George and I are home and fine.

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That was fast and easy.  And you totally know how I needed SOMETHING to be fast and easy.

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The biggest reason that it was easy was because of Rachel.  Let me tell you about the BEST blessing for our family, this is such a good thing.  Backing up a bit, we knew last spring that for obvious reasons, our time of homeschooling was ending, and we needed to be proactive and find the very best school-school situations for everyone.  There is a wonderful public Montessori school just around the corner from our house, and even though they had never, ever had a child with Down Syndrome before, the principal and our first choice among the primary grades (ages 4 – 6) teachers were completely open to trying it out.

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But this school is part of a huge public school system – more than 140,000 children.  And those important administrator people who run the exceptional children’s department did their evaluations on George and decided he was so profoundly delayed that he would never succeed at Park Road Montessori School.  They didn’t even think he was smart enough to function in a self contained classroom for kids with intellectual and behavioral disabilities in a different school.  They thought he would be best off in a totally separate school for the very lowest functioning children.  NOT!!!  We had foiled their plans by carefully entering the magnet school lottery BEFORE having his disability evaluation, and there was nothing they could do.  However, they were not shy in telling us that it wasn’t going to work, and set up all the paperwork so it would be easy to move him out as soon as he failed.

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His teachers and principal need their own post (this one really was supposed to be about George’s ear surgery, sorry) but let me tell you about Rachel.  Dixon and I, with the complete support of the school (who, again, have been TOTALLY supportive of George being part of their learning community) thought that maybe having a one-on-one support person for the first little bit of school might help his transition… obviously the school system wasn’t going to supply one, remember they didn’t want him to be there in the first place.  Our amazing occupational therapist, Michelle Yoder found us an experienced OT assistant who wanted to work one more semester to save money for her masters program in OT…  and she is George’s school coach.   We thought for a long time about what her job title should be… not a shadow, that’s very passive, sounds like a really boring way to spend a day.  Not his assistant… her role is not to assist him, but to facilitate HIM doing his own work, making his own transitions.  So we call her his coach.  And it is PERFECT.  I promise, school stories and photos soon, he is thriving, developing, doing great.  We were initially going to just have her with George for a few weeks…. but when we learned how grim my cancer situation really was, Dixon walked over to school and talked to everyone involved, and Rachel agreed to stay on with George for however long we needed her.  It is SO wonderful to totally not have to worry about George at school at all.  Rachel is there, she manages everything, all the communication with the school based therapists and special ed folks, everything.  And since George really can’t tell us about his day, she sends home a VERY detailed report, every day, about what work he did, how things went, new things he learned…

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Here is George after his preop Versed…. my floppy child was now drunk and REALLY floppy 🙂  But anyway, when we found out that George would be having surgery today, since he wasn’t going to be in school, I asked Rachel to come help me so that Dixon could sleep, since he had to work last night and tonight.  As you can see from the pictures, George was very happy to have Rachel there, and I was thrilled to not have to be the person who had to play fetch when he threw his new stuffed bear for the millionth time…

This really was going to be a short post, sorry.  Back to George’s ears.  The surgeon opened up his left ear drum, used this amazing operating microscope (sorry, they didn’t let me back there to take photos) got those little ossicles moving, and put in yet another permanent tube.   He had not been hearing for several weeks on that side, so that should be lots better now. There was a tube sort of hanging out partially through his ear drum on the right, but when they did their tests under anesthesia, his ear drum didn’t vibrate at all,so they took out the old tube and basically did the same surgery on that side, and then made another new hole and put in another permanent tube.   I can’t tell yet how much better his hearing is, we just got home and i have been busy typing here.

One more thing, though, then I need to give George my undivided attention, since the anesthesia leftovers seem to be wearing off.  Thank you so much for all the love and support.  All the comments and the emails and the facebook messages!   And forty six people clicked over to Julia’s fundraiser  http://covenantbuilders.blogspot.com/2013/09/be-drop-in-their-bucket.html  … FORTY SIX people!  From here to there.  That just makes me so happy.  And no results yet from all the scans yesterday, and that receptor test isn’t done yet either.  Maybe Monday.  I’ll let you know as soon as I learn anything.  Meanwhile, keep praying.  Nothing has changed from yesterday about how dismal this whole cancer thing is, but knowing that so many people are here loving and supporting my family…. makes it seem so much less grim, you know?

Love

esd

19 thoughts on “George and I are home and fine.

  1. What blessings all around – talented surgeons, dedicated coach, love, and generosity for orphans. Go ahead and make me cry some gratitude and joy tears, whydontcha?

    Love & hugs & prayer

  2. Prayed for you at Mass today and will continue to do so. Will light a candle for you at our church over the weekend. George (and you) brighten my day and inspires me to acknowledge what is truly important in life. Thank you for that.

  3. So thankful George is out of surgery, home and what a blessing to have such a caring coach to help him and you through the journeys of a new school! Love you and praying for our inspiring friend and family!

  4. Great news about George. And isn’t it awesome that God found you just the right person to be your helper (and George’s coach) at just the right time?

    I know that your cancer diagnosis (re-diagnosis) is not good news for you and your family, but after not seeing a post for so long, and then reading Ginny’s request for prayer, I was afraid things were really dismal (I mean cancer is dismal, period, but I was afraid it was really, truly dismal).

    I will remember you in prayer, and your beautiful family. Keep your chin up. You are one really, super tough cookie.

    PS I’d love to here how Emily is doing. (Even though you don’t know me and it’s none of my business 😉 )

  5. wonderful news about George and we are praying for YOU and your family. Thank you for being an such inspirational person to all of us while you travel this journey you are on.

  6. You are a terrific teacher, did you know? One day, one problem at a time–this I have learned from you. I have increased my prayers for you and your family

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