her at the same time. They were able to put her in a contraption that allows her to suspend from the ceiling. Chris said she “walked” much better in it than she did the gait trainer. He also said the therapists had her stand in front of the desk that holds the computer game today. They have been doing this during the week, but today she was able to stand without assistance for 45 seconds. She was able to correct her posture with her knees buckling. This is big progress compared to what she could do standing last week!

We are back in Orange Beach for the weekend again. We will be meeting someone from Coastal Medical to get Annadelle’s new wheelchair that is being donated by them. I cried for hours after they told me about the donation. In my defense, I also poured out all of my anxieties on Nicole when talking about it so maybe it wasn’t just the donation. But still.

We will have three more days of therapy next week and they will finally release us to regular outpatient after Wednesday. We will be traveling to a clinic in Mobile for outpatient therapy. This particular clinic partners with CRS, so if we want help covering any medical equipment we have to use that clinic. We have decided to try it out and see how well she does there before trying to transfer her to a clinic in Orange Beach or Mobile.

Even though we are being released to regular outpatient therapy, we have still been approved for KKI. I spoke with KKI yesterday and if we decide to go inpatient we will admit on January 7th and will be there for 3-4 weeks. I asked about the possibility of going outpatient due to the fact the rooms are shared and only one parent can spend the night in the room. They can admit her outpatient but she was not sure when they would have an outpatient opening. She was suppose to call me today to let me know but I never heard from her. I will check with her again on Monday.

It doesn’t matter if we go inpatient or outpatient, we will still need a place to stay in Baltimore. If you happen to know of my housing close to KKI or Johns Hopkins Hospital, please let me know. I have a limited amount of time to find a place to stay if we do admit on January 7.

As far as our travel to Baltimore, we actually had someone offer to fly us there and back. I really can’t believe the generosity of total strangers and have definitely felt overly blessed.

Please continue to keep our baby girl in your prayers, as we are far from being out of the woods. Every day I pray and ask God that he give her full restoration and healing, and also to give me patience and understanding. I ask that you pray specifically that she show signs of improvement in her legs so that she may walk again and maybe get some independence back.

Annadelle helping me to fold towels and sheets in preparation for Christina and family visiting tomorrow

Poor old Ruby now gets mandatory rides with Annadelle in the wheelchair

Nicole got Annadelle some makeup and taught her how to put it on last week

Annadelle telling Chris to watch how well she can put on mascara

I haven’t been able to keep up with moving Annie being away from home, so my mom helped me out in order to surprise Annadelle tonight.

December 8, 2018 Orange Beach

Our first day of our 48-hour leave has been a welcomed change to our recent routine.

We left Birmingham yesterday around 3:45 pm but didn’t arrive in Orange Beach until almost 10:00 pm. We had to stop several times because Annadelle was uncomfortable and also to eat. We aren’t able to eat on the go anymore because Annadelle has trouble holding food in her lap in the car. She also has trouble reaching her arm up to her mouth comfortably. Now we know our long travel times will be much longer than what we are used to.

Once we got home, I discovered Chris had secretly been talking with Nicole planning something special for our arrival. She had gotten a key to our home and spent several days rearranging and decorating for Christmas, something I thought we would not be able to do since we were in Birmingham. I was so surprised to see how beautiful decorated our house was.

It amazed me how she had taken so much of my “junk” and arranged it to where it was so welcoming and inviting. She really has a knack for design.

See how she took some old closet doors and made this farmhouse-chic arrangement?

Or how about using our old cedar chest to make this festive scene?

She and her family had also put up our Christmas tree and adorned it with ornaments made by Annadelle’s classmates. She even brought Annie the Elf out and stuck her on the tree.

As I walked around our house, I stopped to look at the calendar I keep on our fridge. I would update it every day and let Annadelle place an X on each day as it passed. I cried as I saw how October 1 had not been crossed out because that was the day we went to the hospital in Mobile. There are even notes of how much medicine we had given Annadelle the night before, a reminder of the days I hold so much regret about. I constantly ask myself why we didn’t take her to Mobile earlier than we did, because maybe if we did she would not have been affected to the extent that she is. What if they had started steroids earlier? Would the outcome have been the same? It will be a question I will never forgive myself for, especially now as I watch her interact with other children her age and see how easily they can run and play. We have such a long road to go. This trip home has made me realize just how many limitations she has now.

