Bieber Fever

Hi everyone. I haven't posted in a while because I was debating on deleting the blog. I am still very upset about someone using Addison's story to profit for themselves. Lots of people have been asking about Addie so I decided to continue to post. On June 9th I decreased the dosage of Reglan to once a day. On June 12th we had an appointment with Addison's GI, Dr. Alberty. He told me to go ahead and stop the medication and decrease her Prevacid to once a day. He was extremely happy about Addie's weight gain. She was 28 pounds at her last appointment 5 weeks ago and now weighs 31 pounds. We did not schedule a follow up appointment, he just told me to call when we need him. He knows we will be back, just not when. He said gastroparesis can come and go just to keep the Reglan filled and start it back when we need to. We also have to control her diet. No cheese or peanut butter because those are hard for the stomach to digest. She absolutely loves cheese. When I open the refrigerator she will open the drawer and get cheese out by herself. Sometimes while grocery shopping she asks for cheese to eat while we shop. She is allowed to have some sugars. Mostly natural sugars found in fruits and veggies.  He said I don't have to read every single label just to completely avoid candy, cookies, fruit drinks, and to limit what we can. Her last dose of Reglan was on the 13th and so far she has done great.
Addison is still having weekly sessions with a feeding specialist. I have been putting lemon juice on her foods and she loves it. I can't explain it. It is as if she is tasting food for the first time. She will say "More lemon please." You can hear her trying to suck the lemon off the food, even on apples. She is chewing much better. She gets excited and wants to eat fast and we have to remind her to chew. Once we remind her she will start chewing but she is in the habit of stuffing her mouth so full it is like she can't wait to put another piece of food in. We just keep working with her, telling her to finish chewing her first piece and then she can have another piece. Sometimes she gets upset and she will chew once or twice and then swallow whole so she can have the other piece.
 Over the last few weeks our lives have completely changed. I am washing laundry because it needs to be washed, not because she vomited on it. Our carpets are actually dirty, and not shampooed. It seems unreal to me, like it is too good to be true. I didn't realize how badly I needed this break, not just physically but emotionaly as well. I just want to make everything better for her and erase all her memories from the hospital. She associates everything with being sick. She has came down with Bieber Fever as well as all the other young girls in the world. She says Justin Bieber is her boyfriend and he is coming over for dinner. She wants a Justin birthday party instead of Minnie Mouse. Justin has been wearing gloves on both his hands lately when he is performing and Addison said "Justin has 2 IVs." Tuesday when I put her in the car seat to go to therapy she told me not to hit her scar that Justin would be mad. I apologized but I was laughing on the inside. I even made my first purchase on ITunes to buy his music. I know, I know! I am 31 and have never bought anything on ITunes and the first songs are Justin Bieber for my 2 year old. She loves him! I want to buy her a Justin t shirt but I am scared that is all she will want to wear. I can't explain how amazing it is to see her feeling better and enjoying life. We plan on bringing her to the New Orleans Aquarium this weekend for the first time. She keeps asking if Justin is coming with us. Please continue to pray for Addison. I cannot thank you all enough. Our prayers are being answered right infront of my eyes every single time I see her smile.

I Spoke Too Soon

Right after I posted last week Addison vomited after lunch. It was just one time and it had been 3 weeks since the last time. She had eaten peaches and her feeding therapist said that is a hard food for her to chew. She propably swallowed the pieces whole. If you think about it peaches are slippery and trying to hold them between your molars can be hard for someone who is learning to chew. She has not vomited since then. She is chewing better now but still shoving multiple pieces of food in her mouth at once. We were instructed to season her food with lemon and lime to wake up the senses in her mouth. She shoves food in because she is more aware when she has a mouth full. We followed up with her ENT Tuesday afternoon and everything looks great from her surgery a few weeks ago. We don't have to follow up with her for 6 months. We saw her allergist/immunologist on Thursday for allergy testing. Addison did great, not a single tear was shed. There were kids screaming all around us in the surrounding rooms and Addie just counted along with the nurse. She was tested against 40 things. She only tested positive for Birch and Ash trees. What a relief! And then again we were not given any answers as to why she vomits. It is looking like her stomach just works that slow but I don't understand why the food doesn't just sit there. What makes it come up?  Addison will continue to take the daily inhaled steroid to prevent wheezing and follow up with allergist/immunologist in 3 months. We follow up with GI on this coming Tuesday morning. She weighed a whooping 31 pounds on Thursday's appointment and was 35.83 inches tall. From 3 to 31 pounds!!! So proud of her, this is the most she has ever weighed. She is still going to daycare and she loves it. When I pick her up for her appointments on the drive home she asks to go back to school instead of home. This coming week we only have 2 appointments so we will get a little break.Thank you everyone for all your continued support and prayers.