The good and the bad of recovery.

Anna Morgan
Feb 13, 2021
4 min read

Alex continues to do well and surprise us with her resiliency. Not that we should be surprised at this point but somehow still are. The house in Quinlan has been such a blessing. It has given us the space for Alex to move around on her scooter board. I will post a video of how she used her board. It’s pretty amazing. The outdoor space has also been great. We have taken a walk every day and been in the swing most days.

The first few days we were here the weather was gorgeous but since then each day has been colder. Apparently Texas winter has arrived with all of its fury! Up until today we have managed to bundle well enough to walk and swing. I don't think that will be happening the next couple days but we will see how creative we are able to be. Before her surgery mama cut the seem down the left leg of several pair of pants and installed velcro so we are able to get them on her for going out. They have been so helpful but we didn't bring anything for this kind of cold. She sure is happy when she is in this swing. She always wants to go higher. We never push her quite high enough since there is no way to buckle her in and be sure she won't slip out. She was like this as a baby even. The swings never went high enough, daddy never threw her high enough!! She has always had a bit of a wild streak!!!

I've got to be honest, I much prefer to share the positives and how well she is doing rather than spend time focusing on the hard. That said we know you praying for her and us and it helps for you to know how to pray so for that reason I will take this space to share some of the hard. Overall it has been positive but there is pain and while she manages it well most of the time we are always weaning off the narcotics a little at a time and that does leave us with some breakthrough pain. There are also the times she just doesn't want to take the medication and we allow her to make that decision and she goes too long and then hurts while we wait for the meds to kick in. It's difficult sometimes to balance allowing her to make some decisions but also know where we need to make demands even when she doesn't want to. The other struggle we have is itching and that getting in the way of sleeping. The good thing is that we know that itching means healing and that knowledge has helped her cope with the itching better.

During these times we snuggle, read, watch movies, and lots and lots of rubbing her little leg. Rubbing the little foot is definitely the activity that dominates the majority of our time at this point but it helps her so much so it is worth it. It's a good distraction for her. James Harriot Treasury for Children, Brambly Hedge and her Little House on The Prairie books are her favorite ones for us to read together right now. One of the moments when she was hurting the most she looked at me and said, "I wish I had never" and then she stopped herself and thought for a minute. After a little while she said, "I'm actually glad for this pain because I have to do this part to get my disease out and get my backward foot". This made me cry and I just hugged her tighter. It is constantly amazing to me what is going on in her little heart and mind.

Nights are difficult due to the lack of distraction. The itching is always worse at night and wakes her regularly. The hardest part of the night is usually between 2:30-5 when she needs me to be touching her and rubbing her foot and not stop. Please pray that we are able to figure out how to get her more comfortable at night so she is able to rest better. Last night was a little better and I am hopeful each night will be better than the last.

Here are some pictures of her enjoying all the fun. Brent rolled the rug back and the two of them have played a lot of tic tac toe on the tiles. Legos are definitely a favorite past time. She loves building them and then sets them up all over the floor and plays with them by scooting herself around on her rolly board. Candy land is something she and I play several times a day and of course the swing! Thank you to each of you who have sent things to help keep this little active kiddo going.

Today she was gifted tickets to the Dallas Aquarium Zoo so we did that as a good activity to get out of the cold. There were lots of favorite things to see and do but these were the highlights. We went back to the Shark tunnel, penguins, manatee, and flamingos about three times each and watched the otters for about a half hour. She is such an animal lover. It was a fun activity, a great distraction, and got us out of the house for a little while. It was a sweet gift.

We may have watched Dolphin Tale 1 & 2 each three or four times in the last week. These have quickly become Alex's favorite movies and she wants to watch them over and over again. She has asked to go visit winter and of course we have told her we will plan that trip as soon as we are able.

The other kids are doing well with Grandma and Pap Pap. Keeping up with their school work and other responsibilities and we hear from the Grands they are being helpful and sweet. We are enjoying our daily facetime conversations with them but counting down the days until we are all out here together. We continue to get pictures of cakes LaRue is making, activities the boys are doing, and fun they are having.