Category Archives: Kennedy Krieger Institute

February 6, 2019 Saying Goodbye to Kennedy Krieger

After four months of living out of hospitals, we are finally saying goodbye to inpatient life. We bid farewell to our therapists and the staff of KKI after a long day of therapy in a mostly-empty gym.

Our long-time roomies, Frances, Mike, and Matthew left a day before we did, but even one night without them felt so lonely and awkward. We have grown to know and love them as our own family, so the separation got us both. Chris drove them to the airport and when he got back, he told me Frances cried the whole way there. I don’t either of our families expected the rush of sadness we would feel by separating, especially since we were able to connect on such a deep level. It’s a special bond we share because of our kids’ diagnosis. We truly know how the other feels without ever having to say it, just like many of the AFM parents. We’re a club. Unfortunately, none of us wanted to join.

Saying our final goodbyes to the Parks
Matthew and Annadelle during their last night together in Room 302

I’m not sure if I had updated the blog after Laura and Francisco left, but if I didn’t, they left on the 2nd. We were so sad to see them leave, but Francisco was overjoyed. We loved seeing the smile on his face as he made his way to the elevator. We will forever cherish the relationships we established at KKI and look forward to seeing Francisco and family whenever we head out to New Mexico.

Friends forever

The day before the Parks hopped a flight to St. Louis, we all took a TLOA and went over to Elicott City to eat hot pot, a type of Chinese cuisine Frances had told us about. It was an amazing experience! If you’re never heard of hot pot, try it out. You’ll love it.

We also went through Elicott City’s main street downtown and walked around to a few of the shops. We explored the B. & O. Railroad museum which is apparently the oldest train station in the U.S.

Of course, we snapped a few pics for the blog.

Mike, Matthew and Frances

The last two days in the gym felt very lonely. We were one of the only families in the gym as Annadelle finished up her last sessions, but the therapists and techs especially tried to make up for the emptiness. One of the techs, Nadine, played a pretty long game of hide and seek with Annadelle while she was in the stander. Normally she complains after being in the stander for about 20 minutes, but when Nadine distracted her with the hide and seek, she was in the stander over an hour without complaining. Our PT recommended a stander for home use and has sent the prescription to our local medical supply dealer, Jeff with Coastal Medical. Once we get home, we will need to speak to him about the stander and a titanium wheelchair with power assist.

We are now at our hotel for one last night before heading into D.C. tomorrow. Dr. Moore’s office said they would let us know tomorrow whether or not they could fit us in for a consult before heading back to Alabama, so we’re going to spend the weekend in D.C. while we wait word from Dr. Moore’s office. If for some reason they cannot see us early next week, we will head home to Alabama.

Please continue to pray for our sweet girl in the upcoming months. We have a lot of work to do and are continuing to keep faith that Annadelle will be completely restored. I felt that we had taken a step back since her therapists did not feel like she has enough strength to continue with inpatient therapy, but Chris has reminded me that what we ask for in prayer, we will receive.

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 22, 2019 Rolling Along

I have been all up in my feelings the last few days.

I am trying my hardest to remain steadfast in my faith and believe that my baby girl will heal completely, but I’m human. I can’t help but ask questions when I am unsure of the answer. I keep reminding myself that what we ask for in prayer, God will give us.

I wish I could say Annadelle’s lack of movement was my only worry, but I’ve also been stressing about our hospital stay. We have had some problems with miscommunication between the nursing staff which caused me to become very irritated. Pile that on top of the stress of having to find lodging and I’m a big mess. Thursday we will have to leave the Children’s House and find a hotel to stay in so Chris is going to make reservations at the Holiday Inn Express assuming they have a room available. It is one of the few hotels nearby that offers a free shuttle to KKI.

Over the weekend, we joined our roommates for a trip out to the movies and dinner at Bonefish Grill. We took the kids to see Aquaman at a theater a short drive away that offered reclining seats and trays. It was so nice to sit back and relax for a bit and focus on something other than hospital life. Bonefish was nice, too, because we were able to just enjoy a nice dinner with our new AFM family. We are so glad we met Frances, Mike, Matthew, Laura, and Francisco. We are going to make sure and send them some snail mail when we get home to a Orange Beach.

