Monday, April 30, 2007

April 30, 2007

We have been very busy with all of Taylors discharge work and all of her progress lately but I thought it was important to update everyone on a few things. Some of you may have heard by now that the May 1st go home date is no longer havppening. I would like to update everyone as to why. Back in Feb. 2007 we contacted Enloe Hospital in Chico to see if they would take Taylor on as a vent patient. We were denied. Ever since Feb. Shriners Hospital has been working on finding a company to accept Taylor. Taylor is considered a high liability due to her vent and trach. We have had all of our other home care needs in order for weeks and rady for discharge except the vent care. Last week we contacted Enloe again for a second review. They denied us again. From what I have heard they said the y did not want to acceept new patients due to Enloe wanting to close down the In Home Vent Care program. We ceived this news last Thursday. Shriners kept going and thankfully they found a company in Sacramento who will take Taylor as a patient. Now she can come home. Many patients are not able to go home if thye can not find care in their area. Many patients move to the town that will service them. Again, luckily, the company in Sacramento will service us.

The news media contacted me for an update on Taylor as they have several times in the past. We told them about Enloe and the problem we had had with them. The media contaced Enloe to get their side of the story and were told that Enloe hadn't heard of Taylor and that they never denied us. I find it hard to believe they can deny someone twice for the same patient and never know who the person is. Since the media has contacted Enloe, I have received several messages from their rep saying how Enloe would love to help out in any way they can. I want it to be clear that we are still using the company in Sacremanto as they are responsible for Taylor coming home. As you all knwo Taylor has had her whole world turned upside down in the last 5 months. She has had to get used to nurses picking at her, different doctors, bad food, even not being able to scratch her nose if she wants to (along with many other things we take for granted.) but the whole time she does it with a smile on her face and a big heart towards everyone. And still when you ask her what she wants to do it is to go home and get in my mommy's bed. You all have been so wonderful in your love and support towards Taylor, that I feel you should be aware of not only our progress and accomplishments but also the setbacks we face that come directly from our community. I can't tell you how wonderufl the people at Shriners have been in contributing to Taylor's progress and getting home. Dr. McDonald has been magnificent and Taylor could not be in better hands. We should be home in 2-3 weeks and are blessed everyday for the continued love and support you all send our way.

On a little lighter note, Taylor had her very first day pass on Saturday!!!! It was AWESOME!!! She was able to go to see her Aunt Lissy at work, she went to lunch, she played with her cousins. She had a great time. She didn't get nervous or anything. It was one of the best weekends we have had in a very long time. On Sunday she had her horses stop by the hospital and loved it so much. She was able to feed them with her mouth!!! She was so excited to tell me how she put the food in her mouth and the horses just ate it up without biting her. She really is doing well and I know will continue to do so.

She is doing really well on her bike. She is able to stay on it for the whole hour everyday and even pushes it a little harder these days. She is hooked up to the stimulators that make her leg do the work, but she is really doing great. She still isn't eating the hospital food, she says its really bad but she is gaining weight. We are still planning to do Christmas when we get home. She can't wait. She can't believe that our neighbors have said they would put their lights up for her. We will continue to keep you posted and thank you from the bottom of our hearts for all your love towards Taylor. It is so wonderful.

Friday, April 27, 2007

Update April 27, 2007

We are sorry it has been such a long time since our last update. Everyone has been very busy. It looks as if Taylor will be moving home to Chico soon. She is expected to be discharged the first or second week in May. Taylor is so excited to go home! She's looking forward to the Christmas celebration that was promised to her upon arrival. There are plans for Christmas lights, a tree, and all the presents that she received in December.

Taylor has enjoyed getting in her chair a lot more these days. She even went on a field trip the other day to the zoo. She was a little anxious at first, but was soon having a great time. Taylor has been going downstairs for school and the teacher said she is doing very well. Taylor got to get inside the family's new van the other day. The van is equipped with a lift and seats for Tanner and friends in the back.

The May 5th fundraiser is only a week away. Please join us at the Elks Lodge in Woodland at 5:30 pm for dinner and dancing. Tickets can be purchased at the door for $40 or by calling Melissa Phillips at (530) 669-7156 or (530) 666-1450.

Thanks for your continued love and support.

Monday, April 9, 2007

April 9 2007

Sorry it has taken so long to update everyone. Everyone has been very busy. Taylor had a great birthday. She is now 6 years old. She was able to have a "spa day" with a few of her girlfriends. The party was great and everyone had fun, but Taylor was extremely tired towards the end. She loved all of the presents and phone calls from everyone. Easter was a great day too. She was able to go down stairs and do an Easter egg hunt and even take a trip outside.

She is doing much better with her breathing lately. She has taken a few trips outside and has enjoyed them very much. She is continuing to ride her excersize bike and go to school. She is getting up more and more into her chair. The doctors are still hopefull that May 1 2007 will be the target date for going home. Taylor is thrilled!! ( so is the rest of the family) She wants to go home so bad and see all her friends and "get into my mommy's bed".

It has been a very long and exhausting journey but the family is so thankful to everyone for thier continued love and support.