I was productive today, a welcomed change from my recent habits. I didn’t spend the entire day in my pajamas sitting in the recliner drinking hot tea, but instead spent most of the day unpacking.
Of course this unpacking involves a lot of moving boxes from the “unpack” pile to the “donate” pile. I have a carload of stuff ready to go to the thrift store already and at least 8 large boxes still waiting to be unpacked. Our new home is much smaller than our old so we are slowly adjusting. In the meantime, my house looks like a disaster.
However, that didn’t keep me from agreeing to allow a rep from Hill-Rom to come and show us how to use the airway clearance vest Dr. Lovlie had ordered for us. I simply followed our introduction with, “Don’t mind our home. We live here!”
The rep showed us the vent system and provided Annadelle with a vest large enough to fit her. Dr. Lovlie had ordered the wrap, but the rep said the vests work much better so she brought both. It’s a child medium so she still has another inch to grow before she needs a vest the next size up. The rep said she would go ahead and order the next size and have it sent to us and to call her if we had any questions.
We are to use the vest twice a day for at least 20 minutes a session, even if Annadelle is not sick. The vest vibrates rapidly and allows the secretions in her lungs to be knocked loose and thinned out, hopefully preventing her from another bout with pneumonia and keeping her out of the hospital. I didn’t realize she would have to use it twice a day, but we will just have to add that in with our new schedule.
Our new schedule includes a lot of supplements, a few hours of therapy, and now the vest. We try to make the activities fun for her but she is growing bored with some of the activities we do. We tried to switch it up last night and have “movie night” which is something she loved while we were in Baltimore. She said, “Mommy, can we have movie night with popcorn?” We put her in her new recliner we got her from Wayfair before we went to Baltimore and covered her legs with a blanket. I wish I would have gotten a photo of her laid back in that recliner snacking loudly on popcorn. She was in heaven.
After the rep from Hill-Rom left, we headed back to A Better Way in Foley to get on the BEMER mat. We had been doing some research into the BEMER since we talked to Dr. Kelley the last time we went to A Better Way and found a plethora of positive information on improved circulation and general bloodflow.
Chris laid on the mat first for a total of 16 minutes, which is actually two sessions. You simply lay on the mat until the timer goes off. You don’t feel anything, but I did notice I felt warm after my session. Annadelle was excited to be on it at first but quickly became bored when she realized she would just be laying on a bed. She started to move around a lot so we had to keep telling her to try to be still, something easier said than done for a 5 year old.
Annadelle will be getting on the BEMER mat each day as long as Dr. Kelley permits. She is interested to see what kind of improvements in mobility Annadelle makes. The idea is that the mat will help to increase bloodflow, improve oxygenation of her blood and allow the body to heal itself at a much more rapid pace than it would without the BEMER.
Dr. Kelley wants me to make sure and keep up with what she can and can’t do right now, then what she can and can’t do after using the BEMER. Today (before BEMER) we noticed Annadelle can easily lift her left arm up over her head while she is in the tub. This is a drastic improvement from a few weeks ago when she was only able to use her bicep. Now she is actually pushing up in the water (but unable to in full gravity). She isn’t able to push her left leg down but she can lift it up very well.
She still has no movement in her left foot besides the two toes that we already know she can use. She can’t lift her foot up or “gas pedal” down. She can push down on her right leg very well but can’t lift it up well at all. If she could push down on her left leg, I think she could “walk” much easier so I have been praying for that OR for her right quad to “wake up”. One or the other would make the walking much better.
Her core seems to be getting stronger. She is still not able to sit up on her own from a flat position and she isn’t strong enough to transfer herself, but we are hoping for continued improvement.
Today we ordered the Healer Tech FlexrGo!, a wearable EMG device that was recommended in the AFM parent group. According to Healer Tech’s website, the FlexrGo! is “a wearable, surface EMG which provides clinical grade movement readings for biofeedback, neuromuscular re-education, and power-strength output.” What this means is that we should be able to place a “sticky” on one of Annadelle’s muscles and the device would show us a reading of how much she is using that muscle on a compatible device, like an iPad.
We wanted to go ahead and order the FlexrGo! so that when it comes time to speak with Dr. Moore about a nerve transfer again, we can have a better idea of what muscles are making improvements and which muscles may need a bit of help from a nerve transfer. I am very excited to be able to see what this device can do for us.
I also got a call from Kim at NuMotion about Annadelle’s wheelchair. We are trying to get her a lightweight titanium wheelchair with Power Assist, a device that connects to the back of her wheelchair and helps her to go long distances without wearing out her arms. The Power Assist works by giving the chair a “boost” and the Power Assist then turns on and propels the chair for her. It will be vital for her to have this device when she returns to school. We will have to meet for a “seating clinic” when we go to Thomas Hospital Rehab on Wednesday along with her new therapist. We were told that once insurance approves the chair (IF they do) then we should expect the chair in about 2 weeks, a much shorter time frame than what I anticipated. She really needs her new chair in order to give her some more independence around the house and out in public. I also need to order her some wheelchair gloves.
I forgot to post that Chris and I decided to obtain the services of a special education advocate. The advocate works with us to make sure Annadelle is accommodated for at the school. They work with us and the school to ensure a smooth transition and to make sure Annadelle is awarded what she is entitled to by law, such as a desk to fit her, a transportation vehicle for school events, etc. It is a bit costly, but well worth the investment to us considering this is our “new norm” and we want to make sure Annadelle receives what she deserves as far as school goes.
Again, I am asking what I have now dubbed Annadelle’s Army to continue to pray fervently that she be able to walk. I’d like to grow her army by using social media hashtags to include #annadelleyeah (her hashtag created by our friends Matt and Nicole) and also #annadellesarmy. If you don’t mind, could you share our posts to help build her army? The more people that see our posts, the more people that can be praying for our sweet girl. If there’s anything we know for sure it’s that prayer works.
Thank you for your continued support. We are mighty blessed.
If you would like to help with Annadelle’s rising medical equipment costs, please consider donating to our GoFundMe account.