{"id":1684,"date":"2011-06-01T20:54:26","date_gmt":"2011-06-02T03:54:26","guid":{"rendered":"http:\/\/www.learningtogetherathome.com\/?p=1684"},"modified":"2011-06-01T20:54:26","modified_gmt":"2011-06-02T03:54:26","slug":"shriners-update-with-a-couple-photos-of-todays-antics","status":"publish","type":"post","link":"https:\/\/www.learningtogetherathome.com\/?p=1684","title":{"rendered":"Shriners Update with a couple photos of today’s antics"},"content":{"rendered":"

To say we were amazed at the facilites and staff\u00a0of Portland Shriners Hospital\u00a0is an understatement.\u00a0 Everything was newly redone and the sheer number of staff that we saw during our hours there was just such a sharp contrast to any of our prior experiences with our children’s medical care.\u00a0 We were greeted by smiling receptionists, admission by informative admissions personnel and ushered into our examining room by a volunteer who grinned and giggled over Samuel’s antics and then served us tea and cookies, with a can of juice\u00a0for Samuel.\u00a0 I mean, she even ran to the other area to find him a straw!\u00a0 Yeah, we were amazed.\u00a0<\/p>\n

Once we met with his surgeon and\u00a0related staff, we really felt\u00a0a sense of peace.\u00a0 Suddenly we had a description for Samuel’s legs, beside the term “malformed” that was on his referral papers.\u00a0 His left leg is\u00a0described as PFFD<\/a>\u00a0(click on the link to read good old Wikipedia’s take on the term).\u00a0 <\/em>His\u00a0right\u00a0leg\u00a0has a shortened\u00a0femur and\u00a0it is\u00a0called an above the\u00a0knee congenital amputation.\u00a0 A bit of a misnomer in that it was never actually amputated, in utero or otherwise, but apparently this is the common term for a “missing” limb.\u00a0 Having these terms means I have now been able to do a more thorough info search and I am so pleased with the information I’ve now been able to find.\u00a0<\/p>\n

The surgeon and staff walked us through the options for surgically altering his left leg (yes, a Symes amputation\u00a0<\/a>\u00a0(click to read the definition)<\/em> is being talked about at this point).\u00a0 He will be receiving rods to reinforce a newly shaped knee and will, even further down the road, need a rebuilding of his left hip as well.\u00a0<\/p>\n

We were sitting there nodding our heads and still feeling a bit shell shocked, but it was different this time.\u00a0 This time there was a sense of peace and we could see the overall plan that was being put into place.\u00a0 A sharp contrast from our previous feelings.\u00a0 I count that as a huge blessing!<\/p>\n

We still have some decisions to make regarding the what, when and how of his surgeries (they are projecting an early Fall surgery date), but feel comfortable in the knowledge that we have phone numbers and a coordinator to liaison with as questions arise.\u00a0<\/p>\n

And then for the surprise!\u00a0<\/p>\n

We were then told that we would be meeting with the rehab coordinator and the prosthetics team.\u00a0 Within an hour Samuel had an appointment for his first wheelchair and had already been casted for his first set of “stubby” prosthetics!\u00a0 It’s no wonder that it has felt like a lottery winner’s dream!\u00a0 We travel back to Portland very soon again.\u00a0 We will be there for the week of June 12th in order for his fittings and final delivery of his new “boots” as Steve calls them.\u00a0 \ud83d\ude42\u00a0 We’ll be choosing his new chair too.<\/p>\n

God has been abundantly good to provide all of this for Samuel.\u00a0 We are so thrilled to be walking this journey with him.\u00a0 It is a stretching one and not something I would have ever imagined that I would be not only walking, but honoured to be a part of.\u00a0<\/p>\n

Just one more thing.\u00a0<\/p>\n

Shriners has asked us to apply for treatment for Garnet’s cleft too.\u00a0 We were surprised to learn that they can have empty spots available all because people are unaware that they are a specialty hospital offering treatments, surgeries and aftercare free of charge to applicants.\u00a0 It is not based on the financial standing of the family and their facilities are used as teaching and research hospitals and are staffed with highly trained and well recommended physicians and surgeons.\u00a0 Wow!\u00a0<\/p>\n

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~<\/p>\n

\u00a0And\u00a0just in case\u00a0you think I have my head stuck only in the medical realm, here is a bit of life from today.<\/p>\n

\"\"<\/p>\n

This first photo just makes me smile.\u00a0 Garnet is our fourth is age order and man do I appreciate his attention to detail.\u00a0 What you can’t tell by looking at this picture is that all that Rock Band paraphernalia that you see in our front foyer?\u00a0 It’s been moved from the living room.\u00a0 Why?\u00a0 Well, because he was vacuuming the living room and wanted to get to the edges!\u00a0 Yeah.\u00a0 I’m blessed.\u00a0 He brings great skills to our family herd.\u00a0 Nevermind the smudges and fingerprints on the mirror.\u00a0 That’s my responsibility.\u00a0 Umm yeah.\u00a0 Moving right along…<\/p>\n

\"\"<\/p>\n

This would be a common sight in our kitchen these days.\u00a0 Samuel loves to “break dance” and do tummy spins at a ferocious speed.\u00a0 He also does hand stands.\u00a0 And not just quick flips up and down.\u00a0 Stands (!) that last four to five seconds (counting with Mississippi’s) and sometimes longer.\u00a0 He loves to use his center of gravity to his advantage.\u00a0 And now that he has gained almost 4 pounds since coming home (!), he seems to be finding new ways to give his Mama a heart attack<\/del>\u00a0 thrill and delight us each day.<\/p>\n","protected":false},"excerpt":{"rendered":"

To say we were amazed at the facilites and staff\u00a0of Portland Shriners Hospital\u00a0is an understatement.\u00a0 Everything was newly redone and the sheer number of staff that we saw during our hours there was just such a sharp contrast to any of our prior experiences with our children’s medical care.\u00a0 We were greeted by smiling receptionists, […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"","footnotes":""},"categories":[17,21,39,29],"tags":[57,66],"_links":{"self":[{"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=\/wp\/v2\/posts\/1684"}],"collection":[{"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1684"}],"version-history":[{"count":6,"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=\/wp\/v2\/posts\/1684\/revisions"}],"predecessor-version":[{"id":1692,"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=\/wp\/v2\/posts\/1684\/revisions\/1692"}],"wp:attachment":[{"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1684"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1684"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.learningtogetherathome.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1684"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}