Tag Archives: USA Children’s and Women’s 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.

March 6, 2019 0 for 2

We had a hectic morning as we rushed out the door headed for Thomas Hospital, the rehab facility where Annadelle is now doing her physical therapy. Today was her first day there so of course we had another evaluation. Our time seemed to fly by so we only had a little bit to meet one of our PTs, Lisa.

Long story short, we were able to set up a daily PT schedule with them to include Friday pool days. I know Annadelle will be so excited about that. Unfortunately the only opening they had for OT was at 7:15 am daily, so we won’t be stating OT there yet. We have been put on a waiting list for a later time. I need to call USA tomorrow to st up her OT in the meantime.

I also need to remember to call the orthotist to see if he received any more info about getting her a SPIO vest. We were originally told we would be fitted for it through our PT but that didn’t seem to make much sense. Why even go through an orthotist if your PT would order it? Chad at Eastern Shore Orthotics was suppose to be checking on it but I haven’t heard back from him, so I’ll make a follow up call tomorrow.

That seems to be the norm now. I have to make a lot of follow up calls regarding equipment or appointments because it is so hard to get someone to call me back. I feel like I spend a lot of time playing phone tag. Meanwhile, she doesn’t have the equipment she needs. I know other parents hav been having the same issue.

Later on in the day, we drove to Mobile to see Dr. Sindel, a pulmonologist that we were referred to after our last hospital visit at USA Children’s and Women’s. Initially we were not impressed with him, but after a few minutes of talking to us he opened up. We explained AFM, as we always do to new doctors. It seems at times that we know more than they do about it.

Dr. Sindel talked to us for a bit about the comparison of polio to AFM. As it turns out, during his residency, his attending was the last doctor in the US to diagnose a case of polio. He said because of that he had always been intrigued with it, and he also has a family member who had polio. He said his relative still has residual problems but has lead a normal life. She is able to walk after having a tendon transfer.

Annadelle went through a breathing test and had an X-ray done. Dr. Sindel told us that if he wasn’t aware that Annadelle had AFM, her test results and clinical presentation would be that of a normal child. Basically, he did not note any deficits in her breathing.

He also told us that, looking at Annadelle’s X-ray that was done less than 2 weeks ago, she did not have pneumonia. Yes, you read that right. When Annadelle was back in the hospital less than 2 weeks ago, she did not have pneumonia- she had a collapsed lung.

Y’all. I was furious. Although I am no expert at reading xrays, I always ask to see them when Annadelle has one. When she was admitted at USACWH back in October, she had an X-ray daily, including when she developed pneumonia. The PICU doctors went over these xrays with us extensively and I was learning a little bit about what to look for, such as cloudiness or an unclear view of her diaphragm.

When she was admitted this past month, I looked at the X-ray they took upon admission and told Chris I thought it looked pretty normal. I told him I didn’t notice any cloudiness but I did see a line in her right middle lobe. It was very noticeable. When the ER doctor came in to inform us she had bacterial pneumonia, I was very surprised. I questioned her about the X-ray and asked her to pull it up and show us again. Over and over we were assured it was bacterial pneumonia, so she was started on IV antibiotics.

Every single day we were in the hospital, I asked for an additional X-ray. I was denied every time because “she has had too many xrays.” And yeah, I get it. We don’t want to expose her to unnecessary radiation. I know that. But once Dr. Estrada told me he didn’t believe her to have bacterial pneumonia and that his opinion differed from the attending, I questioned it even more.

Basically I say all this because I am mad at myself for not advocating harder for her. I knew something was not right with the X-ray and I should have insisted on another one. When I learned today that she had been put through an unnecessary IV (twice!) and we spent a week in the hospital for nothing, I felt so guilty for putting her through that again. Dr. Sindel told us that had she had another X-ray, it would likely have shown rapid improvement, as a collapsed lung normally heals itself quickly within a day or so.

If you take anything from my post, I want you to remember to always trust your instinct. You know your child better than anyone else, no matter how many medical degrees they may have. Before Annadelle was hospitalized for the first time in October, I listened to people I trusted who told me I was just being paranoid, a hypochondriac, that I was worrying for nothing. Over and over I had the same conversation with numerous friends and family members, some of which even have medical degrees. I should have listened to my instinct because if I would have, she may not have been affected to the extent that she was.

