Monthly Archives: February 2019

February 27, 2019 Grief

There’s a small oak tree visible from my bedroom window. The leaves are wilted and brown from the cool winter weather; acorns scatter the ground beneath the tree.

When we first moved to Orange Beach, I would lay in bed each morning and stare up at the beauty of this tree, watching as its limbs waived in the warm gulf breeze. Chris had not yet moved yet so it was just Annadelle and I sleeping in the same bed, snuggling with a few eskimo kisses before getting up to prepare for school.

This morning as I woke up and stared at that tree, a tear faded down my cheek and onto my pillow. I looked over at Annadelle, still asleep in our bed and snoozing like it wasn’t already 8:30am. Chris had gotten up early to go to Lowe’s so once again it was just me and Annadelle. When she woke up, she asked me, “Can you turn me over?”

And that is the difference from a memory I never knew would be so significant.

We’ve been out of the hospital for a few days now. We were finally released last Saturday as Annadelle’s SATs went back up (and stayed up) to her normal level. We came home on antibiotics that she is still taking for another day.

Since we left the hospital, we haven’t done much at all. Chris has spent the last few days tearing down a part of our fence to repair it, as months of overgrowth took over and ruined an already fragile fence. Annadelle and I have spent most of each day watching TV, taking a very small amount of time to do therapy. She fights me when it comes time to do it and whines a lot.

To be frank with you, I’m engulfed in emotion, so much so that my desire to do much of anything has faded away like the tear from my pillow. I say “I’m overwhelmed” because I don’t know how else to say I am drowning in worry, uncertainty, and hopelessness. It feels like our lives have stopped while everyone else has moved on, like we’re on a treadmill while our friends are walking on a path. I don’t know if Annadelle will ever walk again. The not knowing is killing me inside, ripping away what tiny amount of joy I have.

And of course I feel guilty about that. I should have joy, right? Of course I should. I should have joy in Christ, joy in knowing Annadelle is here with me, joy in hope for the future. But to be honest, the joy is overshadowed by the burden and responsibility I now have, and I’m terrified I will let her down.

Tonight my friend Frances called me. Frances’ son, Matthew, also has AFM. We spent a lot of time together as roommates in Baltimore and I can honestly say I consider her family now. She has probably seen or heard me cry more than any of my other friends I have ever had and she’s pretty good at making me feel better.

I explained to her that now that we’re home, the reality of how life is now is setting in. I am exhausted from doing every little thing to keep Annadelle occupied or working on therapy or eating or bathing or literally anything. Frances knows exactly how I feel, as she is having to do the same with Matthew.

We talked at length about how we feel dealing with AFM. It was such a relief to know she feels as lonely as I do, despite us both being surrounded by friends and family. When we first went in the hospital, my phone was blowing up with people checking on us or sending us well wishes. I don’t guess I appreciated that as much as I should have at the time because of how unstable Annadelle was. I was preoccupied with every single aspect of her care that I didn’t take the time to really listen to many people calling or messaging. Now that it has stopped, I wish I would have waited to open the letters or texts. I know that sounds strange, but it feels like everyone else’s lives have gone back to normal as we are here still dealing with trauma that seems never-ending.

I know this post seems like a big ol’ pity party, and in essence it really is. I am trying to be painfully honest so that when I’m passed this feeling I can look back and laugh at the worries I have now. Talking to Frances made me realize I wasn’t the only person feeling like this. She helped me to realize how far Annadelle has come and how far she will go with continued work. Frances basically gave me a slap across the face and told me to get my ass back in gear, something I didn’t even know I needed.

Anyway, would you pray for us? I would ask that you pray specifically that we see improvements in Annadelle’s legs so that she may walk. I would give anything for her to walk again.

Thanks for everything, and I promise my next post to be more uplifting.

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.

February 16, 2019 Human WHATAvirus?

My house continues to be a special contamination zone as Annadelle and Chris fight off what is apparently human metapneumovirus (hMPV). Dr. Lovlie called tonight to let us know Annadelle’s nasal swab results had come back and revealed she had hMPV. Basically, she has a bad cold.

BUT, because her immune system is so WHACKED from AFM, it is making it difficult for her to fight it off. I’m attempting to help her by doing chest percussion and encouraging her to drink plenty of fluids including water and orange juice.

Although she has been sick, Annadelle has been in great spirits. She has been playing with her toys and asking me to move her from the couch to her chair, then to her mat, then to another chair, then to her room, then to the bathroom…it is never ending. I think that is really the hardest part of being a mom of a child with AFM is that they are always wanting to move around and do the things they once did, only they can’t. I am praying for the day when Annadelle can walk.

Today she asked to walk from the kitchen table to the door to our home in order to let Ruby and Roxie outside. I held her as she walked and noticed her moving her legs in a stepping motion is getting much better. The problem is that she can’t bear weight easily so she can’t stand up on her own. I think if there was some way we could rig up a pulley system around the house and put her in a harness, she could move herself around. It’s the weight bearing part she has a problem with. I hope that gets better when we get a stander.

