Category Archives: Kennedy Krieger Institute

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.

January 12, 2019 One Week In the Books

We have finally come to the end of our first week of therapy at KKI. Tomorrow (Sunday) will be Annadelle’s first day off from any therapy. She is overjoyed to be able to do whatever she wants for the day, especially considering there is a large amount of snow expected to fall overnight.

Chris and I were able to get a room at the Believe in Tomorrow Children’s House, but it is only until the 24th. For some reason they are kicking us out so that they can accommodate another family that is scheduled to come in. I was confused when they were explaining it to me because I’m wondering why they aren’t being put on a waiting list like us. We have been on a waiting list since December. Oh well. I’m grateful for the room, just stressed about finding somewhere else to stay come the 24th. My mind has been consumed with worry about finding another room somewhere in Baltimore.

Our room at Believe in Tomorrow

The entrance to the house

The past few days in therapy have been very productive. Annadelle is working hard for many hours throughout the day. She very rarely complains about having to do the work or the estim which is a blessing. We were worried she would tire out quickly and start to whine, but we have been amazed at her attitude and determination to get through it. I believe her being around many other kids affected with AFM is helping tremendously because she sees how well they are doing and wants to be equal to them.

Annadelle in the gym walking in the harness

I love seeing all the kiddos making progress (because they all have, for sure), but one kiddo in particular is really helping to give me hope for Annadelle’s full recovery. I spoke with his mom today and we shared stories about our kids’ onset and determined Annadelle’s story was very similar to her child’s. They were diagnosed just a few days apart, affected almost identically, and received similar treatments. The only difference now is that her child is trached, 3 years older, and male. But he is walking! He still needs a bit of assistance but he is kicking butt in the gym. The first day he walked I cried like a baby and he isn’t even my kid, I just know the joy his mom felt watching her son do something she wasn’t sure he would ever do again. I pray for the day Annadelle is able to walk, too. I am keeping faith that that day is coming, hopefully very soon.

I know I continue to talk about the connection between all the AFM parents here at KKI, but it feels so amazing to have such a support system between parents. We all cheer on each other’s kiddos like they are our own. We celebrate victories and cry over setbacks together. We have so many shoulders to lean on. But the best thing is seeing our kiddos feed off the other kiddos. It’s almost like they infect each other with hope and motivation, much like the parents.

Tonight we got the kids together for a movie night in our room and invited another family in to watch. Our room is known by the staff as the “party room” so it is not uncommon for other kiddos to come in and hang out. It gives us a sense of normalcy.

Annadelle and her roommates practicing standing using knee immobilizers

Tomorrow we may receive up to 7 inches of snow here in Baltimore. I am dreading it but of course Annadelle is super excited. We have a TLOA (temporary leave of absence) we can take tomorrow and I was hoping to be able to go to Target to pick up a few things we need, but the snow may prohibit us from doing so.

The view from our room window tonight

Thank you for all of the continued prayers and support. I will continue to update about our journey at KKI. We are praying she makes big strides here!

January 9, 2019 Midweek

Annadelle has a very busy schedule today. Her itinerary included 5 hours of PT or OT and a bit more recreational therapy. It was no surprise to me when she fell asleep immediately after her bedtime prayers.

She had a lot of fun in OT today while working on her fine motor skills and learning to navigate her wheelchair. They are teaching her to make big pushes with both arms but she has difficulty because she isn’t able to let go with her left hand and hold her arm up. She is doing a lot better than she was before we came because they were able to get her a loaner wheelchair that is much lighter. We are hoping we will be able to get a wheelchair like that for when we go home.

It seems we may have met a major milestone today in PT which is extra special considering we have only been in therapy for 2 days. Before we arrived, Annadelle was not engaging her right hip flexor (that we knew of). Miss Cameron said she believed it was activating with the help of other muscles, but we weren’t 100% sure. Today it became very obvious when we observed her walking in a device I call the vector, but I doubt that is the name of it.

I don’t really know how to describe the feeling we have being here. On one hand, it really sucks that we even have to be in this situation to begin with, but we are also so grateful to be around other families who have been dealing with this for as long as we have. Today I watched another AFM kiddo stand on his own and walk with minimal assistance. I sat there and cried and I watched his family looking at him because I know the joy they were experiencing at that moment. It is strange to say that I am just as happy for them as I am for Annadelle, but it’s true. Yeah, there’s that twang if jealousy when we see others doing better than Annadelle, I will admit it. But on the same token, it is encouragement because we have faith she will get there, too. It is really amazing to see how all of the families come together and support each other. Being able to talk about your struggles with others going through the same thing has been like having our own therapy, something we didn’t realize we needed until now.

The biggest complaint I have about KKI is the fact that only one parent can stay in the room overnight. It is so hard to leave at night and wonder how she did while you were gone. Yeah, it is good to have some respite, but knowing one of us has to leave for the night is hard on us all. We still haven’t heard back from RMHC or the Children’s House which has become another added stress. There are simply too many families in need of a place to stay and not enough rooms available. I am going to call tomorrow to check the status of the waiting lists, although I doubt I will get very far.

Update on the AIRBNB, I had to fight the host but I was able to get a refund for the room. A rep from AIRBNB called me to talk about what had happened and explained to me that because the room was advertised as accessible, I was entitled to a refund. The rep said he is working with the host to get the listing updated but I won’t receive my money back for 15 days.

