Love For Ashley

First, I want to thank those who donated money to Ashley's Liver Transplant Fund with the American Liver Foundation in honor of Ashley's birthday. We received four checks totaling $115 that I will be mailing to Ashley's liver transplant fund on Tuesday. Thanks to the Johnson family, the Koehne Family, the Stuart Family and the Blume family, your generous donation is very much appreciated. Not only did Ashley receive money for her liver transplant fund but she received so many gift cards and cash that she needs a bigger wallet to put it all in. Ashley is so excited about using her gift cards from the Limited Too, Justice, and Target to go shopping for school clothes. Not to mention the gift cards from Tijuana Flats and Dance Unique. Ashley also received some cool shirts and homemade jewelry too. In other words, Miss Ashley was spoiled. Using the theme "So You Think You Can Dance" to create Ashley's party was fun but a lot of work. Even though we had some issue

Today Ashley and I spent the morning getting a manicure and a pedicure with our friends, the Deery's. The girls really went wild getting their nails painted in some loud colors with beautiful flowers painted on them. After our morning getting our nails painted, we all went to lunch at Chili's.

Today I received permission to share the pictures below from last week. The pictures are from the two days the kids spent at some friends house during Tropical Storm Fay. We met the Deery's at the dance studio and although we have both been part of the Studio for years, it took this summer for a friendship to develop. Brad, Ashley, Caroline and Katherine have enjoyed spending time this summer getting to know each other and developing what I hope is a long term friendship. I, of course, have enjoyed developing my own friendship with Laura, Kat and Caroline's mom. Ashley and Caroline playing Connect Four Ashley, Brad and Kat playing Twister. Notice Brad in the best position. Caroline is on the couch acting as the official spinner. The gang playing Apples to Apples, I have no clue what that game is but the kids had fun playing it together. Brad and Ashley getting ready to eat pizza...yummy! Caroline and Brad playing chess while watching the movie, Notebook. See kids can multi-t

On Sunday, August 31, Ashley will finally have her 10th birthday party. We decided to go with the theme of " So You Think You can Dance ." We have invited over 25 of Ashley's friends, we have judges and awards; it should be fun. The girls are divided into 5 groups of 5 and will choreograph their own group routine to preselected music. The judges are older girls that were part of the Studio 5D Dance Company . I am praying that it goes well and all of the girls have a blast. So far all those invited will be attending so it's going to a room full of dancing screaming girls. I must be crazy...crazy in love with my daughter. This afternoon, I asked Ashley what she wanted for her birthday since her friends were asking what she likes. Right now, Ashley isn't into any one thing except dance. Today, as we were buying her party decorations, Ashley told me that she really wants someone to help her excel in dance, to help her with her leaps and turns. Ash has decided that sin

As of right now, we are at 2990 visitors to Ashley's blog. If you are the 3000 visitor let me know, there is a nice surprise in it for you.

“Although Ashley’s liver is failing, she isn’t sick enough to be placed on the liver transplant list. We were told that Ashley would need a new liver by the time she reaches puberty." Ashley was born at the end of July in 1998, but her story doesn’t start there;her story begins when she was just a little peanut in my womb. At 24 weeks gestation we learned we were having a girl, but our little girl had something wrong with her. Imagine sitting in the examining room, and the excitement of learning you are having a girl, then at the same time you hear the silence in the room when something is just not right with the baby. We were told that Ashley possibly had an ovarian cyst. It was normal and not to worry. But something told us it was more than just an ovarian cyst. As soon as Ashley was delivered she struggled to live. The umbilical cord was wrapped around her neck twice, and she was blue. Thankfully the doctor cut the cord immediately and although Ashley was still blue; she was b