Although I am sad to see how much our lives has changed, I realize we are so blessed to still have her with us. I know God has been very present during this whole ordeal and I trust that He will bring us through it.

Today was filled with fun as we rode over to the Flora Bama to meet Nicole and family and see Santa. The kids were able to do a few crafts and get their faces painted, and of course talk to Santa.

We also went to eat lunch together, then headed back to our house. We ate dinner with my mom who had prepared an awesome home cooked meal for us. Once we got back to the house, Nicole and family came by for a visit. They left after a few hours and now we are sitting here in our living room watching Netflix, something I treasure now. It really is the little things in life.

Tomorrow afternoon we will have to head back to Birmingham for another week of therapy. We have been approved until at least Friday, then doctors will re-evaluate and determine if another week of day treatment will be beneficial. I personally believe they will approve us until at least the 21st, then send us home due to the fact staffing will be limited during the week of Christmas. That would allow us to spend Christmas at home.

In January, we will be heading to KKI in Baltimore for inpatient treatment. I will update more about that as we know more.

Thank you for all of the continued support. I don’t know how to thank everyone properly so I hope if you’re reading, you know how sincere I am.

If you’re the praying type, please pray specifically that Annadelle be able to walk again.

December 7, 2018 A Glimpse of Home

Chris and I have decided to go home over the weekend for the first time in over 2 months. The Ronald McDonald house allows us to take a 48-hour leave without giving our room away so we wanted to take advantage of at least 2 nights at home in our own bed. I am not sure how well Annadelle will do on the 4 hour ride home, though. Her bottom starts to hurt if she sits in one place for an extended period of time. She isn’t able to adjust herself yet, but I have faith she will soon.

Our nights here at RMHC have been such a blessing. We almost forgot what life was like outside of the hospital.

We have taken the opportunity to work with Annadelle periodically throughout the day when she isn’t in therapy. I am trying to find ways to have her exercise without her realizing it. The photo above shows her on her belly, propped up on her arms. She could not do that just a few short weeks ago. She is now able to bear weight on her arms like this for a short period of time, something she used to do often while watching a movie or playing on her iPad.

In therapy yesterday, Annadelle was able to lay on the table and raise her right arm all the way over her head. She does well from the elbow down, but this was the first time she was able to use her upper arm muscles without assistance. Even OT Holly seemed impressed. I also got a video of Annadelle using her left arm a bit while laying down. I haven’t quite been able to figure out the best way to share videos on the blog yet. I think I will need to upload them to a platform like YouTube in order to share it publicly.

During our first full day out, we took Annadelle to see Santa Clause at the Riverchase Galleria for an annual Christmas photo. Santa choked up as he watched her roll up in her wheelchair. Annadelle wasn’t bothered by it at all. She is very resilient and is adjusting to our new life relatively well. We keep encouraging her to keep moving and assuring her that it’s faith her movement will come back. Using phrases like, “When you start walking again…” seems to keep her encouraged. We are keeping full faith that she will have a full recovery despite the odds. I know God can do amazing things for those who believe.

Also, I recently spoke to Dr. Ness about Annadelle’s rapid recovery to date. She has been studying AFM cases since 2014 and noted that of the patients diagnosed more recently, she has seen much quicker and better recoveries than patients diagnosed in years passed. I heard a news interview with a different doctor whose name I can’t remember and he said the same thing. He believed the virus believed to be causing AFM could have mutated over the last few years, hence the change in recoveries.

Speaking of the news, we have been contacted be several news outlets regarding Annadelle’s diagnosis. They asked us to speak to them about her battle with AFM and we agreed. We are hoping by getting her story out to the public, it will bring awareness to the need to determine the cause and the cure of AFM.