I posted on Annadelle’s Facebook page that she had not done well in therapy over the weekend. She had a great day on Friday and actually took some steps on her own with her left leg after Miss Courtney gave her some AFO’s. I took a video of her walking and have watched it approximately 835873847576847878734755 times since then. But for some reason she seems to have lost motivation after Friday. I am wondering if it is because Chris and I both attend therapy with her. She seems to work better when I am not in the room so I am debating on whether or not to attend sessions with her anymore. This is a hard decision because if I don’t attend the sessions, I won’t be able to know what to do with her when we get home as far as home-based therapy goes. I am praying that we see a quick improvement in her mood so that she can progress with her walking and standing.

Today we also spoke with Dr. Bellzburg, a neurosurgeon from Johns Hopkins Hospital, regarding nerve transfer surgery for Annadelle. We had already contacted Dr. Amy Moore in St. Louis about the surgery, but one of the nurse practitioners at JHH told me about Dr. Bellzburg. She said he had experience with transfers in the lower extremities, but he did not seem very confident about it to me. He suggested we get 2-3 other opinions which made me feel like he was telling us to go elsewhere, that he wasn’t interested in the surgery. We aren’t even sure if nerve transfer is the route we want to take, but we at least wanted to talk about the pros and cons. I think we were both left feeling like we didn’t get much information.

Sometime this week Dr. Pardo is going to come and speak to us about Annadelle’s diagnosis. He is a pediatric neurologist who has seen many AFM cases and works out of Johns Hopkins. He received her imaging from her two MRIs today so I am very interested to see what he says about her lesions.

I don’t have very much else to update about. It seems like every day is the same here, just rolling along. I am really just feeling like I need a shoulder to cry on for some reason. Not really to vent about anything, but maybe just a hug.

Thank you to everyone for sharing our story and especially our GoFundMe account. Being in Baltimore is a lot more expensive than we anticipated. The link to our GFM is below.

Also thank you for all of the prayers and support. Please continue to pray fervently for our sweet girl so that she may walk again. I will update more in a few days.

January 17, 2019 Movie Night

Annadelle is fast asleep after a long, productive day of therapy and the all-anticipated movie night with her roomies. Bless her heart. She was so tired that she didn’t even make it through the first sentence of bedtime prayers.

I didn’t have a chance to update last night because it was so late when I got back to the room. Wednesday was busy, too, even into the dinner hour, so by the time I made it to the room I crashed.

The first part of the day yesterday was more therapy as usual. Annadelle used a large robotic arm in OT that helped to evaluate what all she could do with her upper arms. I left feeling disappointed because I thought she was doing a lot more with her upper arms than what she is, but it is actually her shoulder that is doing most of the work. Her biceps and triceps are still extremely weak on both arms.

After therapy, she was treated to a trip to the aquarium with two of her friends from KKI. The recreational therapy department here is really awesome and it is obvious that they really care about the kids. Annadelle’s favorite part of the trip was seeing the dolphins and jellies.

After the aquarium trip, we took Annadelle to the playroom with her friends and went on a parent trip to Target. We only had a limited amount of time to get everything we needed and get back to the shuttle so it felt a lot like the supermarket sweep gameshow I watched as a kid. We were exhausted by the time we made it back to the shuttle but we had fun. It felt like normalcy again even if for a brief second. I got my boo bear some lights to hang in her room similar to what Francisco and Matthew have, and of course we got her a blind bag. She was so excited to see her surprise when we got back.

Today’s activities didn’t last as long, but it was still a busy day. We have been trying to fit in schooling sessions between therapies. Sometimes she is all for it but other times not so much. She is very behind in school since we have been in the hospital so long and I am trying my best to catch her up. I don’t want her to get back to school and feel like an outcast since she isn’t reading like the other kids. We are still working on learning all of her letters and sounds, recognizing her numbers and learning her sight words. I have been printing out letter sheets and working on writing them with her, circling pictures of items that start with certain letters, etc. The photo pictured above is her playing Go Fish with number cards in an attempt to learn all of her numbers. I haven’t done much with the ten frames but hope to be able to go back to the store to get a few more supplies to be able to work on that here in her room.

Therapy today, especially the afternoon therapies, went very well. Miss Courtney out Annadelle on the adaptable tricycle and let her work her legs. We were blown away by how well she did considering when they put her on it during our stay in Birmingham, she wasn’t able to use any of her legs to peddle. She still needed a tad bit of help from Courtney, but overall she moved the tricycle on her own.

OT was a bit more difficult when Miss Lisa had her use the arm bike. Her muscles seemed to tire out very quickly and she began to cry a few times, but we encouraged her to push through it. She is such a trooper when it comes to pain and manages it very well. At the end of the session, Annadelle got to ring the bell in the gym showing that she completed a new or difficult task. That is two days in a row that she has gotten to ring the bell so she was very excited about that.

