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.

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.

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.

Update March 28, 2007

This is a big week for Taylor, as it is her birthday this Friday, March 30. Taylor will turn six. She is excited to see some of her close girlfriends that will be coming down on Saturday for a Spa Day at Shriner's Hospital!

Taylor and her family plan to spend the remainder of the weekend taking it easy. Taylor has moved out of ICU and is now back on the third floor. She is breathing with assistance from the pacer during the day and remains on the ventilator at night. The doctors have not determined the reason Taylor was not getting the appropriate volumes with the pacer, but everything seems to be working well now.

Taylor is back to her same daily routine of spending the morning with her teacher and the afternoon doing physical therapy. She is once again doing her physical therapy on the bike.

Tomorrow is the lunch at the Arbuckle Golf Course to benefit the Taylor Parker Hope Fund. For more information, see the March 1, 2007 blog update.

Thanks for your continued love and support!

Update March 17, 2007

Taylor has been transferred back to the ICU at Shriner's. The doctors have not determined the reason that Taylor is not receiving a proper breath with the pacer, so they think that it is best that Taylor remain in the ICU while she remains on the ventilator.

The doctors have replaced Taylor's smaller tracheotomy with a larger cuff trach. The doctor's were concerned that her trach. might be leaking air and that might not be allowing her to get a large enough breath with the pacer. Taylor is still able to talk with her new trach., but just not as easily.

The doctor's plan to start Taylor on the pacer in a couple of days. They are hoping that she responds to her pacer after her diaphragm received a short break from the pacer. If she responds well to the pacer, then the plan is to place Taylor on the pacer during the day and on the ventilator at night.

We will keep everyone up-to-date on Taylor's progress. We appreciate everyone's thoughts and prayers.

Update March 12, 2007

Taylor has been doing well on the third floor. She likes her nurses and is sleeping through the night. She is also eating and drinking on a regular basis. The doctors are happy to see that she is gaining some weight.

Taylor continues to enjoy visitors, especially her friends. She was excited to see her friends Avery and Tara this past weekend. She also got a special out-of-town visit from her Uncle Brian and family.

Lately, Taylor has been having problems getting deep/full breaths with her pacer, so she is back on the ventilator until the doctors can determine the problem. The pacer and Taylor's diaphragm appear to be functioning properly, so the doctors are having to go through a trial and error process to figure out the problem. For now Taylor is staying in bed. This means that she's not able to ride her bike until doctors give her clearance.

Taylor continues to see the tutor. She's enjoying school and has been learning a lot of new words!

To call Taylor, call the Third Floor Nurse's Station at (916) 453-2156 and asked to be transferred to Taylor Parker's Room.

Thanks for your continued love and support!

Update March 1, 2007 & Fundraiser Info.

Taylor is enjoying her new room on the 3rd floor. She is now in room 336. See the right side of the home page for Taylor's new mailing address. Taylor started school this last Monday. She has a private tutor and works on her schoolwork from 9:30 am to 11:30 am. In the afternoon Taylor rides her bike for about 1 hour.

Taylor has been sleeping through the night since she moved to her new room. The lights go out at night on the third floor, unlike in the ICU where the lights seemed to be on at all hours. Taylor has also been eating more, which makes the doctors very happy.

Taylor can have guests on the weekends, but the family asks that you call before you come visit. The next update will include Taylor's new phone number.

There are three upcoming fundraisers to benefit the Taylor Parker Hope Fund:

1) March 17 from 5:00 pm - 8:00 pm in Gridley at the Guardian Building. Admission is $12 for adults and $7 for children 12 and younger. Admission will include a dinner catered by Casa Lupe Restaurant. A silent auction will also be held at the event. For more information contact Julie at (530) 570-6630.

2) March 29 at 1:00 pm at the Arbuckle Golf Course. Admission is $50 per person. Admission includes a tri-tip lunch, wine tasting, and a raffle for tickets to a Kings game. A silent auction will be held at 3:00 pm for 5 nights at a condo in Kauai, 5 nights at a condo in Puerto Vallarta, use of a duck blind for a weekend, and four tickets to a Kings game. For more information contact (530) 473-3433. We would like to thank the sponsor of this event - Foothill Warehouse. If you would like to play golf before the event, please call Andy at (530) 476-2470 to set up a tee time.

3) May 5 at the Elks Lodge in Woodland. Cocktails at 5:30 pm (no-host bar) and dinner at 6:30 pm. Tickets cost $40 per person and can be purchased at the door or by calling Melissa at (530) 669-7156 or (530) 666-1450. You may want to purchase your tickets in advance because the Elks Lodge can only accommodate 250 people. A tri-tip dinner will be served and a DJ will be on-site for the dancing portion of the evening. The evening will also include door prizes and a raffle.