Love For Ashley

All cookbooks have arrived, all seven boxes. We also received a nice surprise, we only ordered and paid for 300 cookbooks but we received 341. Before we deliver the cookbooks, we need to place all the tabbed indexes inside the cookbooks. Although this seems like tedious work, it is relatively easy to do. Right now, Ashley is sitting on our living room floor surrounded by many boxes, inserting the tabbed indexes into the cookbooks. I need about 10 people over to get these tabbed indexes in quicker so we can get the boxes out of the living room and the cookbooks shipped to you. By the way, I am feeling much better today. So far no temperature, although right now I am sweating but that's because I was moving 7 boxes into the living room. My stomach seems to be settled. I have eaten for the first time in two days so hopefully my little tummy bug flew the coup. Love to all

Ashley's doing better and was able to attend dance company rehearsals Saturday and she was finally able to eat something for lunch on Saturday. She still doesn't have much of an appetite but she at least is on the mend and is no longer contagious. Me on the other hand. I have been very healthy these last few years; hardly sick at all. Yesterday, I came down with a very nasty stomach virus and I am frequently in discomfort. Other than a bout with intermittent stomach cramps and frequent trips to the bathroom, I feel fine. Hopefully this little stomach bug will go away very soon. And I pray that I don't pass it along to anyone else in the family especially Ashley. Cookbook Update : I just checked the UPS website and the cookbooks are on time, in Orlando, and should be delivered to our house tomorrow, June 30. I am so excited. We have 80 more cookbooks to sell, so if you haven't ordered yours yet please do so today. Please see information about ordering cookbooks at the ri...

Update: 9:00 pm., Ashley's temperature has skyrocketed from just 99.2 to 103.2. We have just given her Motrin (people with liver disease cannot have Tylenol). Hopefully, we can get her temperature controlled. Can I just tell you how much I hate it when she is sick. Right now, she is resting in her bedroom. She has been sleeping on and off all day. STEP THROAT . Yep, Ashley came home from dance intensive last night complaining of a sore throat. At first, we just thought it was due to dehydration and exhaustion but she woke up with a low grade fever. Her throat is flaming red with those lovely very red dots all over it, which means she has a very bad case case of strep. Ashley made it almost 6 weeks without stepping foot in a doctors office; I think that is a record for her.

Since Ashley is part of a competitive dance company she is required to take a Summer Intensive Dance Camp. And when they say intensive they mean it, it's 5 hours of dance non stop. I wasn't sure Ashley would last through 5 hours of dance a night but she has. With this camp she takes Ballet, Lyrical, Jazz, Tap, Modern and Hip Hop. Ashley has never taken a Modern class before but she loves it. She told me that she would love to incorporate a Modern class into her regular dance schedule. That would mean 9 hours of dance classes a week. Not sure about that but it certainly would be cheaper for her to take more classes. Ashley loves Ballet, Jazz, Lyrical and Modern. She likes Hip Hop to but unfortunately she is a white girl with really no rhythm to keep up with the fast paced Hip Hop choreography. She says Hip Hop is fun and is a release of energy. Her least favorite class of all time is tap. If Ashley had it her way she would never ever take Tap again. Ashley has one more week of h...

Yesterday, I spoke to the people at Morris Press Cookbooks and the cookbooks have been shipped. According to the UPS schedule, I should receive all 7 boxes of the cookbooks on June 30. For those of you who paid for shipping, I will mail your cookbooks out to you the first week of July. Therefore, you will receive your cookbooks by the second week of July. I am so excited...I hope you are.

If you have BA (biliary atresia) or if you care for someone with BA and you blog about your journey with biliary atresia please leave a comment under the post with your blog address as well as a brief description of who you are and the title of your blog. You don't have to include the description of your blog if you don't want to. I'll put all of the blogs together in one post and I will also list the blogs in the sidebar of the Love for Ashley blog. My goal is for your blogs to be used as resource for those looking to connect with other people dealing with biliary atresia and want learn more about the disease and liver transplantation/organ donation. Please, ONLY leave a commnet if the blog is your blog, don't post somebody else's blog address.