I have the prescription for the stander but have to get with Jeff at Coastal Medical about getting it. I texted him today about getting Annadelle’s new wheelchair and he wrote me back and told me he would get with me the first of the week. I honestly don’t ever know what day it is so I had forgotten today was Saturday. I also completely forgot about Valentine’s Day, so there’s that.

Annadelle felt good enough this afternoon for us to do a little bit of e-stim on her arms. I took the booklet given to us by KKI that shows us where to apply the electrodes and just picked a random exercise to do. She tolerated it well, as she normally does, at about 25%. We are attempting to slowly work our way up on the percentage, but I didn’t want to try that today with her being sick.

Once she gets well, the plan is to continue outpatient therapy at USA Children’s and Women’s. I don’t like having to drive an hour for therapy, then an hour back, but I haven’t been able to find anyone locally that is willing to take on her case since she can’t transfer herself yet or walk.

Please continue to pray hard for our baby girl whose journey is only beginning. If you could pray specifically that she is able to walk and overcome this bad cold, I would appreciate it.

February 15, 2019 Dr. Lovlie

Over the past few days, Annadelle has been fighting her first infection since her AFM acute phase. It is a sickness I have been terrified of for four months now.

We were able to see our new pediatrician today for the first time, although it wasn’t under the circumstances I had originally planned for. I had scheduled a wellness check for her after her birthday next month, but whatever respiratory illness she has changed out plans.

Annadelle’s new pediatrician is Dr. Lovlie, someone who was recommended to me by my friend Nicole. She also had several good reviews on a Google so I decided to give her a chance. She was drastically different than our former pediatrician, but I liked her no-nonsense approach. I could tell from the way she spoke about Annadelle that she had done some research on AFM, something I was appreciative of after months of having to explain myself over and over to numerous doctors.

Dr. Lovlie informed me that bronchitis could not be determined from an X-ray like I was lead to believe at the urgent care office we took Annadelle to yesterday. She said what was more likely was that she was showing inflammation of her bronchial tubes because she had read such in the radiology report from the urgent care, and that could indicate a slew of respiratory infections besides bronchitis. She took a nasal swab from Annadelle and told us she would send it off to see exactly what bug she had, but it would probably be Monday before she got any results.

She teetered back and forth as to whether or not she would start Annadelle on an antibiotic in the event what she had was bacterial. I told her that because of Annadelle’s medical history, I would be more comfortable if she would go ahead and start her on it and she agreed. So, Annadelle started Azithromycin today and will continue it until Dr. Lovlie tells me otherwise.

Once we got home, Annadelle continued to run high fevers throughout most of the day. I am praying these fevers go away quickly. The last time I could not get her fever under control, we ended up with AFM. I’m sure you can understand why this is so terrifying for me. I’m so ready to live a somewhat normal life instead of being around doctors 24/7.

I think I may have forgot to mention in a few of my recent posts that Annadelle is now completely off the Gabapentin. We requested to wean her off of it while we were at KKI, it realizing she was on the highest dose possible (6ml 3x’s a day). While we were weaning the medicine, we noticed a significant change in Annadelle’s mood. She was much more sensitive and cried at the drop of a hat. She also had several night terrors that appeared to be very vivid based on her reaction. We spoke to the doctors at KKI about this but they assured me it was not a side effect. However, I have spoken to other parents who said their child experienced similar symptoms when going on or weaning off Gabapentin. A few of the parents in the parent group have discussed creating an AFM wiki of sorts, and if they do I hope they include information about Gabapentin seeing as to how many AFM kiddos are on it.

Now that she is off Gabapentin, she is only taking vitamins and supplements. We have also started using helichrysum oil on her daily. We had done some research on it while at KKI and learned it is a popular oil used for increased circulation and possible nerve regeneration. We have also ordered lion’s mane but have not received it yet. Lion’s mane is believed to aide in the regrowth of myelin, which is what was damaged on Annadelle’s spinal cord.

I’ll soon be linking the items or products we use on our “about” page for those that are interested in ordering it for their child or loved one with AFM.

Our plan for the weekend is to rest, hydrate, and heal. Chris is also super sick so I’ve been playing nurse to both dad and baby girl. Thank goodness I’ve had my mom here to pop in and check on them, too, because it is exhausting. Thanks, mamma!

If you would, please say a prayer for quick healing for Annadelle. We are hoping this sickness subsides quickly so she does not develop pneumonia. I would also appreciate some prayers for the sale of our old home. It is currently under contract and we are awaiting the results of the home inspection. We really need our home to sell for many reasons, but mostly so I can buy a car! I haven’t had a car since last April when we were in an accident caused by a distracted driver, and obviously we need one now more than ever.

February 12, 2019 Not Again

Although our time at KKI is over, our journey is far from it.

We left Baltimore on a Thursday morning with the intention of heading to Washington D.C. for a few days. We still had not heard back from Dr. Amy Moore’s office, so we decided it best to wait around in D.C. exploring all of the free touristy things offered until we did. We booked a room in D.C. and started to head that way, but we never made it. Dr. Moore’s office contacted us around lunchtime and told us they had a spot available for it- the next day at 4:30pm! If we wanted to see her, that was the only day available because she was leaving for vacation shortly after.