Speaking of money, it is extremely expensive to eat here. I can’t remember if I had included that in the last post, but yesterday at the cafeteria for lunch I got a piece of chicken, asparagus, and cabbage. Chris got a bowl of vegetarian chili and cabbage. Our total was $29 without drinks! It is ridiculous! We have just been drinking water to save money and it is still outrageous. Hopefully we can get into a common house soon so I can try to make us some food that we can store in the floor fridge and save us some money.

Please say a prayer for my sweet girl tonight that we see some major progress while we are at KKI. And of course please pray for a full recovery. There are no limits when it comes to God.

January 8, 2019 First Impressions of KKI

Our first two days at KKI haven’t been overly eventful, but so far we are having a great time.

We discovered our room is actually a 3-patient room rather than a regular 2-patient shared room and we actually sort of knew our roommates, or at least one of them. Frances and Mike, whose son Matthew was affected around the same time Annadelle was, had been my friends on Facebook after we met through the AFM parent group. We had been keeping up with Matthew and his progress online and I had taken some time to message Frances every now again, so I felt like we already knew all of them. I had declared them family even though we had never met. We were stoked to find out they would be one of our roomies. Our other roomies, Laura and her son Francisco, were also familiar to me from the parent group. We all get along very nicely and it is so wonderful to be able to talk to other parents who have been dealing with the same thing we have. It also seems to help Annadelle to be around other kids with AFM who have the same or similar limitations as she does.

Our first day actually kind of felt like a waste because all we did was hang out in the room and meet the teams of specialists who will be working with us. Annadelle discovered that she doesn’t really like the food here which makes picking meals for her pretty difficult. The cafeteria food is outrageously expensive (even more so than the other two hospitals we have been at) so buying a whole other meal is not an option for us at this point. We are going to do a little bit of grocery shopping and come up with some snack items that Annadelle will eat and pray for the best. We are having to watch what she eats due to her weight gain, making this even more difficult.

Before bed on our first night, the staff gave us a schedule for the next day which was very helpful. It listed all of the activities she would be doing that day, with who, and what time for each. Our therapy began at 9:00am but the doctors were doing rounds beginning a little before 7:30. By some miracle I had myself and Annadelle ready around 8:30 before Chris arrived.

Only one parent is allowed to stay in the room overnight so Chris and I are taking turns staying with her. She wanted me to stay with her the first night. Chris took the hotel shuttle back to the room for the night and took it again this morning. We have still not been able to get a room at RMHC of Baltimore or the Children’s House (Johns Hopkins’ version of RMHC) so we are having to stay in a hotel for now. We were blessed that a close friend of Chris donated some of his hotel points and booked us a room until the 16th. We are praying we are able to get in to another room before then. We would prefer the Children’s House because it is closer. We have been told by numerous employees not to walk around outside at night. This area is apparently very sketch and we have been warned not to walk around holding a cell phone. The Children’s House is only across the street and can be accessed by tunnel which is the big reason for wanting to get a room there. Otherwise I would be terrified to have to walk a few blocks over to RMHC.

As far as therapy goes, the gym is A LOT smaller than I had anticipated. The gym in Birmingham was much bigger but only had room for 3-4 patients. The gym at KKI is smaller but has a lot of equipment and is very noisy with the large number of patients there. I don’t really see it as a disadvantage, though, because the kids really help to support each other. The therapists also make sure to keep the kids on task by distracting them from the pain (or other distractions).

I was so glad that our PT and OT immediately began doing estim on Annadelle. I had been told by other patients that KKI utilizes estim a lot which is something we have been asking about since Annadelle’s AFM diagnosis. It seems other rehabs are very hesitant to use it, but through my conversation with the therapists today, they have good success with it. They also use Swiss stem, which I guess is different from regular estim because it penetrates deeper into the muscle. It was used on Annadelle a lot today. She tolerated it well until it was used on her upper legs. She cried a lot at that point, but she just tucked her head in, squeezed my hand, and pushed through it without having to have much motivation. She knows what has to be done to get her walking again.

For the afternoon session, I had to spend the entire PT appointment time meeting with the social worker, Rose. Rose was super nice and spent a lot of time getting to know our situation. It almost felt like I was sitting in on my own therapy session, as she listened to me and offered a lot of emotional support. It was a relief to be able to spill my feelings even if just for a minute.

Unfortunately I missed Annadelle walking on the treadmill because of my meeting with Rose. Chris said very little about how she did (something he always does). He is a man of few words at times and it is hard to pull information out of him, but our roomies told me she did awesome. I wish I could have been there to see it.

Our therapists also got us a different, light weight wheelchair to use while we are here. It has a back support and is easier to reach the wheels so Annadelle is able to move herself around a lot better. It is even purple (her favorite color) and has light up wheels. They are going to reach out to Coastal Medical to see if we can get one ordered for her. Hopefully we can because Annadelle will actually use both of her arms to push the wheelchair. Her roomies are able to move around with their wheelchairs which helps to motivate Annadelle to do it, too.

We will have a consult sometime this week to discuss acupuncture and massage therapy for Annadelle. We have heard that acupuncture can help patients with AFM and at this point we are willing to try almost anything.

Not many updates besides that, so I’m heading to bed. We have another busy day of therapy planned tomorrow.

Thank you for all of the support. Our journey is far from over. Please continue to say a prayer for complete healing for our baby girl.