Ashley's next trip to Shands is officially schedule for August 11. Originally scheduled for August 18 but because that is the first day of the new school year, we rescheduled the appointment. Ashley will be seen by Dr. Gonzalez in the Liver Clinic. Before her appointment I need to schedule a complete upper GI study on Ashley. This study was ordered by her docs in February when Ashley had her Endoscope and it was discovered that her stomach is misshaped. The odd shaped belly could just be normal for her anatomy or the cause of her enlarged spleen. A few days before we leave for Shands Ashley will also have a series of labs drawn to see how that liver of hers is functioning and to see what her platelets are doing. Hopefully, this appointment will show no surprises. I am sure she will need an abdominal ultrasound to check out those three ugly little masses in her liver. The trip to Shands may turn out to be a two day appointment if all goes well.

Growing up I always had faith in God and never really questioned His existence. Often people ask me when I became a Christian, my response is always "I have been a Christian since the day I was born." Many people believe that you need to ask God into your heart but I believe that God is always in your heart you just have to feel Him. Unless you ask God to leave, He is always with you. There has not been a day in my life where I have questioned God's existence in my life. He has always been a huge part of my life. I am not a religious person but I am strong in my faith and in my Christian beliefs. When people ask me what religion I am, I say I am Christian but I am a member of a Lutheran Church; in reality I belong to the Lord Jesus Christ. To me it doesn't matter if your Baptist, Catholic, Methodist, Lutheran, Presbyterian, etc., what matters is if your a Christian. Your religion is secondary to your firm belief in God, our savior Jesus Christ. Having a child with a l...

This last week has to be the busiest week I have ever had as a mom; with three days of dance classes, two days of recital rehearsals, and two days of recital for Ashley plus a couple days of baseball practice, Karate classes and a weekend baseball tournament for Brad. Honestly, how in the world did I get myself into this? Is this what I signed up for when I decided to be a mom? Not only did we have all of the above this last week but my mom and my 15 year old niece, Marisa, was in town as well. I feel sorry for Marisa, we were not able to do anything exciting with her while she was here; no Disney, Sea World, Universal Studios, etc. We have done nothing but local shopping, a half day at our local city water park and a very wet and nasty day at the Kennedy Space Center. It was hard to schedule activities first because I still work from 8 am to 1 pm Monday through Friday and second because things cost so darn much these days not to mention the gas prices. Even though we live in central F...

The kids last day of school was Friday, June 6. It has been a very long year and both Brad and Ashley have worked hard at school. Ashley received her report card on the last day of school and received 3 A's and 2 B's; she is officially a 5th grader. She only missed a total of 11 days this year not bad for someone with a chronic illness. I try hard to schedule all of Ashley's tests, surgeries and doctors visits, etc. during school breaks which helps minimize her absences in school. Brad did really well in school too. He made straight A's his entire 6th grade year. He was worried about his Algebra class because he did not feel good about his final exam, which had a total of 190 points. We have no idea what he made on his Algebra exam but it doesn't matter because he finished his 6th grade year with a 4.0 GPA. As a mom, I am very proud of both kids, not just because they have good grades but because they maintained those grades with their very busy after-school ...

I enjoy doing dance because I am becoming a better dancer every day. I like dancing because it is fun and exciting. It is fun because you get to do something you love. Also, because you to dance to music you love. It makes me happy to dance because your teachers will be nice to you and treat you like they are your mom. I think it is exciting because when you start a dance you never know what the steps are going to be and how the dance will end. It is also exciting to see your parents react to your dancing. Next it is fun because if you compete in dance you never know if you will win 1st, 2nd or 3rd place. That is why I love to dance because it is fun and exciting. This was written by Ashley at the beginning of the school year when the students were learning to do writing prompts in preparation for the FCAT. This writing prompt didn't score very high but by the end of the year her prompts were scoring at 4 and 5. She ultimately made a 4 on the writing portion of the FCAT. Th...

We have one more week of dance before Ashley's recital which takes place on June 14 and 15. She is dancing in 5 numbers; Ballet, Lyrical, Hip Hop and two Jazz numbers. The picture below is of Ashley in her lyrical costume. Ashley is a competitive group dancer but only competes in Jazz right now. What catches my eye in this photo is her beautiful leg extension and that pointed toe. Ashley is amazingly flexible but she is still not confident in her dancing ability. I think she has potential to be a good dancer, maybe a great dancer; not the best dancer but certainly not the worst. Next year we are hoping that Ashley will compete in Jazz, Lyrical and Hip Hop.

Today at exactly 11:07 am I turned 43 years old. What do I want for my birthday? Absolutely nothing, I have everything I have ever wanted; a great loving husband and two beautiful children. Plus I have fabulous sisters; I love you Terri, Renee and Nichole, and the best mom ever! My life is good, how can I possibly ask for more.