We received word yesterday from our insurance case manager that the insurance has approved one treatment. We are not really sure why just one but paperwork is being filed to communicate that this is an infusion every other week and hopefully get 6 months approved in an evaluation cycle. BUT, we received an approval!!!! This indication in the right direction gave us enough information to schedule the surgery. We are waiting to hear back the earliest time they can get her into surgery. Please pray the schedule or the surgeon will have/make a spot soon. We have communicated that we will work with whatever they can schedule soonest.
While trying to guard my expectations, I was fully planning to get a denial and work with BioMarin to get the medicine. We are so thankful for an approval and are praying that the subsequent infusions are also approved.
Joyanna was sick earlier in the week but is better now and has had a good day today. She still seems to be holding onto most functions though they come and go at times. The one thing we are struggling to get her to do is eat. She has been here before and we’re not sure what has triggered this again. Please pray that the Lord can help her maintain all functions since we are so close it seems to getting the treatment.
Philip is still about the same overall. The gift of last week was a full day of smiles and even some laughs. To our knowledge, he wasn’t sick so it was very unexpected which made it even more of a gift. We took many pictures that day. The camera can never fully capture his beautiful smiles. Even though his eyes can no longer see, they are still the windows to his soul. When he is able to smile, there is pure Philip joy in those smiles. It truly brightens my day. When you see it, you can’t help but smile yourself. He is such a sweet boy. God has given Philip the perfect gifts for the journey for which he was created. Even though last Thursday was full of smiles, he has still been giving a few a day since then. It’s so cute because his two front teeth have come back in now and they figure prominently in those grins!!
We’ve been enjoying stay-cation this week. It’s been nice. Slow mornings, trying new recipes together, getting odd jobs done that don’t get done other times. We enjoying traveling but it is more complicated with a lot more equipment and supplies. Stay-cation means all that stuff doesn’t have to be packed and checked and rechecked but we still get to spend family time together. And the kids still get to nap and sleep in their own beds. It’s a win-win. We get to look forward to another week of stay-cation in July!