Our first Christmas post-AFM has come and gone, and boy did we enjoy it.
Each year since her birth, Annadelle and I have taken a “mom and me in front of the tree” photo. It is something I look forward to every year to see how much she has grown, but can you believe I almost forgot this year? With all the craziness going on in our lives, I believe that is to be expected.
It’s hard for me to look at these photos and compare then to photos taken earlier this year. My baby girl is so different now. I’m always thinking of how things were and praying things return to close to what they once were. I wish so badly that she could walk or at least crawl in order to gain back some of her independence. I see comment after comment from parents whose children were in the same shape as Annadelle who are now walking, so I know there is hope. I just keep asking God when he will bless us the same way.
With that being said, I know things could be much worse. Annadelle is actually in a lot better condition than many children with AFM, so I don’t have much to complain about. I try to keep my complaints at a minimum as it is, but I’m human so they leak out periodically.
It took Annadelle forever to go to sleep on Christmas Eve so Chris and I were up very late getting her gifts ready. Santa got her a huge Barbie camper and a new Barbie mansion. It took Chris over 4 hours to put it all together, bless his heart.
It felt strange to us buying so many gifts, as we had tried not to do that in years passed. We had been focusing on gifting experiences rather than physical items as a part of our journey to minimalism. We downsized our home and had been in the process of going through and getting rid of many of our possessions when Annadelle got sick, but we somehow managed to come home from the hospital with more gifts than could fit into her room. That didn’t count her Christmas gifts, so the toys are now overflowing into the living room.
Chris and I decided that since Annadelle sleeps with us, we would just turn her bedroom into a playroom/gym. In the next week, we will be taking down her bedroom furniture and getting prepared to transform the room so that it will be accessible when we get home from KKI. I put together an Amazon wish list for Annadelle’s medical supplies and therapy equipment. I shared it with my Facebook friends in the hopes I could find many of the items used (and cheaper) and was surprised to receive a few packages on Christmas Eve from friends who had ordered the items straight from Amazon. One of the items was a tray that can be used in her car seat which is very helpful on long trips for anything that is difficult to hold in her lap.
Once Christmas morning came, Annadelle spent quite a while opening all of her gifts, not only because of the amount of items she received but also because we had her open most of the items unassisted. We had to continuously remind her to use her left hand and arm to help open the gifts.
Tomorrow we will travel to Mobile for Annadelle’s PT evaluation with USA Health. That is where we will be going for Annadelle’s PT and OT unless we are able to find a better place closer to home. Mobile is about an hour drive from our home, so traveling there each day isn’t ideal.
Annadelle’s neurologist in Mobile, Dr. Maertens, actually called me the other day to check on her progress. I told him we would be in Mobile on Thursday if he wanted to come by and see her during her PT evaluation. It meant a lot to me that he called to check on her, no matter if it was from intrigue or genuine care.
As far as Annadelle’s progress, we have noticed a significant improvement in her left arm since we have been home. She is able to do opposition on all of her fingers on the left hand, which is something she could not do when we left Birmingham. She wasn’t activating her quad in her right leg, either, but I am almost positive I saw her do it today in the bath. I even called Chris in to see if I was just wishful thinking, but he agreed with me that he thought he felt her engage it.
Every night I have been praying specifically for Annadelle’s complete healing. I place my hand on the affected areas of her body and pray for God to restore her completely. I have faith He will do it, but there are times I worry. I have to keep reminding myself that if I am faithful, He will provide. I just have to keep trusting and believing.
If you are reading this, can you do me a favor? Can you say a specific prayer for us tonight, that God restore her movement in all of her muscles, specifically her left foot and right leg? Can you also pray that He strengthen all the muscles that are currently working so that she can return to her normal self again? The God I know can do anything, as He is the ultimate physician. There is nothing He can’t do.
Thank you for the prayers and good thoughts, and also for the overwhelming support during this time in our lives. I wish I knew of a better way to express my sincere gratitude.