The kids first week of school ended up being just one day thanks to Tropical Storm Fay. We have endured more rain and wind in the last 4 days that I have forgotten what sunshine looks and feels like. Unfortunately, just because the kids are out of school doesn't mean that Joey and I are out of work. However, the kids had fun spending two days at the Deery house. I would share pictures with you but I haven't asked permission to share them. But the kids had fun playing Twister, Apples to Apples, Chess and watching movies. Brad even sat through a showing of the Notebook, which he admitted was a very good movie. As I look out my kitchen window, the weather seems to be improving the rain is just a drizzle and the wind is calmer. Our neighborhood has a few tree branches down and mild flooding in some low lying areas but nothing major. We never lost power thank God but I am so ready for the rain to go away. We have tried dancing to "Rain Rain Go Away" but that didn't wor

Ashley's lab results are in. Although, they are changed from the last lab report; they aren't terribly surprising given that Ashley's liver disease is progressing. As I suspected due to Ashley's many bruises, Ashley's platelet count is down from 116,000 in February to 99,000 but her white blood cell count is normal. However, for the first time since 2001, Ashley's ALT and AST are in the triple digits, in February they were both at 83. An elevated AST and ALT means that Ashley's liver is inflamed. Remarkably, Ashley's vitamin levels are okay except her Vitamin E. People with liver disease cannot absorb vitamins, so having the vitamin levels checked is necessary to insure that the body is receiving the necessary nutrients to keep the body healthy. The important thing is that Ashley's bilirubin level is normal and her blood clotting time is normal as well. Having a normal blood clotting time means that if Ashley bleeds due to low platelets her body will

Favorite Restaurant: TGI Fridays, Red Lobster Favorite Foods: Pizza, Seafood, Strawberries, Watermelon Favorite place to buy clothes: Limited Too, Abercrombie , Hollister , Kohls, Dillards Favorite color(s): Blue, Green, Red, Gold, Silver, baby Blue, Green-blue Favorite Domestic Animal: Miniature Pomeranian , Cats (Ragamuffins and Calico's ), Rabbits Favorite Wild Animal: Bobcats, White Tigers, Koala Bears and Owls, Dolphins Favorite Things to Do:, Anything with dance, Brad's Baseball Games or Red Sox Games, Broadway/Musical shows, Movies with my friends, Favorite Places to Go: Any Zoo, Any Mall, loves to go on Cruises, Sea World Favorite Places to Visit or would like to Visit: Washington DC, Colorado, California, North Carolina Favorite Recording Artists: Jonas Brothers, The Cheetah Girls, Rascal Flatts , Trace Adkins, Carrie Underwood, Toby Keith Favorite Things to do with Friends: choreograph dance routines, swim, go shopping, go to movies. Favorite Things to do with Fami

Below are some pictures we downloaded from Ashley's camera. Brad being cool! Ashley and "So you think you can dance choreographer, Sonya Tayeh at the Hall of Fame National Dance Challenge The ducks at the Peabody Hotel in Orlando, Florida Ashley and her cousin, Heather Just Ashley Ashley and her friend, Jackie Ashley's friend, Haley with Nugget (Ashley's Hamster) Our cat, Skylar

Many of you know that we decided to take Ashley out of the dance company. As much as we loved watching Ashley compete the expense of keeping her in company could no longer be justified. We do hope that some day Ashley can compete again but for now she will take dance classes for the fun of it. Pulling Ashley out of the dance company was not an easy decision. As we watched Ashley dance during Nationals in July, we were still planning to have Ashley return to the dance company for the 2008-2009 year. However, we decided that we need to focus our financial efforts on doing household repairs, paying for Brad's braces, paying off bills and taking some much needed family vacations. Although Ashley loves attending the dance competitions, she is fine with our decision and looks forward to taking tennis lessons with mom.

