Demi’s Update: Reaching a Finish Line

I think it’s time for a little update. Demi has been doing very well. We’ve had some issues with neutropenia (her immune system) again. It’s been a little up and down through all of this coronavirus mess. We were pretty used to staying home and away from people before a stay at home order was initiated, so not much has really changed for us.

Demi is soaring in therapy. Tele therapy has not been my favorite experience. I find it very difficult to maintain the connection through whatever device I’m using and still manipulate Demi for therapy. Obviously some therapies are easier than others. I’ll be so happy when we can restart therapy as usual. Even though her therapist have not had their hands on her, she is still making major improvements and impressing us all. Our biggest challenge right now is some fine motor skills, but that isn’t uncommon when a child has a visual impairment.

We saw Demi’s retinal specialist last week and he had great things to say. Demi is still doing fine in regards to the left eye, which is the surgical eye. Her right eye is still healthy enough to not need surgery at this time. Of course because of our super successful left eye surgery it’s easy to desire her right eye to need surgery. Demi’s retinal surgeon has explained many times that the surgery is not performed in order to increase vision but to only save the eye. So until the right eye is at risk, there will be no surgery. We are very grateful that both eyes are healthy enough to bypass surgery at the time being.

New developments:

Last week Demi had one elevated liver enzyme. That elevated lab result raised some concern for potential liver issues or bone issues. Because she has to take so much medication, her liver has definitely been working hard. Also, since she has been neutropenic and getting injections to increase white blood cell production (immune cells), the bone marrow has been working very hard too. So I was very concerned about bone and liver health.

Today we saw an endocrinologist in a gastroenterologist. Both believed that Demi’s elevated liver enzymes was most likely a benign elevation that you can sometimes see in children her age. Both believed it was important to check out bone and liver for sure just in case. Those results came back supporting what they thought. That is incredible. So Demi’s one liver enzyme should decrease all on its own in time and her liver and bones are all healthy! Praise the Lord!!

Upcoming:

Demi is scheduled to finish her toxo medication on June 25th! We are so excited for her. We will have to figure out some celebration for this occasion. Our original plan was a Disney trip, but with recent events I think we will postpone that trip and come up with a new plan!

Demi has really been enjoying dancing and cuddling! She is a hoot! She loves to play chase! She loves kisses! She loves to hide from DaDa when we tries to take her from me! It’s precious! She has her glasses back and she is tolerating them more and more!!

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