Hi Everyone,
Thank you for your well wishes and support and concern over Allie's powerchair issues. The good news is that Bob Ludlow has come through for Al once again and has loaned her a chair, until we can obtain one for her. Thank you Bob!! You have been awesome beyond words and we love you.
The not so good news is that our discharge date has been delayed once again. Several issues have yet to be resolved. CCS has not committed officially to take Allie's case and help with expenses such as her vent (3K per month), wheelchair, as well as the many other items required. The bed that was provided is ancient and unacceptable as it is semi-electric and does not have the feature that allows her head to drop quickly. When Allie's BP drops it is critical that we lower her head or quickly raise her feet within seconds. Without this feature, it is not safe to have Allie come home to that bed. We have purchased a bed with a special mattress with some of Al's fundraiser money but that will not arrive for several weeks.
Anyway, we were both pretty bummed yesterday as we were counting the nights left sleeping in the hospital. We both miss our home, family, friends, pets and the redwoods so much! It is difficult for Allie to get her head ready for the big transisition and then find out it isn't happening yet. On the positive side though this gives her more time to work with her Doc that is back from vacation. She's eating three meals a day now and is weaning off some meds, which is incredibly wonderful.
Now that she is eating the next milestone is for her to talk. She will be working with the doctor's over the next couple of days to find out what's up with her trach. She has been unable to sleep for several nights. We are both getting pretty cranky as a result. Still, we continue to enjoy some fresh air on the patio every day and visits from friends are a huge treat.
We look forward to hearing from her surgeon soon (hopefully) for an idea as to when the halo comes off.
Thank you so much for your support. We really appreciate the response to Allie's need for a chair. I was so surprised to get offers just from the mention on her blog. It continues to amaze me how wonderful our community is.
Allie's strength of character and ability to get through each day is beyond my comprehension. She is truly my beautiful hero as are all of you for your love and support.
Love, Peace & Happiness,
Deborah
Allie
Tuesday, July 21, 2009
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This community we live in continues to amaze me. People are so wonderful. Glad to hear about the chair but sorry you are not home yet, soon Allie, soon. Love and miss you loads. Thinking of and praying for you always......
ReplyDeleteAllie and Deborah,
ReplyDeleteSorry for the postponement of the homecoming. But there must be a reason and maybe it is to fine-tune all the little things going on.
We will wait your arrival and make sure it's a sunny day when you do get home.
Praying the equipment issues get resolved quickly so we can have "Allie of the Valley" home again soon.
Love,
SLV Mom
Deborah We are so glad you keep the updates coming. Allie has made so much progress-I know you're all thrilled! Even though she won't be home as planned, these setbacks mean she'll be stronger when she is back in SLV. Keep up the good work Allie-we're all "here" waiting for you to be back in The Valley.
ReplyDeleteinteresting/inspirational news story on last night, this morning, I believe KCRA Sacramento tv station, ...young woman (25?) ventilator dependent quadriplegic from auto accident at 17 years old, applies to take state bar exam and was denied/sent refund, all because she didn't pay by credit card over internet...her payment was by check which was refunded to her. after all the obstacles she had to deal with to get through college and law school, to have a bureaucratic snafu happen, geesh. I am sure the situation will be resolved, and she will be taking the bar exam along with all the other applicants.....
ReplyDeleteinspirational story indeed
Allie, we love and miss you lots. Praying for you everyday. Can't wait until you come home. xoxoxoxoxoxoxoxo
ReplyDeleteAllie - always in my prayers, Deborah, Ron, & family too. Food, three meals a day, yeah! Must taste soooo good after all that time.
ReplyDeleteYou will need to let us know your favorite foods so that when you come home, folks delivering dinners (that is still going on isn't it?) bring you exactly what pleases you!!! I am one of those scheduled for dinner delivery in August. I know vegetarian, but what are your favorites, & favorite desserts, snacks?.....gotta have dessert!!!
Praying for everything, bed, wheelchair to fall in place so you can be home soon.
Deborah - bet you are exhausted, & fighting for equipmet doesn't help....from what I have read on the blog here - you sound like the type of person that won't take no for an answer. Don't settle for NO when YOU know better.....make noise until you hear that YES!
Let us all know if you need help dealing with powers that be that are uncooperative to Allie's needs!! "Unacceptable" - good word to use!!
RaptorMom