Anyway, I’m salty about our recent hospital trip, but not as bad as I probably should be. I’m thankful she is better and I would rather have been safe than sorry. I just hate that we subjected her to more and more pain when it wasn’t necessary.

For now I’m just praying. And praying. And praying some more. Praying for patience, comfort, guidance, but most of all healing. I am working hard to focus on God’s promise that what we ask for in prayer we will receive. I remind Him of that every time I pray.

Would you mind praying, too? Annadelle’s Army has been hard at work. I just ask that you don’t forget about our sweet girl. Her journey to health is far from over, and we need the support now more than ever.

Thanks for everything. I truly mean it.

February 19, 2019 Back In the Hospital

Two days ago, Annadelle had not run a fever all day. I breathed a sigh of relief that it was a sign Annadelle was recovering from human metapneumovirus. We went on about our day as usual, doing a little bit of e-stim therapy on her arms and quads, and she was so tired that she fell asleep a bit early after we placed her on her belly on the couch.

I picked her up and took her to bed around midnight. Because she had been laying on her belly for so long, I put her on her back in the bed. I noticed her chest was retracting, so I grabbed our pulse oximeter I had ordered off Amazon a while back and placed it on her finger. Her oxygen was reading at 87! I thought surely it was a mistake because other than the retraction, she did not appear to be having trouble breathing. I turned her on her side and took it again, and this time it went up to 91. Obviously that is still low so I called Chris in the bedroom to look at her. We monitored her for a little bit and decided to call our new pediatrician’s after-hours care and left a message with the nurse practitioner on call, Leigh. Leigh called me back shortly and I told her Annadelle’s oxygen as going between 87 and 93. She said that because of Annadelle’s AFM, she thought it would be best for us to go on to the hospital. She said she didn’t want to tell me not to go and risk something serious happening.

Annadelle sleeping on the couch with Ruby and Roxie

 We packed an overnight bag and got Annadelle ready to go. We left for Mobile about 2:15am. The hospital is an hour drive from our house. Once we got to the ER, Annadelle’s oxygen was hovering around 92.

Even though we have spent several months here at this hospital, we had to explain to the doctors all about her condition. This is something that is really difficult for us because we have had to tell our story over and over again for months. I thought SURELY since we had been at this hospital before, they could pull up her history and see what had happened, but that wasn’t the case. 

We stayed in the ER for a while while we waited on XRAY and labs to run. Her labs didn’t show anything special except an elevated white blood cell count that would be expected with human metapneumovirus, which we had already told them she had. Her XRAY revealed what appeared to be pneumonia, so we were admitted to the hospital.

The attending believed that she had bacterial pneumonia and recommended that we start IV antibiotics. She wanted to start her on Fortaz, a very strong antibiotic. They did the first round of Fortaz, then they consulted Dr. Estrada, the infectious disease doctor we had seen back in October. Dr. Estrada did not believe her pneumonia to be bacterial, but he said he didn’t want to stop antibiotics all together in the event he was wrong, so they switched her to Ampicillin. She is continuing Ampicillin every 6 hours.

Dr. Estrada was blown away at the progress Annadelle had made since we last saw him. We really like him because he is straight forward, explains things in a way we understand, and had it not been for him voluntarily contacting the CDC with a suspected case of AFM, we never would have received the AFM diagnosis. Annadelle’s case was the first “official” case confirmed by the CDC in Alabama, although we know of at least one other case that happened in Alabama years prior that STILL hasn’t been confirmed by the CDC. 

Anyway, Dr. Estrada said he was very happy to see how much she had progressed and how proud he was of us for doing everything we had done since October to aide in her recovery. 

I also had a conversation with him about the testing done by the CDC back in October on our first admission, and asked him if she had tested positive for coxsackievirus. I thought I had remembered him telling me that she had, but I couldn’t find it on any of her medical records. He said yes, she had tested positive for coxsackievirus according to the report and phone call he received from the CDC.

