Of course, there are so many wonderful things about spring! I do love it as a season. Poor Philip has already started feeling the effects of spring that make his days a little more complicated. Last night, he had so much congestion that he ended up vomiting twice. We haven’t dealt with that for a couple of months now and I’m not sure how I forget but I do. He deals with congestion constantly, even through the winter months so that we forget how much worse it gets during allergy season. Please pray for him. This is just the beginning. Pray for me. I want to try to manage it for him and make it easier but there really isn’t a lot more to do than we are already doing. So, I can get obsessed with trying to figure something out and fussing over him continually. It’s part of his care that I need to let rest in God’s hands. I know His grace is for Philip too, even strength to deal with allergies. I thought it was so bad last night that he would not sleep but he did sleep pretty well and I did, too. We both need that.
Joyanna is continuing to do well. After the second medication raise, she has rebounded back to where she was at the beginning of the year so that is wonderful. She is sleeping, eating, and playing well. Today, we had a consultation appointment with the doctor who would be responsible for the enzyme infusions. We are trying to accomplish all these things in anticipation for Brineura being available in May. She seems like a wonderful doctor with a kind heart. She reassured us she would try to do everything in her power to have everything ready as her own daughter passed away recently and she understands. That was a huge help and encouragement. The infusion center at OU Children’s is a neat place. Many kids receive their chemo there. There are areas to play in, watch TV, watch the aquarium, etc while receiving the infusion. It seemed like the staff was very great, too. The infusion reservoir would be placed by the neurosurgeon who has done all of Philip’s surgeries so that is helpful. We see her in a month for Philip’s follow up and can hopefully schedule a consultation for Joyanna around that time. She can also schedule any non-invasive scans—MRI, CT that she will need. She suggested waiting for the actual surgery until we know we have a drug available. We agreed and had already determined that. Ben said today that even if this is not going to happen until June or July, we will still move forward with it. Then, we can determine along the way if it is what we need to continue as ongoing care. Joyanna’s iPad has finally been approved by insurance and shipped. We should receive it soon. Then, she can begin using it daily in communicating with us. She has retained a lot of training over time through speech therapy but she really needs it in a daily sense to get used to the fact that it is her way of speaking. That will be quite a transition for all of us but I think it will go well. Please pray that it is a help to her and that she catches on quickly to daily use.
Ethan turned 3! He had a wonderful birthday this past Monday. Ben was off work for President’s Day so we went to the zoo and a couple of Ethan’s friends were able to go as well. The family that went with us also has a daughter Joy’s age. We got some good pictures of the boys and the girls. Then, later in the day, my nephews came over with their grandma for cake and ice cream. He wanted a tractor cake and Ben surprised me by saying he wanted to make it. He does anything he sets his mind on and the cake was fabulous. I wasn’t surprised by that! He’s a man of many talents! Ethan enjoyed his birthday. Joyanna did too and got out her longest phrase in recent days by saying, “Happy Birthday!”
Every day, the Lord’s grace is our strength. There are some days when I can almost feel it tangibly. He is working. I know that! In the little things that escape our notice often times and in the big things that we cannot possibly notice because they are beyond our limitations. I’ve been reminded lately how little I am and how EVERYTHING He is! Then to think that he works in the little things because he loves me is overwhelming! I hope all of you know my Friend in the same way! If you don’t, he wants you to know Him! He’s already been waiting for you to turn to Him and admit that your way hasn’t been working! He’ll take it from there. He’s amazing, truly awesome!
GREAT IS THY FAITHFULNESS
Great is Thy faithfulness, O God my Father,
There is no shadow of turning with Thee,
Thou changest not, Thy compassion's, they fail not,
As Thou hast been, Thou forever will be.
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide,
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided,
Great is Thy faithfulness, Lord, unto me!