Brad and Ashley start back to school on Monday, August 18. You know what is worse than the first day of school? Well for me it's having Ashley start school without her lab results. I called the hospital today to see if I could get her lab results and of course I had to leave a message. Now I am just waiting on the nurse to call me back with the results. My guess is with all of Ashley's bruises her platelet count is below 100,000 again (REMINDER: NORMAL IS BETWEEN 150,000 TO 450,000). I guess I will have to wait until next week to get Ash's results. For now, I can just keep saying to myself, "no news is good news." Today we met Ashley's new teacher and Brad's too. I got more emotional thinking about Ashley being in the 5th grade than I did when she started kindergarten. It's so hard for me to imagine that my baby girl is growing up. I can't wrap my head and my heart around the fact that Ashley will be starting middle school next year. I am

Today's visit at the Shands Liver Clinic although short was interesting. Ashley appears normal to most of us on the outside. She is growing normally, and looks like a perfectly healthy ten year old. However, now we are learning that her liver disease will slowly start affecting her appearance. Today we learned that Ashley has spider veins on her face, and she has red splotchy palms which are indicators of liver cirrhosis. We also learned that Ashley's constipation problem is due to her bile sludging and not draining properly through the intestines. We also learned that Ashley's back and neck pain is not because she dances but because she may have a bone density issue which is also related to liver disease. It could also mean that she has scoliosis; more tests and an orthopedic doctor are needed. Today I learned that joint and back pain are common in liver disease. With Ashley's new issues comes two more new medications. She is now on Mirolax to help with her constipatio

Ashley and I leave for Gainesville, Florida tomorrow; her appointment at the Liver Clinic is at 1:30 pm. It takes about 2 1/2 hours to get to Gainesville from our house so we will probably leave here no later than 10 am. That will give us plenty of time to stop at Ashley's favorite restaurant to eat while we are in Gainesville, T.G.I. Friday's . The restaurant is only 10 minutes from the Liver Clinic so it's in a perfect location. We aren't sure when we will be back home. I am pretty sure Ashley will have labs drawn while we are there and possibly an ultrasound. We will not know what tests are needed until after Ashley is examined by the doc. I really hope we are home by dinner time Monday night but just in case we have to be back at Shands on Tuesday, we are packing an overnight bag and staying at the Holiday Inn. I will update tomorrow after Ashley's appointment at the Liver Clinic. Please pray that Ashley's appointment/exam goes well and we arrive home safe a

Ashley is now wearing contacts. You should have seen her yesterday at the doctor's office putting those contacts in. Everyone, including me, thought that we would be watching Ashley get frustrated after 5 minutes of trying to put one contact in. Not my girl; Ashley got both contacts in her eyes in just under a minute! Not only could she get them in with no problems, she was able to remove them without problems too. As she was putting the contacts back in her eyes, she did so without looking in the mirror! I have been wearing contacts for 20 years and I still have to look in the mirror to put my contacts in. The doctor said they have never had someone as young as 10 years old get contacts in as fast as Ashley. Now with Ashley wearing contacts, we can see her big beautiful eyes and long eye lashes! Speaking of Ashley's big beautiful eyes. As Ashley was being examined, I asked the doctor what color eyes Ashley has. For years people said Ashley eyes were brown and I said no

Ashley really enjoyed her 10th birthday even though she only received a few phone calls (thank you Aunt Terri, Grammie, Caroline and Katherine, you made her day special). For birthday's at our house it is a tradition that the birthday girl/guy picks out where they want to eat for dinner or if they want to stay home, their favorite meal is cooked at their request. Ashley chose to go eat at Perkins Family Restaurant . After dinner, instead of birthday cake and ice cream, Ashley wanted to go to Cold Stone Creamery . After dinner and desert, we went home so Ashley could open her presents. She received a Vera Bradley purse and wallet and a new dance bag, and she also got $20 from her Daddy. Ashley's Vera Bradley Purse "Hannah" I am not a fan of Vera Bradley but I wouldn't mind having a Vera Bradley laptop bag or even one of the travel bags. Ashley still wants to get the cell phone case that matches her purse...maybe for Christmas. Ashley's dance bag is great. It&