Fund for Princess Annadelle

$18,280 of $20,000 goal

Raised by 113 people in 1 month
Created October 2, 2018
Unexpectedly, last week Annadelle  came home from school not feeling good and running a fever. After seeing several doctors and not seeing any improvements, Neeli and Chris took their baby girl to Mobile’s Children’s Clinic. An MRI revealed that she has an extremely rare illness called transverse myelitis, which inflames the spinal cord and interferes with messages sent from the brain to her limbs. Her breathing has gotten better; however, she is still receiving treatments from the respiratory therapist. As of now her treatment plans include steroids until the cause of the illness has been determined. A recent spinal tap will reveal the cause. Her team of doctors expect a hospital stay ranging  from weeks to possibly months. If you are able and willing, please help this sweet family. 

Annadelle is a proud kindergarten of Mrs. Lynn’s class at Orange Beach Elementary. She aspires to be a princess when she grows up. Please help Princess Annadelle and her family! Also, please continue to pray for strength, healing, and comfort. We believe in the power of prayer and know that God is the ultimate physician. Our faith resides in Him and gives us comfort.
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11/14 Lunch Update from Neeli-

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.

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11/13 Evening Update from Neeli-

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.

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11/12 Evening Update from Neeli-

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!

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11/11 Night Update from Neeli-


➡️ 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!

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$18,280 of $20,000 goal

Raised by 113 people in 1 month
Created October 2, 2018
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