First off we have to apologize for our blog...it is auto-emailing many of you. We aren’t sure how this happened, or how to fix it. I have gotten the emails as well and also the spanish ones. We have been so busy that we’ve hardly had time to address the issue. Nonetheless we wanted to let you know we’re aware and hope to get it fixed ASAP.
In good news, Oliver got his long awaited chair for feeding and activities. Our insurance finally approved it after waiting for more than 9 months. The invoice was for $5,800! Medical equipment is so expensive! Thank God we have insurance and also CAP Medicaid (for medically fragile children).
We leave for Boston on Thursday, and will have a whirlwind trip of tests and appointments. We’ll meet with the always awesome Dr.Thiele, have a 24 hour EEG, and a rapid MRI. Our main concern is Oliver’s regression in language. 6 months ago he was saying 35 words in a speech therapy session, now he struggles to get out 5. Yesterday morning he did not make a sound for hours. He is having trouble with words that have always been very easy for him “Mama”, “Eat”, “Ball”...it is so hard to watch him struggle. Our hypothesis is that he is having many more seizures than we are seeing. Sigh. This is so hard.
Some of my friends were part of the "Beach to Battleship" Ironman event a few weekends ago. we feel like we are in an emotional Ironman. Almost 5 years of changing diapers, having a monitor by our ear every night, dozens of EEGs and more nights in a hospital than we'd like. Being the parent of a sick child is an endurance race.
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When Andrew and I were just married, we ordered a leather couch to match the leather chair he got from working on Dawson’s Creek. The chair came from "Restoration Hardware" so we got the couch to match. It is still the most expensive piece of furniture we have ever bought.
Guess who has bitten two large holes in our couch? And before you say “you can get it fixed” we realize that. The problem is that the biting continues. It appears the couch is going to take a rest in Haley’s room over the garage as we hope and pray we can get through this "extended" biting phase. In the meantime, my friend Liz has started a business helping folks decorate, and is helping us make new choices in the living room that are more Oliver friendly. I’m thankful for her friendship and also for her understanding of the challenges of decorating with Oliver in mind. She helped us re-do our breakfast nook and we’re really happy with how that turned out. It gives us more seating and the hammered zinc table top is perfect, since it already looks beat-up. As Grandaddy Jim said “anything Oliver does to this will only add to the patina."
Haley is still being an amazing help with Oliver and really getting settled into life in Wilmington. We were happy to host 50 of the college students from our church for a luncheon yesterday. We want to get to know Haley's friends and let them know our house is always available for them. I was so impressed by the generosity and hospitality of the Bonneys, the Stratas and the Philips in college and I’d love to replicate that for Haley and her friends.
My apologies for blogging less, it seems the very long work weeks and the complicated nature of Oliver’s care leaves little time for writing. We’ll be updating at least once or twice from Boston for those of you who follow our trips up there.
It is always an honor to know that so many of you are praying for us and cheering us on. Even though it can be lonely, we know that we have so much love.
It is always an honor to know that so many of you are praying for us and cheering us on. Even though it can be lonely, we know that we have so much love.
1 comment:
Thanks for the update! We will be praying for you all and a good and productive trip to Boston!
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