We try hard to make each update as positive and hopeful as possible, as that is how we choose to view life.\u00a0 But, occasionally we do need to acknowledge our difficulties and ask for the prayers\/support of our family and friends to get us by.\u00a0 Now is one of those times.<\/p>\n
Ironically, of all of the difficulties Peyton faces, there is one that is most problematic, yet seems the most simple:\u00a0 Lack of Sleep.\u00a0 On top of the symptoms caused by Niemann Pick Disease, he also has struggled with sleep apnea.\u00a0 As many of you know, it is a terrible problem, as lack of sleep affects your ability to function during the day.\u00a0 Lack of sleep only exacerbates his current problems: slow speech, unstable gait, swallowing, seizures.\u00a0 Seizures being the worst.\u00a0 Last summer he had to be intubated and\u00a0 life-flighted to OHSU because of uncontrollable seizures.\u00a0 It has been difficult to control them since, and just last week he had a seizure in the middle of the night and fell and broke his arm :-(<\/p>\n
As most of you know, we have tried EVERYTHING to alleviate the sleep apnea.\u00a0 CPAP, oral devices, specialized pillows, and even the extreme measure of having a mandibular advancement surgery, which DID cure the apnea for 2 WONDERFUL years, but now it is back with a vengeance\u2026.So now we are told there is one more option: an INSPIRE device that can be surgically installed to stimulate the back of the throat to keep the airway open at night.\u00a0 (for those on CPAP, look into this, it is intriguing as there are over 2,000 patients with positive results).\u00a0 BUT, when the FDA approved the device, they only approved it for those 22 years or older.\u00a0 Peyton is 20 (and a half).\u00a0\u00a0 So, insurance is denying it.\u00a0 We have an appeal in process and this is where you come in:\u00a0 PRAY that Peyton can get this approved, so that his sleep and quality of life can be improved.\u00a0 It is so very apparent the next day when Peyton gets a good night sleep:\u00a0 he is much more engaged, less off balance, and his speech is much better.<\/p>\nOn another note, it\u2019s time for the Special Olympics Polar Plunge again.\u00a0 While Peyton is currently not participating in special olympics, many of his classmates and friends are, and we are still hopeful he will again soon\u2026\u2026.. \uf04a.\u00a0 It remains one of our favorite charities, we just wish they would change their fundraising idea from jumping into a freezing cold pool\u2026.but until then, Bryan will jump again this year next Saturday.\u00a0 If you would like to donate\/sponsor the jump, please log in to our fundraising site at: Feb. 2018 Update We try hard to make each update as positive and hopeful as possible, as that is how we choose to view life.\u00a0 But, occasionally we do need to acknowledge our difficulties and ask for the prayers\/support of our family and friends to get us by.\u00a0 Now is one of those times. Ironically,…<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"_links":{"self":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/140"}],"collection":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/comments?post=140"}],"version-history":[{"count":0,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/140\/revisions"}],"wp:attachment":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/media?parent=140"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nhttps:\/\/hadleyhope.us2.list-manage.com\/track\/click?u=817da2d73d4064201e337cb01&id=c5396d818c&e=c0550eaa5f<\/a>\nBlessings to everyone, and thank you once again for everything.
\nBryan and Laura\n","protected":false},"excerpt":{"rendered":"