Love For Ashley

We are finally back home, even if it just for a day. Tomorrow Ashley and I leave for Jacksonville, Florida so that she can attend her 2nd dance competition. She is so excited and has been practicing both her jazz routines everyday. I don't know where she gets the energy because I am exhausted just watching her. Ashley's Endoscope went well today. They found no varices, which is great considering she has portal hypertension, enlarged spleen and low platelets. The doctors biopsied her small intestine and her stomach to see if they can tell us why she has chronic diarreah. They also said that Ashley's stomach was odd, they aren't sure if it's because of the surgeries she has had or if it's just her anatomy changing because of her spleen. At any rate, they found it interesting and want to check that further. This is the first time since Ashley's birth that I have heard that Ashley's anatomy is different. The doctors want Ashley to have an upper GI St...

Here we are in Gainesville at the wonderful Holiday Inn Express. What a crazy day it has been. Starting with my silly cat screaming meows at me so I get up to put fresh food and water in his bowls. However, the little fur ball wasn't happy with just fresh food and water, he continued to meow so I got up and took a shower so much for an extra 30 minutes of sleep. You gotta love pets! After I woke myself up in a nice warm shower (it was cold in Central Florida this morning), I jumped on the kids beds to wake them up. Ashley, of course, didn't want to get up so Sarge, the dog, jumped on her bed to wake her up. Finally, the kids are up and getting dressed and the cat is still meowing and now following me around the house. Okay cat, I give up...what do you want! Right before we left the house, I decided I should change the cats litter box since I was going to be gone for two days. Low and behold, fresh cat poop on my living room floor. Note to self, if cat continues to meow after gi...

We just got back from Arnold Palmer Children's Hospital where Ashley had a repeat broncioscope. The scope went well and Ashley was a real trooper through the entire short procedure. The bronc showed that Ashley still has a little bit of an infection left but her lungs, trachea and esphagus have improved. We will continue to give her Prevacid once a day and she will be on the nebulizer once a day for the next 5 days. The doc believes 100% that Ashley has Gastro-esphageal Reflux. Ashley will see the pulmonologist again on March 26. Tomorrow, Ashley is back at school and will attend her Ballet class. Brad has Karate belt testing,I am off to work again and Joey's in North Carolina on business. Despite our abnormal lives with medical issues, we are back to some normalcy at least for a little while. I will update again on Wednesday after Ashley sees Dr. Gonzales out at Shands. She will have an ultrasound on Wednesday as well as a pre-op appointment. Early Thursday morning Ash...

In one of my previous post I told all of you that we would be pulling Ashley out of the Dance Company .The next day, I updated that post to tell you that Ashley will remain a member of the 5th Dimension Dance Company because someone close to our family has offered to pay to keep Ashley dancing. We have more good news. Friday night I took Brad to Karate and paid his Karate tuition. As I was handing the check over to the Sensei (Karate Instructor), I was told that they were putting Brad on a scholarship and tuition was free. Can you believe it, now we are saving money on Brad's Karate classes too. God is certainly looking out for us. Now if we can only get Ashley's dance studio to put her on a dance scholarship as well. That would save us about $200 a month. Even if they only scholarship her for the reminder of the year, we would be happy with any help. I can't believe our good fortune. Hopefully things will keep looking promising. We have had such bad luck over the l...

A friend of mine from our Liver Disease Support Group has been with me every step of the way with Ashley's illness. Peggy and I have known each other for what seems like decades since we met online, last year in California we met for the first time. Peg's daughter, Fiona, has the same liver disease as Ashley. Fiona is 19 years old. Fiona was my hope for Ashley when Ashley was first diagnosed. Fiona was doing well living with bilary atresia. Fiona's mother was also told that Fiona wouldn't live past her first birthday but she did. However, today the effects of biliary atresia are slowly sucking the life out of Fiona. Fiona's heart, lungs and just about everything else in her body is experiencing the complications of living for years with liver disease. Today, Fiona found out that if she has pulmonary hypertension that she would not qualify for a liver transplant. Pulmonary hypertension can be caused by end stage liver disease. Basically today, Fiona and Peggy were to...

Ashley's been doing well lately. The anti-reflux medication seems to be helping her cough. The cough isn't completely gone but it is so much better. In other words she isn't coughing as much. Right now the only concern I have is the size of Ashley's belly. I don't know if she is putting on extra weight or her spleen is getting bigger or maybe she is accummulating fluid in her belly called ascites. Her belly just seems to be changing size almost daily, one day it's fine or at least normal for her and the next day it's huge. Maybe I am just being paranoid, and Ashley is just gaining weight. Even though Ashley seems to be doing well it doesn't mean she is without complaints; she still complains about belly pain and headaches frequently. Again, this could be Ashley complaining to get attention or maybe there is somethings else there. I get a call from the school at least once or twice a week about these complaints, sometimes I just tell Ashley to go...

This weekend Ashley participated in her first ever dance competition sponsored by Hall of Fame Dance. Ashley was only in one number and she did pretty good except she messed up on a leg extension; she lost her balance but despite Ashley's error, Arrazando won the top honor for the day. And because it won top honors there will be a video of the number on the Hall of Fame website. As soon as the video is made available, I will place a link here so you can watch Ashley dance. Ashley will be busy at the end of this month. We have been busy making appoointments, scheduling medical procedures and shuffling doctors. We were really hoping that we could keep Ashley in Orlando for all of her upcoming procedures but with a dysfunctional G.I. Office in Orlando, we have decided to go to Shands in Gainesville for her procedures. On February 25, Ashley will have broncial scope in Orlando. We are hoping to see that her esophagus, trachea, etc. have heald. Since Ashley has been on her new a...