We did get Joyanna’s iPad and have been making adjustments to help the software fit into her needs and our daily life. She is struggling to use it practically. It’s still very novel to her so it’s more of a toy. The changes we are making will streamline only necessary communication until we can get her to understand more of its purpose. Joyanna is having more trouble seeing and certain other functions are decreasing as they have been. We will change her seizure medication this week again. She needs it. She is consistently having more drop attacks and tremor. Please pray that we have wisdom on the direction to take with medication. Because we’re waiting for Brineura to be approved and every week counts, each decision seems weightier to try to keep maximum benefit for her. On that regard, the infusion doctor we talked with went to work right away to call and make connections with other doctors, specifically the neurosurgeon. We knew that it would be Philip’s neurosurgeon and were happy for that. Ben asked me to wait a week or so after meeting the infusion doctor before following up with the neurosurgeon office to make a consultation appointment for Joyanna. On the day I was going to call, I received a letter in the mail for Joyanna from the neurosurgeon establishing an appointment. Philip has a yearly follow up with her in February and it had to be rescheduled for March 30 this year. The infusion doctor had called the neurosurgeon and seeing Philip’s appointment was coming up, she had directed her assistant to schedule Joyanna in an adjoining time slot on March 30. That may not seem amazing to you but in our world, appointments don’t get made without phone calls (sometimes 2 or 3), especially in extremely convenient timing (back to back with Philip’s appointment). I see this as God’s hand moving. Philip’s appointment moved because the neurosurgeon was unexpectedly out of the office. The infusion doctor has taken such a personal interest and made the phone calls for us. The appointment was made with little fuss and in good timing to have additional scans before the end of April. In order for Joyanna to begin receiving this treatment, many other “things” have to fall into place. It will surely take the sovereign hand of God to bring it about. Joyanna’s PCP is fully on board for her to start receiving it. I think he is eager not only for her sake but to be in on the ground floor of groundbreaking treatment for this disease and make his own clinical observations that will directly tie to other patients he might encounter. Honestly, when I see developments like this, hope springs anew in this situation. It’s hard to see her losing ground pretty quickly right now but she is fighting it and more importantly, God is fighting for her I believe.
Our primary insurance denied Philip’s tetrabenazine for a second time so we are trying to fill it through secondary insurance. We are now in the same process of waiting for the paperwork to go through the red tape. We may get to the end to find out it won’t be covered at which point we will probably go with a plan B. Please pray that the Lord makes it clear to us. He is back in school today so it will take a few days for him to adjust back to a more tiring day. Thankfully he doesn’t have any extra activities this week and can adjust quickly. His allergies are still not as bad as I was thinking so a dose of Benadryl at bedtime each night has helped make a difference. I pray daily for God to give Philip His strength and grace to face each day with its unique set of challenges. None of us has to handle exactly what Philip handles each day and only God can meet each of his needs. I trust that He will. He is doing a great work through Philip.
Ethan is potty-training. Now you might really understand why the post is late. Do you know how hard it is to keep a train of thought over several paragraphs with that many interruptions?! J He’s sleeping right now and though I’m not sure he’s still dry, he (or I) won’t know it until I’m done with this post! Which is now!
Thanks for praying for us!