Update

We have been busy little bees around here. Addison had her ear tube surgery last Monday. She is such a trooper. Her appointment for the surgery was at 9:30 but we had to be there an hour earlier. We checked in and as soon as she saw the little bracelets you have to wear with all your information on it she asked if she was getting an IV. Once we assured her she wasn't she was okay. The surgery center has a large waiting area and I cannot believe the people that have the guts to eat and drink knowing surgery patients cannot eat or drink after midnight the night before. There is a separate children's area with a few toys and televisions to keep them entertained and one lady even had her child walking around the play area with a ziplock bag of strawberries. Another little boy was watching tv with a hand full of candy. Come on people! Addison was begging to eat and drink. They must have been waiting on a sibling having surgery or something. Anyways we finally get called into the preop room around 10 and Addison of course refused to put on the hospital gown so we changed her into her night gown. I could tell she was scared because she wouldn't let me put her down. They use a balloon for the kids to blow up and put them to sleep so before we kept encouraging her about how exciting it was she was going to get a balloon. She didn't even cry when they nurse took her back. Her surgery was around 10:30. Dr. Scallon removed the old tubes and said they were like concrete in there. She irragated with antibiotics and then placed new tubes. The nurse waited for Addison to wake up on her own and then came to get us. Addison wasn't even crying for me. Not a single tear for the whole surgery. I picked her up and gave her some jucie and I had bought her a bag of chips incase she was hungry. She was eating them like nothing had happened at all. I am so proud of her. We get in the car and start to leave and she shots "She forgot to check my ears!" I told her she checked them while you were sleeping.
Tuesday we had her weekly visit with the feeding specialist. Addison is doing much better with her chewing. The therapist said her tongue movement (moving food side to side and such) has improved greatly. Addison does good at the begining and then her chewing muscles get tired and she starts to swallow whole again. We just have to keep excercising those muscles to build them up.
On Wednesday I woke up not feeling great. By that night I had a full blown cold. Thursday we had to leave to head over to Ocean Springs. I had class for work Thursday and Friday night for our new electronic medical records training. The worst part of having a cold is the cough. Why does it get worse when you are trying to sleep? We went to 2 birthday parties on Saturday and a graduation party on Sunday. We headed home Sunday afternoon and I was so glad to get back in our normal routine. This week all we have going on as far as appointments is a therapy session this afternoon. Next week Addison has therapy, ENT follow up from surgery and allergy testing. The following week she has therapy and a GI follow up. Lets keep our fingers crossed things slow down for us. I could really use more weeks with her just having a therapy appointment.
Addison has still been vomit free since we started her on the Reglan. We have not decreased the dosage to once a day yet. I am going to call her GI today and give him an update and see if maybe we should try decreasing the dosage from 2 ml to 1ml twice a day before decreasing to 2ml once a day. I am definetly no doctor but the feeding specialist suggested we try doing that first. She had a little cold with me and one night she started coughing and me and Tre jumped out of the bed and Tre was yelling go get a towel. But no vomiting! It is so weird not having to wash our sheets multiple times a week. Just little things I am sure people take for granted that have made our lives much easier these last 3 weeks. My towel cabinet is overflowing with clean towels, they can hardly all fit. This is the longest she has ever been without vomiting in her entire life. I can't wait to see the difference in our electric bill from not constantly running the washer and dryer.
Addison still talks often about things she has been through. She mentions her scar and they cut her belly but when we ask why she just responds "I don't know." She plays doctor with us and tells us "Its going to be okay, It won't hurt, No more ouchies, I need to listen to your heart, Let me check your ears." She even puts on gloves and puts her fingers in our mouth like her therapist does to her to help her chew.  It makes me sad that she plays like that but that is all she knows. She asks for bandaids to put on her babydolls instead of like most kids I think they are giving babies bottles and stuff like that. She is so sweet and loving but she is developing an attitude and orders us around. We can't help but to laugh at her, she is so serious. She tells us come lay down right here and we have to lay in that certain spot for her to take care of us. Please continue to pray for her healing.

Such A Big Girl

Once again I appologize for not writing in so long. We started Addison on Reglan on Saturday May 5th. She was taking it 3 times a day. It is working! Addie has not vomited since Friday the 4th. Since she made it a full 7 days we decreased her dosage to only twice a day. If she makes it another week we will try decreasing to only once a day. We met with her feeding specialist and she would like to see Addie 2 times a week. We will have our normal visit on Tuesdays and if we already have a doctor appointment scheduled I will call and see if I can get Addie in the same day so we are not driving to Baton Rouge everyday. We have chewing exercises we do daily with her to teach her how to chew. She has 2 types of tubing she practices with. We saw Addie's ENT, Dr. Scallon last Thursday. Addie's tubes in her ears are still clogged and stuck. Her left ear infection is healed but she has fluid behind the right ear. Dr. Scallon said normally she can remove the tubes in her office but Addison's have dried up blood and are so "crusty" she did not feel comforable removing them. Addie's surgery is scheduled for next Monday morning. Since I was worried about Addie being scared having to wear a hospital gown, Dr. Scallon said to just leave her in her pajamas and if the nurses say something just to let them know she said it is okay. Dr. Scallon will remove the old tubes and irrigate to make sure there is no other old "junk" in her ears and then place new tubes in. This week will have therapy this afternoon and maybe again on Friday. Addie's preop appointment is scheduled for Friday afternoon with her pediatrician so we will see if we can get in with the therapist also. She is like a different person on the Reglan. I can just tell she feels so much better. The only problem is she cannot stay on the Reglan longer than 3 months. After talking to her therapist we are hoping after 3 months she will be chewing better and are fingers are crossed her stomach will have better motility by then.
We went to Gulf Shores Saturday and stayed the night to celebrate mothers day. It was very windy at the beach so we only stayed for 3 hours. We checked into the hotel and went to the pool. Addison just thinks she is such a big girl. I put arm floaties on her and she would tell me to leave her alone if I tried to hold her. She was jumping off the steps in the shallow end of the pool and "swimming" all by herself. She was giggling and so excited. When we walked into the hotel room for the first time she asked "Who is sick? Are we here to feel better?" She thought it was a hospital room. ;( She was a little hesitant at first but she eased up after a little while. We took her to a little amusement park and she loved riding all the kiddie rides. I just can't get over her independence. I want to protect her from everything and it is hard for me to let her do things by herself. I feel like she is so fragile but I have to learn to let go and let her be a kid. We have also started potty training again and she is getting better at it. Giving her stickers helps.

