November 18, 2018

We are bored out of our minds here in the hospital today. Playing the waiting game is pretty agonizing at this point seeing as to how we have been in the hospital for 49 days now. There is only so much walking around the hospital, watching TV, or playing games you can do.

Hopefully we will hear something tomorrow about where we will be going for inpatient rehab. I spoke with our BCBS case worker yesterday and she helped to explain what we should expect. She said our policy doesn't cover transport to a facility out of state, but it would cover the facility itself as long as it is in network. This means we would be responsible for providing our own air transport. We asked if we could take her ourselves by car or by ambulance, but because of the distance we can't do that. It would be considered outpatient at that point.

Our case worker also told us that if a bed wasn't open at KKI before the end of this week, we would not be able to go there inpatient. At this point, she does not have a medical need to be in the hospital, so we would be responsible for paying for our hospital stay while waiting on a bed at KKI to open (which is expected to be mid-December). However, once KKI found out that Annadelle is not breathing assisted with the use of a vent or a trach, they said it may be possible to squeeze her in sooner. We expected an answer on that Friday but since we didn't, we are waiting to hear back from them on Monday.

If for some reason KKI doesn't accept us or if they won't have a bed open this week, we will be transferred to Children's of Birmingham for inpatient rehab. COB did not have a bed on Friday and were on full diversion, but a new friend of mine at COB with her daughter told me this morning she knows of beds that may have opened over the weekend.

We're praying the Lord leads us to where we need to be for the best possible recovery for our sweet girl. Thank you to everyone for all of the prayers and support along our journey. Please continue to keep those prayers coming!

November 16, 2018

We have learned today that BCBS will not pay for our transport to KKI. KKI has received our referral and is looking over it, but we have not been accepted yet. If we are accepted today (a *high* possibility), there isn't a bed available until mid-December (as of now) so we are trying to find another place to go in the meantime.

We feel that we are being pressured into going to Children's of Birmingham because that is just where they send a lot of their inpatient rehab patients from this hospital. CoB does not specialize in spinal cord rehab like somewhere like KKI or the Sheppard Center in Atlanta and it doesn't take a medical professional to understand that because of her diagnosis, she needs special care.

We are feeling very overwhelmed today. I'm asking for extra prayers of peace, comfort, and patience. We know when the light seems dim, the Lord comes through in a big way. We are trusting Him for many blessings.


Annadelle did pretty awesome today in PT. Miss Megan helped us “walk” around the unit in the gait trainer. She did a lot better with it today. She seems to be improving just a little bit each day.

When PT is not here with us, we have been doing exercises with her ourselves. Sometimes she will do more with us than she will with PT, but she does more for Miss Kaelin than anyone. She has come to know and love Kaelin. Kaelin is a PT student who has chosen Annadelle’s case as herassignment. I guess she has to write a case study or whatnot, so we gave her permission to use Annadelle’s case for school. We want other students to be able to learn about the benefits of PT regarding this rare disease.

Annadelle is so ready to go back to school. She kept asking me to take her to see Miss Ann (one of the hospital teachers that has been working with her) to do school today. We have been trying to work with her each day but there are some days she just isn’t up to it. I hope she doesn’t get too far behind.

November 15, 2018

We are still playing the waiting game today. Children’s of Birmingham is currently full and they are diverting to other hospitals. We have been approved to go there, but from what I understand we are waiting to see if our insurance will pay for us to stay here until Children’s gets a bed. Our option might be to go home and then travel to Birmingham when a bed is open. It all depends on what insurance will pay for.

We are also waiting to hear back from KKI. There is still a possibility that we could be going to Baltimore but we won’t know for sure until we hear back from them. KKI is our first choice for rehab.

We had a great morning with PT. We put her in the gait trainer so she could “walk”. She moved both of her legs this morning and was much more comfortable in the trainer than she was yesterday. It is baby steps at this point but she is definitely improving. Praise God! Side note: I got permission to get the photo of the PTA helping Annadelle.

Please continue to pray for our sweet girl!

November 14, 2018

Our sweet girl is in great spirits this morning even after being stuck for another IV. Dr. Maertens decided to do another round of IVIG this morning so we had to poke her again. She handled it like a champ.

The social worker came by and said she is waiting to hear back from KKI. If we can’t get in to KKI inpatient, we will definitely be going to Birmingham for inpatient rehab.

Chris left just a bit ago to go home and drop off a load of toys we had received while being here. He’s also grabbing us some warmer clothes in preparation for our journey. We aren’t sure how long we will be in inpatient- it could be a week, a month, or longer depending on what her PT decides. From all the research we have done, we have learned patients with TM/AFM typically have much better outcomes if they have intense inpatient physical therapy very early on after diagnosis.

Please say a quick prayer for our sweet girl that she continues to improve and have a full recovery. 💜💜💜

#annadelleyeah

annadelle95.jpg


Annadelle is showing a reaction to the IVIG given today. Her skin is very splotchy over her face, chest, and legs. The resident told me they sometimes see this type of reaction at the tail end of IVIG administration and we will continue to watch it over the next few hours. She said it typically subsides in 2-4 hours.

