Coming Home!!!!!!!!!!

Dear Friends & Family,

We have a discharge date of 7/22. Yea!!! Personally I can't wait to be home. Of course there is a bit of fear and concern for the unknown, but I feel ready. For Allie however, there is much fear and great sadness. Although she is happy to be going home at the same time she knows she will not be going back to the life she knew and loved. Naturally she is fearfull that if something happens, she will not have the hospital staff to help, since I am the only one that has had enough time to be trained. She worries that she's "ruined" all our lives. The other evening she apologized again for my losing my job. She worries about the money required as a result of her injury. She grieves for the person she was and will never be again. I try my best to assure her that the way she is now is temporary, and that although she will never be the same person she was, that her life can still be full and the person she will become will be more than she was. I know she wants to, but I don't think she believes me.

Medically Allie still struggles with the daily ups and downs of her blood pressure. My biggest worry right now is that her trach cuff has been deflated for the last four days and she has no air leak and no voice. Her regular doctor is on vacation. This could mean her throat has swollen around her trach or the trach is mis-positioned.

Things at the house are moving along. My family really came through this weekend and a lot of progress was made on Allie's room and bathroom. Not to mention that they cleaned, packed and switched the furniture upstairs and downstairs. We still have a ways to go on the construction but are getting there! Allie and I miss our evening visits with Ron but he has been too busy with the house to come much.

On the positive side.....the best news of all is that Allie is eating. Her appetite comes and goes but she is eating some real food every day. In fact, she has managed as much as 3 pieces of pizza (compliments of Kerry & Brianna) a large bowl of spaghetti (compliments of my sister Sandra) sandwiches, and cereal from her hospital meals and ice cream (compliments of Kathi & Iz).

She is doing better driving her chair via sip & puff although she really does not like it. She's worked a little on the computer using the "quad joy stick" although this seems to make her more sad than capable.

My daughter is currently a mixture of agony, impatience, frustration, determination and unbearable sadness. She tells me everyday that she cannot live like this that it is too much and not worth it. Then when something scary happens like passing out or the problems with her throat (she knows a bleed in her throat is untreatable and fatal) she tells me she does not want to die. Those are the words that give me hope.

Thank you all for the continued hope, support, and prayers. The visits are wonderful and the best part of Allie's day. Once again thank you for the fundraiser. The money raised has made the re-model possible.

The hospital has been unable to secure a power chair for Allie's home coming. She is bummed about having only a manual chair. If anyone knows of a chair available for a borrow, please let us know. For some stupid reason they will not let me rent one. Some BS about Medical, and insurance. She will eventually get a chair of her own, but not until the halo comes off and then it will be several months until it is ready. Also, we are still looking for a van. We want one with a lowered floor, raised roof and under the vehicle lift that can support 600 pounds.

We love you all. Thanks so much. Gotta go my daughter is calling.

Love, Peace & Happiness,

Deborah