This was interesting because our old roomie, Matthew Park, had also tested positive for coxsackievirus. I hear a lot about enterovirus D68 and 71 being linked to AFM, but Matthew’s case was the only other one I had heard being linked to coxsackievirus. I sent Frances, Matthew’s mom, a message to tell her about my conversation with Dr. Estrada and she told me something I wasn’t aware of regarding coxsackievirus.

It looks like there may be an important difference between coxsackievirus type A and type B. There was a medical study that did research on mice with paralysis resulting from coxsackievirus. It showed the paralysis in the mice wth type A was because of myositis (inflammation) as compared to the mice with type B that was caused by neuronal death. I thought this was a good indicator of what recovery might be like depending on which type of coxsackie virus she had, so we asked Dr. Estrada if it was possible to find out. Long story short, we have to contact the Alabama Department of Pubic Health in Montgomery and pray they typed it at the time the sample was sent to them. The only report Dr. Estrada received from them just showed she did NOT test positive for enterovirus d68 or 71, which are two of the viruses widely believed to cause AFM. However, because coxsackievirus is an enterovirus, the report just shows she was positive for an enterovirus. Surely the CDC typed it, seeing as to how there is not much research on what causes AFM. I would assume they would want this information for research to hopefully find a cure. We shall see.

Annadelle’s oxygen levels today have been pretty stable. Spencer (RT) lowered her to 1 liter of 02 last night as she slept and said she did very well. She had been on 1 liter throughout the entire day, but tonight’s RT (Keondra) turned it down a bit more to 1/2 a liter after her last breathing treatment. Hopefully we will continue to see this trend of lowering her oxygen and we will be able to go home within a few days.

Our new room at RMHC of Mobile

In the meantime, we were able to get a room at the Ronald McDonald House of Mobile. Can I just say how much we love them????! We plan on volunteering to make dinners for the house families once Annadelle is stable enough to not have to be in the hospital all the time. The employees there, specifically Tamara, are wonderful and have been very accommodating. We have stayed at another RMHC house and the Believe in Tomorrow House in Baltimore and I can say the RMHC house here in Mobile is by far the best one. Some of their accommodations are not as up to date as other facilities, but the warmth and compassion of their employees makes up for anything the facility is lacking. If you are ever able to support a charity, I would ask that you support RMHC of Mobile in honor of Annadelle. You can help by purchasing items from their wish list (both PDF forms and Amazon wish list) in order to help the numerous families staying there, including us. Just click the link to view the needed items.

Speaking of charities we love, tonight I ordered us a bag of whole bean Peruvian coffee from our friends over at Called Coffee. Some of our friends, Jarod and Hannah Snider, have been living in Peru as missionaries and have helped to create Called Coffee in order to help some of the villagers there. If you are a coffee lover like me, grab you a bag of coffee from their new website at www.calledcoffee.org

We have also been working on getting the items Annadelle will need to complete her home gym so that we can continue additional therapies at home (in addition to outpatient therapy). We have an Amazon Wish List that a few of our friends have purchased from (thank you!!! <3), but we still have a lot of needed items. We have decided to purchase two large items now- an Amtryke adaptive tricycle and the Healer Tech FlexrGo!

Annadelle was able to use an adaptive tricycle while we were at KKI and did very well with it. I actually posted a video to my personal Facebook page of her using the tricycle. She was able to move the tricycle on her own with her legs, which was a huge milestone seeing as to how she could not do that while we were in Birmingham. I looked into purchasing the tricycle to see that it has a price tag of almost $1,200! However, AMBUC offers tricycles to patients that are placed on the wish list, but it can take up to two years to receive one. The website encouraged us to reach out to our local AMBUC chapter, which we saw is in Mobile. I sent them an email with the video I referred to a moment ago and explained our situation and Annadelle’s diagnosis. I am praying they are willing to provide us with a tricycle at a free or significantly reduced cost. We are also willing to try to fundraise for the tricycle.

