Everyone had their flu shots last week except for Ben. He’ll get his soon. Flu cases have already shown up here in OKC so we didn’t waste any time. No one had adverse reactions to the shot though. That’s a blessing.
Joyanna is having her 9th infusion today. She didn’t really seem to gain progress over the last two weeks but I don’t think she lost any ground either. The one exception has been her neck. She hasn’t seemed as strong in holding her head up lately but there could be many factors in play and determining which one is hard. She doesn’t seem to be seeing well but we got a little explanation of that at the last infusion. Our rep from BioMarin was at the hospital that day and in conversation she mentioned the enzyme staying only in the brain. When I clarified, I realized my understanding of the process had been slightly off. We assumed the enzyme would circulate through her body but as far as they can tell, it doesn’t. That means the enzymes they are giving her are potentially not affecting her retina. Therefore, becoming blind is still an option. That explained a lot but was a little hard to process. She is still very vocal and is trying to say some words. We haven’t been making a lot of progress with that. She does seem to be doing a little better with eating. There has been less coughing and choking when she eats. She has even been able to eat a little with her friends at school during lunch. She likes to eat, especially any crunchy stuff, her teachers tell me.
The Lord is still teaching and leading. I’ve been realizing lately that our goal for Philip is the same as most other parents’ goal. It just looks really different. Most parents want their kids to find their purpose, calling, etc and fulfill it. They want them to finish what they’re supposed to do well. That’s exactly what we want for Philip. His calling was determined for him. God has carried him through it. We want him to fulfill his purpose as God sees it. Most parents don’t see all the lives their children will touch or even how. We just trust that God’s purpose for Philip will touch all the lives it needs to. We won’t have all the time here on earth to spend with him but we will have all of eternity. It really does shift your perspective. As I write that, I can’t help but think about you that are reading. I pray that you will be in Heaven with us. God loves us all so much and wants us to be with Him in Heaven that He made a way. I hope that you have asked Jesus to forgive your sins and have begun a personal relationship with Him. It isn’t complicated. I did that when I was 4 years old. I certainly wasn’t a Bible scholar. I just knew that I had done bad things and needed Jesus to forgive me. I knew He died on the cross for me and rose again and asked Him to forgive my sins. You could do the same today if you’ve never done that. Contact us if you have any questions. We’d love to find the answers if we don’t know them or know that you accepted Jesus.
I received a card with this poem on it a few weeks ago. The poem has really taught me so much. It sums up life’s difficulties so perfectly. He knows we are the happiest, the most at rest when we realize all He has for us through His loving care.
Through our difficulties we learn to be…
weak enough to lean upon His strength;
small enough to look upon His greatness;
empty enough to draw upon His fullness;
poor enough to depend upon His riches;
needy enough to count upon His grace.
–Roy Lessin