Still no word on where we will be going for rehab. KKI has not returned calls from the social worker. They went ahead and sent our chart to Children’s of Birmingham in the event we can’t go to KKI.

Please continue to pray for our baby girl.

#annadelleyeah


Annadelle just wiggled her pinky toe! 🎉🎉🎉

November 13, 2018


It looks like we may finally be ending our journey here at USA Children’s and Women’s Hospital in Mobile. Annadelle was taken off the methadone and her duo tube was removed. Yippee!

Now we are waiting to hear where we will be going for rehab. We had spoken to our doctors about the possibility of going to Baltimore to the Kennedy Krieger Institute, a world-renowned pediatric spinal cord injury rehab facility right across the street from Johns Hopkins Hospital. KKI is known for their intensive rehab program specifically regarding neurological disorders including TM and AFM. Many other parents we have spoken with whose children have battled TM have highly recommended KKI to us.

We were told that because of our insurance, it is likely that BCBS of Alabama will only approve for in-state rehab unless a facility in Alabama cannot give us the same care as KKI could. Our social worker is checking to finalize all the details to see where we will likely go on Thursday. Basically, we know we will be headed to inpatient rehab but we are not sure if it will be in Baltimore or Birmingham. We should know more by tomorrow, hopefully.

Our neuro came in today and saw Annadelle up “walking” in the gait trainer I had asked PT for. He was thrilled at her progress and believes she will make a good recovery. We asked him specifically about what he thought of the CDC’s “diagnosis” of AFM, to which he basically told us he did not agree with the diagnosis. He said if this was AFM we are dealing with, he does not think she would be progressing as she has.

We have told our doctors all along that she will recover, not just because of the slow progress she is making but because of the promises from God that what we ask for in prayer we will receive! The gospel of Mark 11:24 says “Whatever you ask for in prayer, believe that you have received it, and it will be yours.” We are believing and trusting in a full recovery that simply can’t be explained by medical science. Period!

We still have a long road to go and will now be battling our insurance for needed items and care. We are so ready to go home! Please continue to pray for us as we determine how we will get to rehab and where we will go from there.

#annadelleyeah

November 12, 2018

“But that’s how amazing God is. He takes the pieces of our stories that seem like setbacks and uses them as the foundation to set others free.”
— Karen Stott, author of An Intentional Life

We have had a good day today. Annadelle was able to show Miss Ali, Miss Kelly and Miss Kaelin how she could move one of her toes on her left foot. She is also moving her left arm more.

We were able to ween down the methadone again today. Dr. Goslings consulted with Dr. Merritt and determined her high heart rate isn’t from narcotics withdrawal- it might just be her normal heart rate. So now she’s down to methadone only once a day.

Annadelle was also fitted for a wheelchair today. We talked to a social worker and it seems getting items we need will be difficult due to fighting with insurance. For example, insurance won’t approve something as simple as a shower chair, so we will have to order one ourselves. It’s a pain, but we are thankful we are on our way out of the hospital.

Annadelle’s calorie count yesterday was only about 830, but she continually says she isn’t hungry. Her supplemental feeds they are giving at night will be from 8pm to 5am instead of 7pm to 7am. We are hoping this will cause her to be hungry enough to eat. But honestly, she is eating as she normally would at home- she’s just super picky and absolutely will not eat something she doesn’t like even if she was starving.

We are currently waiting to hear whether we will be inpatient or outpatient PT/OT. Once we know that, we will have a better idea of when we are going home. I am praying for Wednesday but at this rate, who knows!

#annadelleyeah

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November 11, 2018

W E E K E N D U P D A T E

➡️ Dr. Merritt is busy down in the PICU so we have a new attending this weekend and remainder of the week (Dr. Goslings). She is working on weening us off the duo tube and methadone. We were going to come off methadone today, but I mentioned her heart rate has been running 130’s-140’s even when she is calm so Dr. Goslings decided not to ween her today. She thinks the high heart rate could be a result of narcotic withdrawal. As far as her tube goes, she is taking all of her medicines by mouth (which she hates because they taste terrible). Now we just have to get her to eat a little more. I suspect they will ween down her night feedings tomorrow and that may help her eat more during the day.

➡️ Weekend PT came in and she was not very cooperative. I am hoping she will do better with Kelly or Megan and Kaelin tomorrow. They have been with her since the beginning and she does better with them. I had to bribe her with a Polly Pocket to get her to do it on Saturday. 😑

➡️ My Mom is helping us work towards getting ready to come home, as far as making sure there is enough room to accommodate a wheelchair and whatnot. We also ordered a foldable trundle bed so that she can sleep with us comfortably. ❗️❗️❗️I am currently looking for a pulse oximeter with an alarm for nighttime use. I have included a photo from Amazon of what I am looking for. I am hoping someone can sell me a used one for much less than the cost of it new (as it is outrageous!). If you know of someone who has a working one they are willing to sell, please let me know!❗️❗️❗️

➡️ After bath tonight, we worked with Annadelle to exercise her legs and arms. We do this several times a day when PT isn’t here. Tonight Annadelle was able to wiggle her left toes ever so slightly! This is a HUGE blessing beause it shows that movement is slowly starting to come back! She is also able to use her left hand to touch her left shoulder with help. Praise Jesus for answering prayers!