Little did we realize Baltimore was much further away from St. Louis than we knew. It was a 14 hour drive through 7 states, but we finally made it around 3:30am. We checked into the hotel and were asleep about 4:30am, then woke a few hours later to get dressed. We ate brunch at a trendy little diner close to our hotel that we found on Yelp called Kingside Diner. Annadelle loved getting to see a little bit of St. Louis, but it was bitterly cold so we didn’t venture out much.

We made our way to the hospital where Dr. Moore was, which was only a few blocks from our hotel. There were a few other patients in her office, one of whom we noticed was a boy slightly older than Annadelle and in a wheelchair. I wondered if he, too, had AFM and was consulting with Dr. Moore about a nerve transfer.

We had to wait quite a while to see her, but it was worth the wait. Dr. Moore was very friendly and lit up the room as soon as she walked in. She spent a lot of time listening to our story, how we got to where we were, and what kind of progress Annadelle had made since October. She talked to Annadelle for a bit and began to do an evaluation on her. She would pick up her hand and ask Annadelle to move it one way or another, then tell her assistant to mark a specific muscle or region a certain number, like “3 plus” or “4”, etc. From how she was measuring, I assumed 1 was little to no use of a muscle and 5 was complete normal muscle activity. She did not rate Annadelle a 5 on any region, but she did get scored a 1 on a few muscles, such as her quads. Honestly, it was a bit disheartening to hear how she scored her because we believed she had a lot more use of some of those muscles.

Dr. Moore did a thorough examination and scoring on Annadelle, but explained that in order to know exactly what nerves were firing and what weren’t, an EMG test would have to be done. This wasn’t news to us- we already knew an EMG would need to be done- but we’ve learned that EMG’s are not exactly pleasant so it is best to only put the patient through it one time. Dr. Moore has a doctor she trusts to do the EMG’s, so if she was going to do surgery on Annadelle, that doctor would do the EMG a few days prior to surgery.

Dr. Moore said that, based on her exam of Annadelle, she is definitely a candidate for surgery. However, it is too early to do surgery right now. Based on her knowledge of AFM patients that she has performed surgery, she said there is still time for spontaneous recovery of those nerves, so we need to give it 2-3 more months to see how much more she recovers before doing surgery. For her upper extremities, Dr. Moore said she was confident she had some good nerves she could pull and swap around to a higher part of her arm to give her more movement. I think she used the phrase, “That’s the easy part,” to be exact.

As far as her lower extremities, she said she was mostly concerned about her quads and glutes. She said those muscles are some of the most important muscles when it came to walking. Basically, you need the muscles closest to the trunk to walk. If you don’t have muscles working more towards your foot, you can still walk with a brace.

Unfortunately, Annadelle does not have very strong quads or glutes at all so Dr. Moore would need to pull from closer to her feet. That’s not a terrible thing to do on her right leg because her right foot is very strong, but her left foot is much worse. She can only move two toes on her left foot. Dr. Moore said if she pulled from the left foot, Annadelle would lose all motion in those toes. It’s like robbing Peter to give to Paul, a hard decision for us to make as parents, but one we pray we won’t have to make.

Dr. Moore told us to go home and continue therapy both at home and in the outpatient setting, then check back with her via email in two months. She said we could do something like FaceTime or Skype to do another evaluation to see if surgery is needed at that point. Now we just play the waiting game and continue to pray that she makes a significant or full recovery.

After seeing Dr. Moore, we decided to take our time getting home. We had been living in hospitals for four months and wanted to take a few days to just relax and enjoy ourselves. Somehow that brought us to Branson, MO where we stayed for a night. Unfortunately, there wasn’t much to do there except visit a butterfly garden. We thought Annadelle would love it, but it turns out she is terrified of butterflies. She cried each time one got close to her no matter how many times we showed her they could not hurt you.

After we left Branson, we made our way to Arkansas and stopped to see Chris’ longtime friend, Ty, and his family. We went to eat at a local thai place and talked to them for a bit about the nightmare we’ve endured over the last four months. I had not really thought about it until Meagan, Ty’s wife, mentioned it, but Chris and I have literally spent every single day together for the last four months. It’s honestly a miracle that we haven’t killed each other yet.

We finally made it home around 5:30pm today. At 7:30pm, Annadelle had a fever. She has been coughing a bit here and there, but her cough is still extremely weak. Of course, I have been terrified of her coming down with a respiratory illness after our stay in the PICU for 47 days. The PTSD is so real, y’all. I went ahead and gave her some Tylenol and some Mucinex. We’ve tried to make sure she drinks plenty of fluids and I turned on a humidifier next to the bed. I’m saying many extra prayers tonight that she doesn’t get sick enough to warrant yet another trip to the hospital. I’ve got a pulse oximeter ready just incase.

As usual, thank you for all of the prayers and support.