We just returned from a trip to Philadelphia Shriners Hospital. We were told correctly that they are the best at treating Arthrogryposis. This is true!!!! Sasha has officially started treatment by a process known as serial casting. They weekly or twice weekly stretch her foot and then cast it in that position. This has been an extremely painful process for her. We are now done with cast set one. We have many, many more to go. This is what Sasha calls FOO ~! Foo Philadelphia, Foo casts, Foo owie! Sasha love stand up...Sasha no love owie. Sometimes she is extremely brave and strong...sometimes she is over the top unable to handle all of this and resorts to some pretty bizarre behaviors. I cannot imagine what it must be like for her.
The doctors in Philadelphia believe she will walk. But the way this will happen is a long and at times very painful process. Sometimes I wish this wasn't an option. I don't know how we will make it through so for now we just are focusing on the next thing. The next cast the next trip. I'm sure some of you reading this have taken or are close to someone who has taken a long and painful medical journey. You know exactly what we are going through. My heart rips out when she is in agony and my flesh wearies of her behaviors. God is sanctifying us all in ways that none of us really like. It is for His glory but I will be honest ..this is the hardest thing I have experienced. I'm sure it is the hardest for Sasha too. Prayers are greatly appreciated as we know that without God's help we will not make it through this. My sweet Sasha cries out to Jesus over and over when she is hurting. She doesn't understand why it has to hurt so badly. I don't either :( So this is the FOO!! Lot's of good things are happening too. Most days and times are the same around here. Busy, crazy and wonderful but for the near future there will be lot's of FOO.
By the way had she been adopted younger it would have been easier. The longer a child sits neglected the harder it is to correct that neglect. I know without a doubt that leaving these kids to rot is a horrible travesty. Sasha was one of many children that need a family, need someone to care, to push them, to give them a hope and a future. Just as God has given us a hope and a future. So even though it is harder the older the child gets it is not impossible to help them. Physically, emotionally, spiritually. The need is great but the laborers are few.
Praying for the long journey ahead. Praying for pain relief too! Do they give them anything to help? They say bone pain is the worst pain. We started with O 9 months home before her first surgery. Wish we hadn't done it-at least wish we had waited longer, even though we felt she was bonded and attached at the time. She wanted the surgery and was old enough to decide. Who can tell whether or not she understood the long recovery process? She still is attached now 3 years later but it was a rough year following. HUGS and prayers for wisdom and patience for all of you!
ReplyDeleteWe feel her pain! It is such a hard road, but so worth it in the end!
ReplyDeleteSo exciting they think she could walk someday but breaks my heart she has to go through so much pain to get there. Let me know if we can ever help and we need to come visit you and meet your newest ones!
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