Hi everyone! I promise I have thought about updating the blog several times a day but I just have not had the time. In the last post I mentioned we were planning to take Addison to the aquarium in New Orleans. We did make it and we had a great time. Addison had her face painted like a blue and white butterfly. I did get teary eyed when we were looking at the frog exhibit. There was a window you could look in and see what goes on behind the scenes. There was some frogs in a fish tank and Addison kept asking if they were sick and what was wrong with them, were they there to feel better, etc. It just broke my heart. Here we are having a great time seeing all the animals and she is thinking about being sick. Her favorite part of the trip was the pequins which we had to visit twice and buy a stuffed pink penquin from the gift shop she named Pinky. She was even pushing Pinky in her stroller on the way to the IMAX theatre. She did not have the attention span to appreciate the IMAX 3D movie. She lasted about 3 minutes sitting in her chair and then stood the rest of the 39 minute film. The following weekend we went to the Baton Rouge Zoo. She is getting to be so much fun. I mean she is always fun, but she seems so grown up and her little personality is coming out. She has been doing awesome at potty training and only wears big girl panties at home unless she is sleeping.
Last week we started noticing her not eating and complaining of her stomach hurting. A few days later she started vomiting again. She vomited at least once a day Tuesday the 10th through Monday the 16th. She vomited twice Tuesday night in 2 hours so we gave her a dose of Reglan. We tried only giving her 2 doses a day but she continued to vomit and she started coughing too. Since she has a hypersensitive gag reflex her coughing made everything worse. We increased the dose to three times a day and it didn't help. We were only getting 2-3 hours of sleep a night because she would moan in pain and vomit usually twice during the night. We are used to the vomiting but not the moaning in pain. It looked like she was having sharp pains in her belly and she was holding her breath. I called her GI back and we scheduled an appointment. We saw him yesterday. Addison is 3 feet tall and weighs 31 pounds and 6 ounces. He said Reglan can cause stomach cramps if there is a blockage. Hearing those words come out his mouth, I had to distract myself and let Tre' do all the listening so I wouldn't lose it. I just can't bear the thought of her having another surgery so soon. He thinks she is just having really bad reflux. With gastroparesis it will come and go and since she has a slow emptying stomach it causes the reflux which causes the cough. We started her back on Prevacid and she will take it for at least a year. We are to watch her for a few days and let the Prevacid kick in. If she continues to vomit I have to call him back and she will need to do another upper GI series. All Tre' and I have ever known is having Addison sick so those few weeks she was not vomiting really made me realize what we are missing. It felt like a huge weight was lifted off our shoulders. I wasn't having to do laundry constantly, and not having to pack a few outfits everytime we leave the house. The worst part about her diagnosis is no one knows what will happen next. It is not a disease the doctor can tell us what to expect in 6 months, a year etc. Every patient is different and he doesn't know if this will be her whole life because she had the stricture for so long or if it will get better. The only thing is as she gets older she will be able to communicate and let us know what it is exactly that is hurting her. We have to continue with her diet, limited sugar (trying only to give her natural sugars), no fatty foods (like cheese, milk shakes, burgers), no acidic foods, (pizza, spaghetti, no carbonated drinks, orange juice). It is hard to feed her because I want to give her whatever she asks for becuase she hardly eats but we have to follow the rules as best we can. I cannot explain what we are feeling. I am so grateful for our few weeks of "healthy" Addison but I feel like we were being teased. Showing us what it is supposed to be like, how easy it was and now we are back to reality. Of course we are worried about her but the question are we doing everything we can for her is haunting us. Please continue to pray for Addison and guidance for her doctors.
