Friday we had Gabriellas neurology appointment at Phoenix Childrens. Gabriella was happy and excited when we got on campus, which surprised me! We got in to the office buildings and signed in. I was obsessively using sanitizer after we picked up a pen or sat at a chair. Lol.
We got in to see Dr Kaplan, who is a great old-timer neurologist. He was impressed with Gabriellas progress! Said she is doing far beyond his expectations just 4 weeks after her stroke. He said constantly working at words and the arm is helping her heal faster. He also said she dodged a huge and harmful bullet and that it could have been so much worse given the kind of stroke she had. Praise God for his protection!
He spoke about the numerous stroke kids he has seen over his long career and he feels Gabriella will recover very well when it comes to speech. He reminded me to expect delays and problems, but its all the same things I was prepared for. Speech impediment, difficulty speaking fluidly and finding the right words, etc. I'm ok with that. Gabriella will get back what is meant to get back and will have an amazing story of survival to tell!
We talked about therapy, and he wants me to bring her to PCH for therapy. I'm starting to feel the same after how many issues I've had getting outpatient therapy scheduled out our way. I'm thinking of considering it. I have to weigh the pros and cons for sure. But I do feel she will be better treated there so I will have to make that decision quick.
His plan for her is to keep her on a 3 month treatment of Lovenox. We go back at the end of December to see him, talk about when to stop the Lovenox (petrifying to me) and schedule a MRI. Given the MRI looks good, she can be listed for her heart in January. He did say if she were to go into hard core heart failure before then, he wouldn't hesitate listing her. But while her heart is stable we will treat the clot and stroke thoroughly.
So its all good. We are ok with the plan and know God will continue to protect her!
After the appointment, we went to the Ronald McDonald house we stayed at those 3 weeks. I was able to show Gabriella where we went to shower, eat and sleep. We took them a big box of food I gathered from family and a bunch of kids utensils and dishes I had in excess. They were more than happy to accept and it felt good to help give back. I plan on gathering food and items to take monthly, by watching sales at grocery stores and gathering from friends and family what they have in excess. So if you live in the east valley and want to contribute to them but don't have time to get up there, email me and I'll get it to them!! I want to give back when possible, because it was such an amazing haven for us and a place to meet other parents going thru a similar struggle.
2 comments:
good to read an update. Please know that even if I don't get here to comment too often, you all are in my daily prayers.
question....so...will they keep her off of the blood thinners once she is placed on the transplant list? That scares me....but I don't know what else they can do. They can't do surgery if she is on a blood thinner, right?
Corey-
Once we stop the Lovenox, she will be on daily aspirin as a more gentle blood thinner. We will pray we know when it is best time to stop her aspirin, but since we aren't equipped with a few days notice when it comes to a new heart, they will have to do the surgery on the aspirin. I was advised to talk further with Loma Linda regarding this, and plan on doing that at our next visit there. BUT being on aspirin in surgery is much better than taking her off all thinners and risking another stroke.
XOXO
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