One of our first interviews was with ABC3340 in Birmingham. We drove over to the studio and were able to see where the “magic happens”. It was much smaller than we thought it would be.

Please pray for us as we travel home for the first time. It has been quite an adjustment and I know we have a long way to go.

December 4, 2018 A New Normal

After two long months living in a hospital room, we were finally able to bust up out of that joint. I don’t know the words to use to explain just how liberating that feels. Two months doesn’t seem that long compared to so many others who spend much longer under hospital care, so I’m learning to be thankful our stay wasn’t any longer than it was.

Our day started with visits from our care team explaining what the next few weeks may look like. Our insurance is basically approving us on a weekly basis (not by days, it’s by the number of sessions), so we know we will be in Birmingham until at least Friday, December 14th. I would not be surprised if they approved us for an additional week, putting us on regular outpatient discharge by December 21 due to the Christmas holidays and short staffing. I could be wrong, but if I had to make a guess, I’d say we are looking at being home for Christmas.

We had our final inpatient therapies today that were cut a little short due to Stevie the service dog coming in to see Annadelle. I know she is my child because she loves animals (especially dogs) as much as I do. I miss my fur babies so much. Dutch is currently being boarded at the vet so I know he will be overly excited to see us. We miss him and Ruby and Roxie terribly!

After therapy we left the hospital and got settled in at RMHC. Everything is very nice here. Check out how nice this family area is!

We are so thankful that we were able to get a room here, saving us a TON of money.

After we settled in, we made our first outing to Target. I expected the trip to go well because of the introduction of Caroline’s Carts at Target stores a few years ago. These carts are made specifically for kids and adults with special needs. Unfortunately, Annadelle was not able to support herself in the seat and kept sliding down so it was painful for her. To make matters worse, this Target is the only one I have been to that did not have a family restroom. Annadelle had soiled her diaper so I had to change her by bringing the cart into the handicapped stall, leaving the door open because the cart would not fit completely in the stall. Her pants were wet also, so I had to completely remove her shoes, pants, and diaper. I cleaned her, put her new diaper and pants on, then her shoes, then got her back in the cart comfortably. A Target employee was in the restroom and noticed me struggling and offered to help. She held the cart for me as I put her back inside.

I wanted to cry during the entire ordeal as I realized just how difficult being out and about would be with her in this condition. Over the last few days, Annadelle has gotten to where she can lock her right knee in and help support herself standing up, but she leans forward a lot and has trouble supporting her core at the same time. This makes it very difficult to help her use the bathroom, especially in a public place that is not equipped to help a handicapped individual. I am struggling to accept that this is our new normal.

We are now sitting in an actual bed with our sweet girl in between us snoring. She was so excited to be able to sleep with us again, and I’d be lying if I said I wasn’t excited, too.

We are even more excited about being able to go home briefly this weekend. RMHC allows us to take a 48 hour leave once every 7 days, so since we will not have therapy on Saturday or Sunday, we will travel back to Orange Beach for the first time in 63 days. We have already messaged Nicole and Matt about hanging out a bit and attending the Santa Drop at the Flora Bama.

Because we have tomorrow off from therapy, we are going to take Annadelle to the mall to see Santa. We are hoping to be able to do a few things we would normally do at Christmas time in order to disguise the fact that this Christmas is so different for her.

Friends, I hope you all know just how grateful we are for your support over the past couple of months. It is humbling to know there are so many people that care for us and our sweet girl. I ask that you continue to send up many prayers for our princess as we adjust to life with limited mobility, although we are confident she will make a full recovery. When we spoke to Dr. Ness this morning, she made a comment that many AFM patients being diagnosed now are making much better recovery than those diagnosed in years prior. She and her team were amazed to see how much stronger Annadelle was in her short time at Children’s inpatient.

I would also make a special prayer request for our new friend Kinley who was diagnosed with AFM in 2014. We were able to meet her mother, Kim, this week and talk about AFM a bit. Kinley has been making slow progress over the last few years, but I know the power of prayer can achieve so much more. Please add her to your prayer list, as well.

Thank you again! I will update more tomorrow. Be blessed.