I am sad to post Addison's no vomiting streak of 12 days ended on Thursday. She only vomited once but it was a big one. She started coughing after she drank something and at first we thought she was catching a cold but then we realized it was just after she would drink. And the even weirder thing is I didn't hear her cough at all yesterday or today. I guess it was just time for her to empty her belly. I have noticed a difference in her not looking as swollen anymore. Her stomach is flat again and she even went back down to her normal size of diapers. She weighed 29.2 pounds at her appointment on Tuesday. This sugar free diet has really thrown us for a loop. Today I am feeling better about making the changes to her diet. I was so over whelmed at first. I was upset thinking about Halloween and Birthday parties but somehow I will figure it out so she can have as "normal" a childhood as possible. Next week we have zero doctor appointments. Can you believe it? When I turned my calendar to April and saw nothing wrote down for next week I couldn't believe my eyes. We have our fingers crossed it stays that way. We started decorating her stroller for the stroller contest at the March for Babies walk on April 28 in Diberville. I am dying to tell you how we are decorating it, but it is a surprise. I hope we win! As always please continue to pray for our family, Addison's health and guidance for her doctors.

Sugar Free :(

I have lots to write about today. We saw Dr. Alberty, Addie's GI, this afternoon. I described what happened to her while she was in the hospital and he believes she had aspiration pneumonia because she just had a tiny cold and her breathing got bad after she started vomiting. It has been 10 days since Addison last vomited. He believes the liquid Flagyl solved her problem. She had bacteria overgrowth. With that being said, she is high risk to keep getting it over and over again. Since she will always have poor motility it is easy for the food sitting there to cause bacteria overgrowth. Bacteria love sugar and it helps the bacteria grow. So you guessed it, Addison is now on a sugar free diet. Yes, this means even a sugar free Easter basket. My heart is breaking once again that she cannot have a normal life. I know she doesn't really know the difference but I do. When I ask her what the Easter bunny is bringing her she says smarties, tootsie rolls, suckers, a dog, and a bunny. I just don't want her to be disappointed when she sees her basket and those things are not in it, unless I can find some sugar free smarties which I highly doubt. Sugar free also means I have to make her Crystal Light drinks instead of the usual HiC, Capri Sun, apple juice, etc. Dr. Alberty even suggested I freeze the Crystal Light to make her popscicles. We did not have to schedule a follow up appointment. He simply stated he is sure he will see us again, he is just not sure when it will be. He is fine with her vomiting once here and there but if she starts back to 2-3 times a week I have to call him. He will most likely call in Flagyl again before trying anything else. Addison started sneezing Sunday evening and today her nose started running and now she is coughing and gagging. Knowing her I am sure she will not make it through the rest of the day without vomiting. Everytime she gets the smallest cold she vomits from the drainage or coughing gagging her.
The yard sale we had to benefit Addison and Evan was a huge success. We raised $2736 for us to split. I am very thankful to everyone that donated items to sell, donated their time to help us organize, set up, during the yard sale, and clean up. People continue to surprise me with their kindness. We had baked goods that were donated by Sandy Bosarge. Everything tasted amazing. She made the best cookies I have ever eaten. Jeremy Skupien donated sausage for us to grill and sell. He even arranged for Walmart to donate the buns. Thank you to Paul Morano, Karen Patrick, Angela Pendas, Courtney Walker, Michelle and Troy Robinson, Amanda Morgan, Bethany Butler, Rachael Hines, Lauren Braden, Sheri Gautreau, Jamie Farnham, Mary Heidingsfelder, Lauren Sonnier, Michael Johns, Speedy and Vickie Rettig, Jennifer and Jason Lapin and Charlotte Carnley. I am so sorry if I left anyone out. And thank you to my sister in law Cassie for watching Addison for us.  I made enough from the yard sale to pay Addison's surgeon in full and pay an extra $300 to the hospital from her Jaunary visit.
Now I am focusing on the upcoming dance on April 28th. We have a DJ that will be playing music and letting people sing karaoke. We will have a raffle and silent action. I am really excited about how much fun it will be. I am still selling t shirts as well.
Here is the link from the news interview we did to help out the Our Lady of the Lake Children's Hospital fishing tournament. http://www.abc26.com/videogallery/68983213/Community/olol-children's-hospital-bass-classic-tournament#pl-62806595 Tre was supossed to fish in the tournament but we needed his help at the yard sale. He has been fishing the tournament for several years since it is for such a great cause. Especially now we have had to use their services several times and he has seen how raising money for the hospital helps the children so much.

