October 8, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

I have received several messages about Annadelle and have two things I want to address because of it so that it keeps me from copying and pasting the same response.

First would be if I have seen the story featured on Good Morning America about several young children being diagnosed with Acute Flaccid Myelitis, a variant of Transverse Myelitis. Yes, I have seen the story and noted the similarities between Annadelle’s symptoms and other children diagnosed with AFM. I have not had a chance to speak to her neurologist about this but will ask him tomorrow just for peace of mind. For her sake, I pray she has not been misdiagnosed for the simple fact that many patients with AFM do not regain their mobility and are often left with permanent disabilities.

The second would be am I aware of the correlation between booster shots and Transverse Myelitis. Yes, someone mentioned that to me very early on and asked if Annadelle had received any recent boosters. The answer is yes, she had the MMRV vaccine on August 9 of this year. She has the MMR vaccine when she was 2, but received the varicella component only a few weeks before school started. I mentioned this to several of her doctors and all of them dismissed it, stating if it was related she would have had symptoms several weeks ago. I’ve never been anti-vax, but I do know no doctor on the planet would ever tell me vaccines caused this. In the medical world, the benefits of vaccinations far outweigh the risk to society. There is also not enough research to confirm whether or not this specific vaccine causes TM, mostly because the diagnosis itself is so rare that there simply aren’t enough subjects to have a conclusive study.

Either way, we are praying for and believing in complete healing because we know God is the ultimate physician. He can and will bless her with regained mobility and she will soon be a testimony that we will share time and time again.

We continue to ask for your prayers and thank you for your continued support. We love you all.

Friends, we need extra prayers this morning. The neurologist did not seem very optimistic about her not being able to move her left foot now. He is going to increase her steroids again to see if that could possibly help.

We haven’t seen PT today but Chris went ahead and put her in the wheelchair. We are waiting to see if we can go outside again.

Doctors are also starting her on another medication that sometimes gives relief of nerve pain. Her back pain has gotten much worse over the past two days, something the neurologist believes is an indication that her spinal cord is beginning to become more inflamed.

Today has been a very hard day. We have officially been in the PICU for a week with the realization setting in that we will be here a long time.

PT and OT came in to work with Annadelle after my last post. They have instructions to be aggressive with therapy which is what we would like because we know it helps, but it is so hard to see your child in so much pain just from sitting up. I think back to all the times she would sit down and say “criss cross applesauce” and giggle. Now she can’t even scratch her face without help.

We are staying in the PICU a bit longer because they are putting her on another medicine for nerve pain.

I have tried so hard to be strong for her but I must admit my strength is fleeting. I left to take a shower at the Ronald McDonald house and cried the whole way there and back. I begged God to let me swap places with her- take away her pain and give it to me. I would gladly lay in that bed if it meant she could go back to how she was two weeks ago. I feel so guilty for all the times I took her for granted, all the days I missed out on snuggles or giggles or even a smile. She doesn’t deserve this. No one does.

My baby girl perked up a bit after our outside stroll. Nurse Kendra let us go all over the hospital, even to the 3rd and 4th floors to see the aquariums.

When we got back, a food tray was delivered to her (puréed food) and she ate a good bit of mashed potatoes. She tried to drink some chocolate milk but got choked a few times. Her swallowing muscles have a long way to go, although the doctors have told us there is a possibility none of this will ever improve. I hear what they are saying, but I am still trusting God to show up and show out.

We are staying in the PICU for at least one more night so she can be monitored after a dose of Gabapentin. She also received a large dose of steroids with the hope it will help her to regain mobility. I say “hope” because there is no definite treatment for transverse myelitis.

I did ask the neurologist today about the possibility of this not being transverse myelitis, but instead acute flaccid myelitis like has been all over the news the past week. He told me what I already thought- this is not AFM. AFM is believed to be caused by entero virus 68 of which Annadelle tested negative. But even if it was AFM and not TM, the treatment would be the same and her symptoms would be identical. So basically, they are doing everything they can do no matter if it is AFM or TM.

Thank you for the continued support. Please say an extra prayer for my sweet girl tonight.

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