I felt an introduction would be in order as it has been sooooo long since we have posted an update. (It is clear my routine of writing on infusion days was interrupted and has not found its home anywhere else in the month.) The truth is, you know almost as much as we know even though you haven’t been updated. There’s one key fact to disclose: Joyanna is still at home! What? It’s the end of February, you say. Yes, yes, yes, we know. We are so blessed to have had two more months with our girl at home and yet, the awaiting move is still present in our thoughts daily. It has been a challenging juggling act. We are thankful for all the time with Joyanna here at home, but when you have prepared for such an emotional transition and then it’s left undetermined, it’s a little unsettling. Well, it is obviously something God wants us to navigate as there has been clear evidence it is not time for her to move yet. Many, many circumstances through January and February have resulted in limited admissions at TCC: Healthcare staff being at a low, Omicron, Supreme Court decision on vaccine mandates, renovation plans at TCC and probably more. There is a waiting list and Joyanna is not an emergency candidate. We clearly indicated to TCC staff that we did not want them to feel pressure to place Joyanna over patients with emergency needs. Though it is the daily unknown, we have had peace through these last two months. We’ve seen things taken out of our control enough times to know that we really have no control. The One who loves all of us more than we can realize has everything under control.
I am so thankful to say that Joyanna is doing very well, even though her last infusion was over 2 months ago. We have not seen any increase in seizures or neurologic activity. Her routine has changed because she is not going to school or therapy so she is sleeping in every morning but that would happen if she had the infusion or not. She is still smiling, laughing and enjoying her favorites so it really has been a special time for the family to be together. We did not expect to see such stability this far out from the infusion but we really have no idea what to expect. We have not received any information about others who have stopped the infusion and honestly don’t know that anyone has. Anyway, her doctors here have never experienced this so Joyanna is a real pioneer in the field of medicine. The only difference might possibly be in her hair. Before she started the infusion, her hair was straight. Since then, she has had a headful of curls, sometimes looking like we spend hours curling it with a curling iron but it’s been all natural. In the past two weeks, I notice that I am brushing out quite a bit of hair and in the shower, there is more gathering at the drain. So, she may be losing some hair. Time will tell.
I’ll try to update sooner and especially if we know a date that she will move in. We thank you so much for your prayers. I personally believe that God has placed a calming hand on Joyanna’s brain to make this part of the journey easier. I believe He is answering our prayers and yours on our behalf. May the Lord bless you for your love and concern for our family.
Many things about tomorrow I don’t seem to understand,
But I know Who holds tomorrow,
And I know He holds my hand.