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.
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.
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.
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.