Day 4!

Today IS a better day! Yesterday we didn’t have much improvement in anything until about 5 pm so it was a little rough to watch her continue to be so lethargic. It was enough for us to feel like she might be turning a corner. But it was very short lived and then we had a pretty good night’s sleep again. 

 
This morning she has shown clear signs of improvement! She has been moving around a lot more, holding her head up better on her own and bearing weight on her legs multiple times. She is smiling a little and has been smiling at herself in the mirror (which is something she normally loves to do). She is still very weak, and seems to be a bit frustrated, but considering everything she’s been through, I feel like she is making good progress. 
 
Her incision looks better than expected. Yesterday they removed her head wrap and we were all pleased to see how even and neat the very large incision is. Dr Grant really is fantastic. 
 
As I was typing this, she just awoke again and when I offered food she said, “mmmmm”. That was a normal response for her pre-surgery, and it’s something we hadn’t heard until just now. Another great sign. 
 
The most exciting change is the lack of seizures. Again, we know that this change could be short-lived so we are trying not to get our hopes up yet. But as of right now she hasn’t had any of her big seizures since the surgery. And she has only had a handful of smaller ones. So we pray this continues to be the case. 
 
I’d like to thank all of y’all that have been praying so fervently for our little girl. I know they are being heard and we are seeing proof of it here. We are also so thankful to Dr Grant and his team. We are extremely hopeful that this is what we have been waiting for…….
 
Our thanks and love to everyone,
Liz, Brandon, and Maddie

 

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6 thoughts on “Day 4!

  1. YAY! So happy to hear things are improving. Continuing to pray for precious, little Maddie and all of you too. Loe to all.

  2. So glad to read this update and very happy you are giving us daily progress notes! These poor kids have a hard time coming out of things after surgery. Anna always had an increase in her focal seizures after surgery- but we rarely see them at other times. We have switched seizure meds due to necessity after her bone marrow transplant. We have hit the max of what is usually used for kids like her, but we need to keep on top of things. We are seeing more neuro problems because of radiation, but I guess it was a hard price to pay for a healthier bone marrow.
    Good luck and keep up the good work! I appreciate your efforts as there aren’t too many of us out there with kids who have or hard both bone marrow and neurological issues, We had entered a study and they have found a gene- but it has to go through one more test before they can let us know! I will keep you up to date when we find anything out!

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