The other item is the Healer Tech FlexrGo! that we learned about through our new friend, Christa. I talked a little bit about meeting Christa and her son, Sebastian, at KKI in an earlier post I made. Christa has recently purchased one for Sebastian and said it has helped him to isolate some of his movements. The reason we are interested in purchasing one is because it works as a home EMG which we believe can show us how much improvement Annadelle is making in her movements. You use the FlexrGo! with an iPad and it shows the levels of the muscle movements. It is really an awesome gadget which we are praying will be helpful for us to be more confident in whether or not we will pursue a nerve transfer with Dr. Moore in 2 months. This device is rather costly, too, (+$400), but we think it is a good investment.

I know this has been a long post, but I wanted to make sure and include all of the information we have learned about these new gadgets and options for AFM patients. If you know of someone who could benefit from the information in our blog, please pass it along. That is why we created this blog, after all.

As usual, please keep our baby girl in your prayers. And thank you for the endless support.

January 28, 2019 Old (and New) Friends

I think we are finally starting to get into the groove of things at KKI. It seems like each day is the same thing over and over, which can get really boring but we know it is helping. We’ve said time and again that we’d stay in Baltimore as long as we had to in order to get Annadelle the best care available, no matter the sacrifice.

We are definitely seeing improvement in Annadelle’s mobility, especially in her left hand and arm. Her OT, Miss Lisa, made a splint to use on Annadelle’s right arm to keep her from using it. Because it is so much stronger, she resorts to using her right hand instead of focusing on helping the left one. Almost immediately after putting on the split, Annadelle has been improving on the weaker arm. There still isn’t a ton of movement from her upper arm on either side so we have decided to consult a surgeon regarding a nerve transfer.

The surgeon we chose is Dr. Amy Moore out of St. Louis. We had heard nothing but good things about her and have seen several articles featuring her, especially on AFM cases. I contacted her office through email and sent a long list of attachments with Annadelle’s medical records and necessary information. We are now waiting to hear back from Dr. Moore about a possible in-person consultation. I have heard others say she did a telephone consult, but I’m not sure if that is an option for us.

Because Annadelle’s left foot isn’t doing much as this stage, we are pretty sure we will go ahead with a nerve transfer on that foot if possible. We are still on the fence about any nerve transfers on her upper extremities and have still been praying fervently about a decision. We don’t have a long window of opportunity seeing as to how we are now 4 months post-onset. In order to have the highest likelihood of success, surgery needs to be done no later than 9 months post-onset. Some transfers have been done up to a year post-onset, but outcomes are not as successful.

Speaking of successful outcomes, we were able to speak to Dr. Pardo from Johns Hopkins Hospital today. He is a pediatric neurologist and I believe he is the head of neurology at JHH. I have heard a lot of good things about him and his knowledge of AFM. I know he has been studying AFM for many years and has followed over 40 patients throughout that time, assessing initial clinical presentations and monitoring outcomes over time. I had been very interested to talk to him about Annadelle’s MRI since the only information we received about it was from the team at USACW in Mobile when she had been diagnosed with Transverse Myelitis instead of AFM.

Dr. Pardo and another doctor, Dr. Murphy, sat down with us and spoke about Annadelle’s initial symptoms and visits to care facilities. We had been to 3 facilities before arriving at USACW in Mobile. Since being there, we have been at 2 other facilities. Needless to say, we have received a lot of differing information regarding Annadelle’s diagnosis so hearing about AFM from someone who has been studying it for years was refreshing.

Dr. Pardo also showed us Annadelle’s MRIs and explained what exactly we were looking at. He said compared to many other patients with AFM, he believed she is a “moderate” case. He said he would consider it mild by looking at the lesions on the MRIs but says “moderate” due to the fact that she was affected from the neck down. Basically, he said her injuries could have been far worse.

I asked him if Annadelle had had any white matter involvement (i.e. injury to her spinal cord in the white matter, not the grey matter) because we were told she ONLY had white matter involvement by Dr. Merritt at USACW. As it turns out, she only has grey matter involvement, making her case a classic case of AFM. Had she had white matter involvement, she would have experienced loss of sensation which she has not. Grey matter involvement affects movement, making paralysis “noodle-like” and flaccid.