We haven’t received our schedules for tomorrow yet. They normally bring them in pretty late. I may not update tomorrow depending on how busy our schedule is.

As usual, thank you for all of the support, encouragement, and prayers for our sweet girl.

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.

January 14, 2018 Back to the Grind Monday

After a lazy but fun-filled Sunday, Annadelle was back to work this morning. She had a very packed schedule beginning at 9:00a, which included a lot of difficult tasks.

During our morning OT session, Annadelle worked on raising her right arm and elevating it just above the mat. She has great motion of her right arm from the elbow down, but her upper arm is still weak. She is not able to lift her arm over her head if she is in a sitting position, but she can do it if she is laying down. Her OT believes it is because her core muscles are still very weak. Hopefully that will improve in the upcoming weeks.

Annadelle practicing elevating her arm just above the mat

Not only are we working on her core strength, but we are also keeping Annadelle on a somewhat strict diet in order to help her lose the 10 pounds she has gained since being in the hospital. I originally thought her round face was something referred to as “moon face,” a side effect of prolonged or high-volume steroid use. Because her steroids were discontinued at the end of December, we are thinking her puffy face is just from the weight gain. She was once very active so now that she is not able to move much, keeping her weight under control has been an issue. Hopefully losing 10 pounds will also help to improve her core strength that is lacking. When we arrived at KKI, she weighed 26.8 kg. A few days later she was up to 27.1 kg. Today she weighed 27.1 kg again which could be an improvement considering she had just gotten out of the pool and had also just eaten prior to being weighed.

Overlooking Baltimore

Today we also met with someone from behavioral psychology named Andrew who is trying to help Annadelle practice a few ways to cope with pain. Today’s lesson was on breathing through pain, but trying it during therapy did not help. Her pain has mostly been under control since the introduction of Gabapentin, but occasionally she will complain of pain behind her knees, in her hips, or above her heels. Believe it or not, there are times when I pray for her to have some pain because we have noticed that when she does, movement comes back. I have heard other parents of kids with AFM say the same thing.

Annadelle complained of pain today when standing in the contraption pictured above. It is similar to the stander used in Birmingham, but this one has wheels and allows her to move around. She tolerated the one in Birmingham much better than this one which tells us it is really working her legs. Our PT is hoping to get us one of these ordered for home use which would be great. She has already reached out to the vendor who provided us with a foldable wheelchair in Orange Beach. Because Annadelle isn’t able to navigate the chair we have on her own, we are going to submit an order to our insurance to hopefully cover the more lightweight titanium chair like the loaner chair she is using here in Baltimore. She has been practicing with it this week and is able to move herself around the room and the hallway without assistance. She still needs a bit more practice, but the difference between her first day using it and today is absolutely amazing.

Annadelle and one of her roomies, Francisco, working hard together in therapy

Tonight Annadelle was able to experience her first massage therapy. Once she saw it scheduled for her last night, she has not stopped talking about it. The first thing she said to me when she woke up this morning was, “I am so excited for my massage!” She tolerated it very well (obviously, right?). The therapist told our roomie about something called foot reflexology. It is an alternative medicine that involves applying pressure to the feet and hands with specific techniques to target certain organ structures in the body. The therapist suggested our roomie look up a foot reflexology chart to see what areas would best help to reconnect communication where our kids needed it the most, in our case the spine.

We have also been looking in to other alternative forms of medicine such as essential oils and vitamins, specifically things that help to repair the immune system. For example, research shows that large amounts of vitamin c can help to repair damaged myelin in demyelinating diseases such as transverse myelitis. Several parents in our AFM group have noticed more movement after their children had been given high doses of vitamin c. I have also heard good things about helichrysum essential oil, but we have not tried that yet. I will update more at a later date with a list of vitamins and oils we have tried.

Tomorrow Annadelle will get her first acupuncture therapy. I’m sure she won’t be excited about it, but I’m interested to see how much it helps.

At this point, I am willing to try anything to get Annadelle walking again.

Our PT has out in an order for a Swiss stem for us to use at home. She said they heard a rumor that Valmed, one of the only suppliers of Swiss stem, will be closing soon and asked if we wanted to go ahead and order a unit. Typically Swiss stem is not covered by insurance so our out of pocket cost is a whopping $420.00. The company is located in Switzerland so it may take a bit to get the unit. I asked what the difference was between a Swiss unit and a twin unit. Our therapist said a Swiss unit penetrates deeper into the muscle, whereas a twin unit does not go as deep. The twin unit is usually tolerated better so many therapists may start with a twin and work up to a Swiss unit. Annadelle has tolerated the Swiss stem very well, only crying once during her first therapy session. She no longer has severe anxiety over someone saying, “tickle stickers.” Our therapist also said that of the kids she has seen with AFM (which is a lot), they typically see the use of a muscle return quicker when using the Swiss stem rather than the twin.

