Skip to main content

A Double Digit Birthday

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's pink and black, of course and is fairly large. It has lots of pockets inside the bag as well as the outside. Hopefully, the new dance bag will help Ashley keep her dance shoes and accessories organized. I was really hoping to find some beautiful dance wall art to hang in her bedroom but I haven't been able to find anything. Right now, Ashley's bedroom walls are pretty empty.

Ashley is now officially in the double digits and hormones will soon be raging! YIKES!

On the liver front, Ashley and I will be leaving for Shands Children's Hospital in Gainesville, Florida on Monday, August 10. I am not sure what is planned for Ashley during this visit. When I called the tx team, they said that they wanted to examine Ashley first and then schedule necessary tests. This is the first time in ten years that we don't have a medical itinerary in place before we leave for Shands. Because we don't know what tests they want to do on Ashley, Ashley and I will be packing an overnight bag and staying at a hotel just in case we need to be back at the hospital on Tuesday.

It's a little strange not knowing what is in store for Ashley during our trip to Shands. Having a plan helps me prepare Ashley physically and emotionally for what is going to happen. Although, Ashley normally does well during her multiple tests, labs, CT scans, MRI's, scopes, etc. She only does well because I prepare her ahead of time for those tests. I have told Ashley that even though we don't have a plan, we have to prepare ourselves for the possibility that more tests will be needed not just a physical exam.

Tomorrow, Ashley goes to the eye doctor. It seems her eye sight is getting worse and she is even having problems seeing with her glasses on. I promised Ashley that we will talk to the doctor about contacts. If Ashley can put the contacts in at the doctors office then she will have both contacts and glasses. Although, I think Ashley looks beautiful with her glasses on, Ashley feels awkward so we will look into the possibility of contacts.

Both the kids are doing well and can't wait for school to start on August 18. Ashley will start school with a new set of eyes and unfortunately Brad will start school with braces. I knew having children would be expensive but I didn't consider that my children would need braces, glasses, or have severe allergies. And to think I have 6 and 8 more years to go before they are off to college and independent! Oh My - Oh My checkbook!

Correction: Brad reminded me that he won't have braces on for a few months, he will be wearing a palate expander first. And then he will only have braces on his top teeth.

Coming tomorrow: Pictures of Ashley with her new specs.

Comments

Popular posts from this blog

Living through Dance

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...

ALF vs COTA - Loosing Sleep

What would keep a person up past 3:30 am? Decisions... As most of you know we have been using ALF (American Liver Foundation) for Ashley's Liver Transplant Fund. However, in the past year, we have found that ALF is not offering us what we need among a few other reasons which I will not blog about. When we opened Ashley's account with ALF we did so quickly after the death of my dad during Christmas 2006 and New Year 2007, we did not have time to research the best fundraising organizations. There are so many organizations out there from ALF , COTA , NTAF . But because of my dad's untimely death and because his dying wish was that friends, family, etc. donate to Ashley to help defray our medical costs, the first organization that came to mind was the American Liver Foundation. After all, Ashley does have a liver disease. Now, both my husband and I are wondering if we should have used COTA. We have also thought and inquired about opening up a local trust fund for Ashley. Howeve...

Answers lead to more Questions

In great Ashley fashion, she did very well with her trip to the hospital and recovered well from the procedure. Right now, Ashley is off with her Grammie getting spoiled by shopping. With no one in the house but me and the pets, I am off to my own devices which usually means I have to much time to think, to research, to worry, to vent, to hope and to pray. Today Ashley had a broncioscope to find out why she has been coughing for six months. After getting up at 4:30 am and at the hospital at 6 am, the scope began at approximately 7:30 am. The procedure itself took less than 30 minutes. The outcome of the procedure left me with more questions than answers. We do know why Ashley is coughing, Ashley has a vocal cord dysfunction, enlarged adnenoids and tonsils. Finding out why Ashley is coughing is good news, however, we also learned that Ashley may have other issues involving her lungs. There was 60mL of fluid in her lungs. Some samples of her lungs were sent for a cell count, bacterial cu...