He also said something that shocked me, and that is that he believed based on her MRIs and her clinical presentation that she would make a full recovery. He did not say those exact words but he definitely alluded to it several times. He said, “I think she will be back to her normal self, but it will take some time.” I thought I was being delusional when I heard him say that so I asked him several times if he meant a significant or full recovery to which he said, “Yes.” It surprised me because I did not expect any doctor to make a statement as bold as that, but he said based on the patients he has seen over the years that it is very likely.

Obviously Chris and I have been on Cloud 9 since our conversation with Dr. Pardo. We have been believing for full restoration, but it gave me some relief to hear it from a neurologist. Yeah, he could be full of crap, but I’m just going to enjoy the high while it lasts (so, please, don’t pop my bubble).

Therapy at KKI is continuing as usual. Annadelle was able to swim in the pool with Miss Brooke today which she loves. She did well walking on the pool treadmill and seemed to be in very good spirits. We have been able to keep her motivated with the introduction of a “bribe box”. It’s a plastic bin full of small toys individually wrapped with wrapping paper. If she does well in therapy for the day, she gets to choose a bribe from the box. So far she has opened toys like the tiny polly pocket, Disney princess figurines, and a Kuboka box. Target had a lot of small toys on clearance so I was able to snag toys for as low as $0.99-$3.99. Hey, whatever works.

Over the weekend we were able to take advantage of another TLOA with the Park family and my long lost friend Whitney. I had not seen Whitney since the 6th grade when we lived in Huntsville. Whitney eventually relocated to a town right outside of Baltimore and had been following Annadelle’s story on Facebook and the blog. When she learned I was in Baltimore, she messaged me for a meetup. It was awesome to be able to spend the day with her and her family, as well as the Parks, and have some fun at the Maryland Science Center. There were a lot of interactive exhibits that Annadelle couldn’t access easily in a wheelchair, but she still had a lot of fun.

After the museum, we went with the Parks to a vietnamese restaurant called The Red Boat. Frances and Mike introduced me to my very first bowl of pho, which I had been pronouncing as “foe” when it is actually pronounced “fuh”. That’s not as bad as when I pronounced the word acai as “aye-kye” so there’s that. (It’s pronounced “ah-sah-ee” if you are wondering. #themoreyouknow)

While at the restaurant, we heard an incredible story from the store’s owner. I am going to paste what Mike Park wrote about the experience from Matthew’s blog since he explains it so well:

“After dropping off Fran’s mom at the airport we went to eat Pho. Even though everything came in a disposable bowl, it was very good, definitely have to go back one more time before we leave. We spoke to the owner a little bit about Matthew and Annadelle. It started with the usual where are y’all from and we explained our reason. He wished us well and we went about our business. As we were leaving, he told us a personal story of his own life.

He was one of 8 children growing up extremely poor in Vietnam. When he was an infant, he got an unknown viral infection and was completely paralyzed on his right side. He said the entire village was hit and many children were paralyzed or hit with neurological impairment. His parents were too poor to take him to the doctor or give him any medicine. Somehow, and in my belief by the grace of God, this man was able to recover. He had no neurological damage and the only reminder he had from that is his right foot is smaller than his left. Other than that, no pain or numbness. We all discussed it as we drove home. We were blown away. If that were not enough, there was a woman in the parent Lounge at KKI that told Neeli about someone she knew in her home country that also had paralysis and recovered. No such thing as coincidence.”

So many stories of recovery all in the span of just a few days. I honestly felt like God was speaking to me through these encounters, as crazy as it may sound. I’m okay with crazy. Crazy gives me hope, something I’ve been clinging to for the past 4 months.

Something everyone needs.

January 15, 2018 Uncertainty

We had another busy day of therapies today, including acupuncture. Annadelle was much more cooperative today than she was yesterday. I think she may not have slept very well the night before and that may have contributed to her unwillingness to complete tasks assigned by her therapists toward the end of the day.

Today she was able to stay on task for the most part. She’s five, so of course she is easily distracted, but she does a lot better than I would imagine a lot of kids her age would.