Annadelle and her roomie Matthew watching Pete the Cat

After lunch Annadelle was able to get in the hydrotherapy pool again. This time we used the smaller pool that can be used as a water treadmill. The entire floor of the pool moves which was super cool to watch.

The therapist worked with Annadelle to walk on the treadmill. I watched the entire time in awe of her strength and determination. You could see how much she loved being in the water, wanting to move and swim about like she used to. Once we get home, we plan to utilize the community pool a lot since our outpatient therapy center does not have a pool.

Since arriving at KKI, we have seen Annadelle using her right hip flexor in the pool. It is slow progress but it is any progress so I will take it!

Thank you for continuing to donate to and share or GoFundMe campaign. I don’t know what we would have done had it not been for our friend Nicole creating the campaign for us. It has helped us to pay our bills and travel expenses, especially food while we are in the hospital, and for needed items for Annadelle including the Swiss stem unit I mentioned earlier. We have found that because of Annadelle’s extremely rare diagnosis, we will have to fight for many needed items and therapy. Our insurance company does not even have a billing code for AFM so many items are listed and billed under transverse myelitis, a condition that is often denied many needed therapy items.

As usual, I ask for many prayers for my baby girl.

January 13, 2019 Snow Day

I woke up this morning, peeked out the window and discovered several inches of snow on the ground outside of our room at the Children’s House. I let out a sigh as I wobbled my way to the bathroom to turn on the shower, dreading the morning ahead solely because of the short walk to the hospital in wet, slushy snow.

Snow in Baltimore is just about identical to snow in Alabama except the residents here seem to handle it pretty well (i.e. everyone didn’t panic and rush to the nearest Walmart for bread and milk). By the time I made it outside, city workers had already cleared the roads and sidewalks pretty well.

I made my way to the hospital, through a few elevators and the long tunnel over to Kennedy, and found Chris and Annadelle still in their pj’s. She had eaten breakfast but was otherwise not ready for the day to begin. Her and one of her roomies, Matthew, sat together and watched their iPads for a bit before we started to get her ready to leave.

Chris and I dressed her, brushed her hair and teeth, and bundled her up for her first TLOA (temporary leave of absence). We had originally planned to go to Target and do some much needed shopping, but the large amount of snowfall kept us from doing that. I am hoping we are able to go within the next few days. Even with a car here, navigating around Baltimore isn’t easy.

Instead of going to Target, we decided to get a little change of scenery and spend the day at the Children’s House. I thought Annadelle may want to hang out in the room, but she chose to spend almost the entire day on the lower level in the play room.

It was so nice to be able to utilize the free food in the house kitchen, leftovers from last night. We spend a ton of money on food in the hospital and have been trying to keep costs down by ordering a parent tray for each of us. Even then, it is $6.00 a tray, $12 per meal.

A few days ago we met with the entire care team to discuss the plan of action. We were told then our expected discharge date is February 7, although that Can change depending on the progress she makes in therapy. We know we will at least be here through the 7th so we have been trying to come up with some meal ideas I can make out the house and bring over to the hospital in to-go containers (hence the reason I need to go to Target!). If you have any ideas of easy meals for this kind of situation, I’m all ears.

The schedule for tomorrow is pretty busy with therapy beginning at 9:00am and ending at 6:30pm with a massage. Annadelle said she is “so excited” about the massage. We also have a consult request for acupuncture so we will see how that goes.

Annadelle will also have school tomorrow in the education classroom for 30 minutes. I have been trying my best to work with her on her sight words, letters, and number recognition. I feel like we are so far behind but am praying I can get her caught up before the beginning of the next school year. In Alabama, kids are not required to go to kindergarten so she won’t actually have to repeat it. We would like her to be able to go into first grade with her classmates. I know we will need to get an IEP set up for her but, honestly, I have no idea where to start on that. It will be on the top of my list when we get home.

Please continue to pray for complete healing for our sweet girl. It is so hard for me to think about her being immobile like this for the rest of her life. I pray for the day she can walk again and be her independent, sassy self. I know all things come in God’s time, I just wish he would provide me a peace of mind in the meantime.

Thank you for your support. It is truly appreciated.