Tag Archives: Fundraisers

March 3, 2019 BEMER Technology

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.

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.