➡️ We will know more about our plans after tomorrow when regular staff returns to work, so I’ll update about that as soon as we know. As of right now, we are aiming to go home mid-week! Sqqquuueeeeee!!!!!!!

Thank you for all of your support. Please continue to pray for our baby girl!

#annadelleyeah

November 10, 2018


We took a stroll around the hospital today. We didn’t get to go outside with it being so cold but we promised her we would go as soon as the cold front passed. I took some pictures of the outside of the hospital on my way back from showering this morning so she could see it.

We have a new doctor today- Dr. Goslings. She is up to date on Annadelle’s case and has discussed our exit plan with us. She went ahead and had us start counting Annadelle’s calories so we can remove the duo tube. Hopefully that will happen by Monday. We have also weened methadone once more, so only one more step down until we are off of it. Hopefully the only medicine we will have to go home on is Gabapentin.

We have had a lot of people ask us about the diagnosis of AFM from the CDC so I wanted to take a second and explain our thought on it. Keep in mind we are not medical professionals, but we have spent A LOT of time researching TM and speaking to parents of children who are also diagnosed with both TM and AFM. We have also spoken extensively with our doctors here at USA Health and with Dr. Ness at UAB who has been treating these cases for most of her career.

With all that being said, we do not believe Annadelle to have AFM for several reasons.

First, her neurologists specifically ruled out AFM early on. We asked about AFM several times and each time we were assured her case presented differently than AFM, mirroring TM more than anything. The largest indication she has TM and not AFM is that her MRI showed abnormalities in the white matter, NOT as much in the grey matter as would be seen with AFM.

Second, it is our understanding that AFM is believed to be the result of enterovirus, something she did NOT present with upon arrival to the hospital. It was not noted in any of her lab work including a spinal tap given 3 days after we were admitted. She did develop enterovirus while we were in the hospital, but that is not uncommon at all. It is just one of the viruses on the long list of possible hospital-acquired infections you can get.

Third, her onset of symptoms was much different than that of a typical AFM case. It was several days before her loss of movement began, something that is usually seen in TM.

Like I said, we aren’t medical professionals, but I think it is important to know the CDC made their ruling based on stool and blood samples, not on a description of symptoms or reviewing the MRI results. They don’t even know what causes TM or AFM for sure, so I’m baffled as to how they can look at labs and determine a different diagnosis than her doctors and a doctor we consulted for a second opinion.

I’m also not sure why the Alabama Department of Public Health has chosen not to release the area we are in. I’m assuming they want to avoid mass hysteria of parents who don’t understand this condition or how it is acquired and treated. If you happen to speak to someone about AFM or TM, please ensure them it is in no way contagious. The best way to prevent this from happening to your child is to practice proper hygiene and hand washing techniques, as is the same with many other diseases.

Thanks for all of the support. Please continue to pray for a complete recovery. We are believing God in complete restoration and healing!

November 9, 2018

Talking to aunt  Jeanie Childs


Talking to aunt Jeanie Childs

We ventured out to the classroom today!

We ventured out to the classroom today!


Dr. Merritt came by to see us today at our request. We wanted to get an idea of our plans for next week before everything slowed down for the weekend.

She explained that we still have a few things to do before leaving, including weening the remainder of the methadone. She is on the minimum dose so they are stretching it at 12 hours, then 24, then off a day. That should happen over the weekend. She also has to eat enough that she can come off the duo tube. Right now they are giving her feeds at night and taking her off feeds during the day. She is on 65ml/hour overnight. I explained to all of her doctors that they will never see her eat enough that they will be happy with- she is a grazer and eats like a bird. She will go several weeks barely eating anything, then suddenly eat and eat and eat. That is her nature. To see her eat an entire bowl of mashed potatoes was pretty much unheard of at home. I think Dr. Merritt understood what I was saying because she agreed that every time she came in to see Annadelle, she was munching on something. She eats all throughout the day, just not a lot at one time. Hopefully that will not keep us from having the duo tube removed Monday or Tuesday.

As far as plans to leave, Dr. Merritt says we are looking at between Tuesday to Thursday. Praise Jesus!!!

On a side note, we received word today that the CDC has officially listed Annadelle's condition as Acute Flaccid Myelitis (AFM) and not Transverse Myelitis (TM). AFM is the condition many of you may have seen on recent news reports as a "polio-like" illness affecting young children. We did not receive an explanation as to why the CDC has ruled Annadelle's case as AFM. Her onset of symptoms and MRI results are classic TM characteristics, so...

While the CDC states there is no treatment for AFM, our doctors here have told us the treatment for AFM and TM is exactly the same. That includes steroids, IVIG, and plasmapharesis. Annadelle has had 3 rounds of IVIG and may possibly receive another round next week depending on what Dr. Maertens wishes to do. Personally, we have noticed the greatest improvement not after IVIG, but instead after a large dose of steroids.

Please continue to pray for us as we are not excited about the diagnosis of AFM. We are currently seeking a third opinion from Johns Hopkins Hospital in Baltimore.