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Showing posts from January, 2008

Simple Kindness is Humbling

Since we found out that Ashley will indeed need a liver transplant sooner rather than never, we have been blessed with the help and generosity of others. It's amazing how many people care about Ashley, care about us. When we started fundraising for Ashley we were certain that not many people would donate. However, with the help of my dad's cousin in California, Ashley transplant fund with the American Liver Foundation got off to a good start. We still haven't reached our goal of $75,000 with that fund but $20,000 is a good start. Originally, we planned to just raise funds for Ashley's liver transplant but recently we have discovered that we need to raise funds to cover her current medical costs. It's these costs that cause our finances to be tight now. Therefore, we started to think about ways to make money now and contribute it to Ashley's health care now. The Cookbook Fundraiser is just one of the ideas we have to help us with the current medical bills and hea

Prevacid - Ashley's Newest Medicine

Yesterday, I picked up Ashley's new prescription drug, Prevacid. Prevacid should help Ashley with her reflux, Gastroesophageal Reflux Disease. With the cost of this medication it better cure her of this disease. The medication with insurance will cost us $70 a month; that's $840 a year. People that don't have insurance, Prevacid would cost them about $380 a month. The cost of prescription drugs is ridiculous. Prevacid is now just one of 5 medications that Ashley is taking everyday. She is also on a nebulizer (for her lungs), Atrovent (for her sinuses), Actigall (for her liver) and an antibiotic (because of her low white blood cell count and platelet count). One of these days I will sit down and add up our monthly prescription drug expenses. Of course, that monthly expense will not only include Ashley's 5 medicines but it will include my 3 prescriptions; two for high blood pressure and one for severe allergies and it will include Brad's prescription for his allergies

And Ashley has....

Reflux, a severe case of GERD. Ashley saw her Pulmonologist and he strongly believes she has reflux but he also says she has some other issues yet to be diagnosed. We are putting off the adenoidectomy and tonsilectomy until after the repeat broncioscope and the Endoscope which should be scheduled sometime after January 28. We are meeting with a new local GI doc after January 28, at that appointment we will schedule the two scopes. Once the scope results are in, we will discuss surgery. Right now, Ashley's liver enzymes are normal but her Total Bili is going up but again still in normal range. Her platelets are at 90,000 (normal is between 155 to 450). Her CO2 level is low but not alarmingly low, her BUN/Creat Ratio is high, her WBC count is low, her HCT low, and Lymphs absolute is low. She also some other values that are abnormal but I have no clue what the values mean. Her C4 Complement is low, her Anton Gap is high. I need to Google those two values to define them. I am su

Cookbook Deadline Extended

We have decided to extend the cookbook deadline a few more weeks. By extending the deadline we can accept more recipes and make a bigger and better cookbook. Currently, we have about 200 recipes; we would like to have 400 recipes. The deadline has been extended to January 21 so you have time to submit more recipes. Specific Recipes Needed 1. Breads 2. Cookies 3. Seafood - specifically fish, shrimp, etc. 4. Sandwiches 5. Dressings, Marinades, Gravy's and other condiment recipes. 6. Punches, drinks, cocktails, etc. Please submit your recipe today by using the link and log in information found at the right. Thank you!

Coming Up for Ashley

It's been a few weeks since I updated you all on what is going on with Ashley's latest health concerns so I thought I'd let you know what is next for Miss Ashley. On January 21, Ashley will see Dr. Livingston her pulmonologist. At this visit we will go over her tests results from her Broncioscope. We will also discuss and schedule a repeat Broncioscope. At the same time the Broncioscope is performed Ashley will have a Endoscope performed by Dr. Milov. Dr. Milov is a gastroenterlogist (GI) in Orlando that to be Dr. Andres partner (Ashley's current GI). Dr. Milov is performing the scope so we can keep Ashley in Orlando and not have to drive to Shands in Gainesville. For the Bronc we are hoping to see some changes in Ashley's trachea and lungs, in other words we are hoping that we don't see an infection. We are also hoping that the Bronc will let us know how her tonsils and adenoids are doing. The plan is still to have the tonsils and adenoids removed. Dr Livingsto

Something to Tempt your Taste Buds

I thought I'd share with you the cover of Ashley's New Cookbook. Thank you to my friend Toni Autrey for creating such a beautiful cover. And below is a one of the recipes that will be found in the Love for Ashley Cookbook. CHICKEN MARSALA 2 T flour Salt - pepper to taste 10 oz flattened chicken breasts 1 large clove garlic 2 tsp olive oil 1/4 cup plus 2 T marsala wine Mix flour, salt and pepper. Coat washed and dried chicken with flour mixture; split garlic clove in half. Heal small non stick saute pan until hot. Reduce heat to Med and add oil, chicken and garlic. Saute chicken until golden brown, turn and brown on second side. When garlic becomes very brown , rub it along chicken and leave it there, be sure it does not burn. Add 1/4 C marsala; reduce heat to low and spoon liquid over chicken breast. Remove chicken from pan and stir in remaining 2 T marsala to pick up any brown bits and pour over chicken. By Aunt Francine Balbuze, Charlotte, North Carolina

Back to the Medical Grindstone

It's a new year with the same old medical issues. With the new cocktail of medicines that Ashley has been on for the last month, we expected to see some change. However, there really hasn't been any significant change; she isn't worse but she isn't better either. Her cough is still there and she is still coughing just as frequently. While we were in Mobile for Christmas, we were able to watch Ashley more and really see her symptoms. She is coughing at night but it's a different type of cough, mostly she wakes herself up takes a deep breath and goes back to sleep. Sometimes she wakes up and takes a walk; we found her sleeping in various places in my mom's house. Maybe she has sleep apnea, maybe she is sleep walking, maybe it is something else that we will never know about. Anyway, we talked to Ashley's pulmonologist over the Christmas break. He agreed with us regarding the ENT assessment of Ashley's cough. He agrees that it is not a sinus infection but s