Fingers crossed

Addison saw the allergist/immunologist, Dr. McCormick Thursday morning. He thinks she just has a lot going on. He prescribed a daily nasal spray and inhaled steroid to help with Addie's allergies. She is scheduled for skin testing on June 7th. He said she has a hypersensitive gag reflex and any kind of sinus drainage or cough will cause her to vomit. When she vomited Wednesday evening it was food she had eaten over 7 hours earlier. She ended up vomiting twice on Wednesday and Thursday and once on Friday. Dr. McCormick's office is located next to Dr. Alberty's office so I stopped by after her appointment and spoke with Dr. Alberty's nurse. She added Addison to his schedule for Friday morning. We left the allergist appointment and went straight to the therapist appointment. The therapist had a meeting Tuesday and we had to reschedule her original appointment. The therapist said Addie's tounge is all over the place and suggested we feed her baby food. I left there and went to walmart and bought some but Addison would not eat it. She said it was yucky. Tre took off work to come with us to see Dr. Alberty. We asked for a fatty meal test where Addison would eat and they would watch the food go down instead of the swallow test because we know liquid is going down. He said there is no need to do the test that if she is vomiting food she ate 7 hours earlier he knows she has gastroparesis. We had to start her on Reglan to help the food move down her stomach. Reglan can cause twitching so if we notice any side effects we have to immediately give her benedryl and stop the medication. If the Reglan does not work we will have to try a medication given to paralyzed patients that helps relax their muscles. Addison has also lost 2 pounds, she now weighs 28 pounds. Dr. Alberty said he is not worried about her weight but to make sure she takes a vitamin each day. He said we do not have to deprive her of fruits because of the sugar free diet but not to give her any candy, cake, you know the junk food. Also he said whole milk is too fatty for her stomach to tolerate. We should buy 2% instead. (of course because I had just bought an almost $7 gallon the day before!) Also foods like cheese, peanut butter, and meat takes longer for the stomach to digest. I am so glad I can buy fruit again because she loves it. I will call Dr. Alberty in a week to give him an update and follow up in his office in 4 weeks. Addison will take the Reglan 3 times a day and if she goes 1 week without vomiting we can decrease the dosage to twice a day and if she goes another week without vomiting we can decrease to once a day. After time if she is still not vomiting we can wean her off of the prevacid. It would be like a dream come true to go weeks without vomiting. It just seems to good to be true. Right now it has only been around 30 hours but any day with less laundry to wash is a good day for us. I feel so bad for her. She apologizes for being sick. She will say things like "I am sorry for puking on the new blanket." She had 3 doctor's appointments and a therapy appointment this week. Some of her doctors are located near the Children's Hospital and when she saw the parking garage she said "Here we go. We are almost there mommy." When we were at the allergist's office, the nurse wanted her to lay down on the scale and get her height and weight at the same time and Addie was really scared. She started clinging to me and crying. I had to explain she is sick a lot and it is tramatic for her. The nurse asked if I could lay her down really fast. I replied no! Did she not just hear what I said about it being tramatic? I told her we are at the doctors weekly and I know how tall she is from being measured last week. I think she got the point then and let Addison sit on the scale to be weighed.
Since we had such a bad week we decided to take Addison to a local church fair last night. I was so surprised with her. She wanted to ride the rides all by herself. They were "kiddie" rides but still. She has never rode any like that and she just sat down like she was a pro. We had her face painted, a butterfly on her cheek and later she wanted to do it again. She picked out LSU for her other cheek. Yes she did pick it out all by herself. Later we saw a girl with a LSU shirt on and Addie started chanting LSU, LSU Geaux Tigers. She is so her father's child! There was a band playing and Addie was dancing with some other little girls and the band played the hokey pokey for them. She was so cute dancing. It is times like that we completely forget she is sick. I truly treasure memories when the smile on her face is priceless. She gets to be a normal kid.  Today we are celebrating my 29th birthday. Yes,  29 for the third year in a row. ;) She has been singing to me all morning. Thank you everyone for all your prayers and support. I hope this medicine is the answer.