Nothing remarkable happened in therapy unless you count our OT telling us that Annadelle’s right shoulder is extremely weak. Initially she thought it could be her core muscles that were keeping her from lifting her arm, but she asked another therapist to watch her and give her opinion. That therapist said Annadelle was definitely having difficulty with her shoulder, meaning we have to continue to work to increase strength in that arm. Our roomies suggested we ask for a consult from the brachial plexus injury clinic at Johns Hopkins so they can “score” her. I don’t really know what that means but I am going to ask about it tomorrow morning in rounds.

I have been speaking with our therapists about the best equipment to keep at home for home therapy so our PT provided us with a list of recommended items. Everything on the list is something that is used at KKI and can be used for sessions at home, something that will definitely help us since our outpatient clinic is over an hour away from where we live. Because of the cost and time of travel, we may have to consider cutting her outpatient therapies down to only a few days a week instead of every day like we had been doing, I had called Encore physical therapy on Canal Road in Orange Beach inquiring about transferring there, but the therapist cut me short and told me I needed to find a “developmental rehab” which I have been told is completely inaccurate. The therapist claimed she was very familiar with AFM, but I think she was confusing AFM with a different disorder. Anyway, hence the reason we are working so hard to have our own home gym.

The Amazon wish list can be found by clicking in the menu of this blog, then click “medical wish list”. I would share the link here, but for some reason the links do not transfer to the site when I am updating a post from my iPad.

Dr. Pardo, a pediatric neurologist at Johns Hopkins, is going to come and visit Annadelle on Thursday. He has treated and followed many AFM patients so I am curious to see what he says. His team has been hounding me about getting Annadelle’s MRI scans to him, but I wasn’t able to easily get them sent from USA Children’s and Women’s Hospital in Mobile where we were treated originally. Eventually his team was able to get them sent over.

Annadelle was scheduled to have her first school session today, but the teacher had written down the appointment time wrong so it began about half an hour late. I was not happy with the session because I clearly explained to the teacher what Annadelle needed to work on. Instead of doing what I asked, the teacher began to teach her about Martin Luther King, Jr. and asked her to read a small book about him. Like, she can’t read, so…not sure what she was thinking there. She was trying to get her to read words like “brotherhood” and “equality.” I eventually interrupted her and explained again that Annadelle could not read yet, that she only had a month of school prior to AFM and it had been hard for us to fit in much school time between medical care and therapies. The teacher then started rushing through the lesson and didn’t give Annadelle a chance to respond when she asked her questions. I ended up asking the nurse to take off education from our schedule which prompted her to call the supervisor. I wasn’t trying to cause trouble by any means, but I didn’t want to pack her schedule full with more stuff that wasn’t beneficial to her. I can do more with her on my own (which I have been doing as I get the chance), like having her practice letter sheets, writing her name, learning her sight words, and counting. I brought some school supplies with us to KKI so we are working with her as we get breaks. It isn’t much right now, but at least it is something. I think we will be able to catch her up before the end of the summer, God willing.

The stickies are placed on each leg above the knee. They are hard to see in this photo, but they are there.

Acupuncture therapy went about as well as I expected it to. Jeff, the acupuncturist, was great with her. He explained that we would be placing the “stickies” (we don’t use the word “needle”) on her spine because that is where the injury is. She doesn’t have complaints of pain much, otherwise he would place the stickies at the site of the pain. But because it was her first session, he didn’t want to begin on her back and instead placed one sticky on each leg. She jumped a little bit at the first one and started to cry, not because of pain but because of anticipation that it was going to hurt. She dried her tears quickly and let Jeff put another sticky on the other leg. She still jumped a little but laughed about it. He kept the stickies in for about 10 minutes before he removed them. He asked if he could come back on Saturday to put some more stickies on and she agreed, so I’d say it was successful even if the stickies weren’t placed here it would be more beneficial.

My boo bear is now snoozing soundly with her doll she made in therapy. I am so thankful to be able to kiss her goodnight, something I was terrified I would never be able to do again.

Thank you for all of the continued support. Without the love and encouragement of friends and family, I don’t know how well we would have coped over the last few months. Your support means more than you know.

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.