Love For Ashley

Ashley turned 12 in July and just a few days before her birthday she donated her beautiful long hair to Locks of Love. The stylist cut about 11 inches of Ashley's hair. Ashley already growing her hair out to donate again next year.

There have been so many things going on since I last posted.  I apologize for not posting more often, I promise I will be more diligent at keeping up with and posting on Ashley's blog.  Soon I will post some recent pictures of Ashley but for now let me just update you on our little miracle girl. Back in September we made one of our many yearly trips to Gainesville, Florida for an appointment to Shands Hospital Liver Clinic.  We had the best appointment ever since Ashley's diagnosis with biliary atresia 12 years ago.  I am completely amazed at how far she has come, we were given such little hope when she was born.  At that appointment, the doc could not feel her spleen.  Not feeling the spleen is a good thing...a very good thing. For the past 12 years, Ashley's spleen has been huge (the size of a grown adult) and it was the reason for her not being able to participate in certain activities, horseback riding, gymnastics...and even regular physical educ...

I know I know...it has been a long time since I have updated this blog.  But I don't have to tell you that no news is good news.  Really, seriously, things have been extremely calm.  Oh I pray that I am not jinxing things here.  Ashley has been doing well, even though she has missed 26 1/2 days of school so far this year (we have 5 1/2 weeks of school left), she really has been very healthy.  As a matter fact, her labs have been the best they have ever been since her diagnosis 11 1/2 years ago.  Her white blood cell is actually normal, which means her body can finally start fighting off infection.  Her platelet count is still really low which means still no P.E. for school or full gymnastics or other contact sports but that's okay because all she does is dance. Speaking of dance, Ashleys life since late February has been consumed mostly of school and dance. She has competed her solo musical theatre dance routine three times so far this year an...

Sometimes as I am trying to fall asleep (like last night), I find my mind going into over drive instead of shutting off so I can sleep.  The scenario's that I dream up of in my mind certainly keep me up at night.  The horrible reality is some of these scenarios could really happen. Most of the thoughts that keep me up at night involve Ashley and sometimes Brad.  Sometimes I start to fall asleep only to be startled awake with one of my scenarios or as I call them my "awakemares." Scenario one:  I am awakend with Ashley's screaming, not just any scream but a scream of fear.  She is throwing up blood, not just like regular throwing up blood but like the Exorist throwing up. She is projectile vomiting all over her room.  Of course, I run to her room, dial 911 and then try to erase that scenario and go back to sleep. Scenario two:  Before I go to bed at night which is usally three or four hours after the kids go to bed, I check on them, cover them ...

Heart Healty...not exactly.  Last Thursday, I came home from work with a very blood shot eye.  I have never had a blood vessel burst in my eyes so I was kind of freaked out by it.  I remember driving home feeling tired, my eyes wanted to close and were very sensitive to the light.  I took Ashley to dance, but was nervous the entire 30 minute drive to and from the studio. Went to bed later that night hoping and praying that my eye would improve over night but it didn't. Friday morning my eye looked worse, and was swollen.  Again, it was senistive to light and I only felt better if I closed them.  But I drove the kids to their bus stop and myself to work.  I worked until 3:30 that day (I usually get off at 1 pm), so I managed to do my job with one blood shot tired eye.  However, while at work I researched what causes eye blood vessels to burst.  The answer was sneezing, coughing and....high blood pressure. I hadn't sneezed and I w...

In just about six weeks Ashley will dance, not just any dance; she will be competing in a big regional dance competition by dancing her very first solo.  It's completely amazing, seeing Ashley dance, watching her live through dance.  When Ashley was born almost 11 1/2 years ago, I never ever thought, we never thought Ashley would live to dance much else do her first solo.  I can't believe I am crying as I type this.  I didn't think I would get emotional.  It's just amazing!  When I put her in dance at age 3, I did it because I knew I needed to stop sheltering her.  She needed to be around other children.  She needed to feel normal despite what is trying to zap the life out of her; despite her disease.  Honestly I never thought Ashley would be a good dancer or even a great dancer, I just knew dancing was safe; it was the one activity the doctors felt didn't put Ashley's life at risk.  Little did I know how much dancing did and still d...

In my post found here I wrote about My New Life Resolutions.  Today I am going to share with you just a few of my New Year Resolutions.  These are just small but they will make a big impact. 1.  Living without Soda - this is actually pretty difficult but so far I am doing well.  I have decided to live without soda for two reasons.  First, drinking Soda can easily put unwanted extra weight on my body, by not drinking soda I can easily loose 5 pounds.  And second, I have very high blood pressure and I am trying to control my blood pressure with very little meds if none at all.  Soda has proven to be a culprit in causing high blood pressure.  My choice of drink now is water, lots of water; and if I want to flavor my water I use Crystal Light packets. 2.  Reading my Bible daily - I profess to be a Christian and I am strong in my faith but I am embarrassed to admit, I have never read the Bible.  I know Bible stories and a few Bible verse...