Busy little bees

I am sorry once again for not posting in a while. We picked up Addison's shoe inserts Friday afternoon. I had bought her 2 new pairs of shoes but they were both too small to fit the inserts and her feet in so I had to bring them back and I could only find her 1 pair. We had to go up an entire size and get the wider width. She looks like a clown with her little body and these big shoes. We have to start her out with only wearing them for 1 hour and then increase an hour every couple of days. We are to expect redness but if she starts to blister we have to go back and start all over again. Lets hope that doesn't happen. We wanted to get her excited about her new "magic" shoes so we all took baths and got dressed up to go out to eat. We called ahead for our table so we wouldn't have to wait long, you know how it is with a 2 year old! We get half way to the restuarant and Addison vomits all over her carseat and her brand new outfit. We had to turn around and give her another bath and Tre' had to hose down the carseat and take it completely apart so we could wash it in the washing machine. She still wanted to go out to eat so we took her and she ate 1/2 of my hamburger. She acted like she was starving. I try not to get aggervated because I know she cannot help it and it is not her fault but it is like we can't live normal lives. We just wanted to go out to celebrate her new shoes and she vomits. It is like we are scared to go anywhere incase she gets sick and makes a mess. Everytime she coughs or maybe she will just swallow something wrong, we just never know what will happen or cause her to vomit. It happens so fast it is hard to prevent the mess. So for last week she vomited a total of 2 times.
We have been having trouble with Addison taking her medications. Since she was in the hospital she has been refusing to take them and spitting them out. Even her Prevacid and flinstone vitamins which she normally asks to take, she will not take them. We follow up with Dr. Alberty her GI next Tuesday the 27th. I also need to make her an appointment with her ENT because her pediatricain told us in the hospital her tubes look really bad and she has been sticking her finger in her ears like she is trying to itch them. She was supossed to follow up late April but I might as well go ahead and get her in since they are bothering her so much.
Addison has finally stopped talking about the tube in her nose and belly and now just talks about her IVs. Mainly about how the last one she had was bleeding on her hand and fingers. She doesn't mention the breathing treatments anymore either. When she is talking about the IVs she even makes the noise the numbing medicine they use makes. She had a really bad nightmare last Friday night and woke up screaming "What happened to me" and begging for me to hold her.
Monday morning we were interviewed by a news station in New Orleans for the Children's Hospital's fishing tournament this coming weekend. They just asked questions about Addison's problems and filmed us playing with her, like pushing her in a swing and stuff like that. I will post a link to their website and the interview when it is emailed to me.
I just placed another order for t-shirts. I am so thankful to announce I have ordered over 400 shrits. They are not all sold yet and some were given away free for people helping with other fundraisers but can you believe 400 shirts? Wow! It makes me nervous about selling all of them because I have to pay for the shirt, taxes and shipping but my fingers are crossed I will sell all of them. The yard sale is this weekend in Ocean Springs. We will start selling at 8 am until 2 pm. We are looking for volunteers to help load, unload and set up all the donations at the location. Please contact me if you would like to help. My email address is southerngal05@cableone.net or on facebook. I dropped my phone tonight and busted the screen so I am unable to answer calls or text messages without risking slicing my fingers from the shattered glass. I am not sure when I will get it fixed. We just paid for Addison's shoes Friday and ordering the tshirts, raffle tickets, and dance tickets adds up quickly. I know I will be getting reimbursed soon by selling them but it is just until then it makes our finances short.
Tickets are available for purchasing for the dance on April 28, 2012. I am sure it will be a great time and I can't wait to see old friends I have lost touch with and for everyone to meet Addison. We will hold the drawings for the items on the raffle and have a silent auction. Once again thank you everyone for your continued support and prayers.

Feeling better

Addison has been doing better. She is still coughing but it gets better each day. She finally started eating Sunday and she really ate good yesterday. She did vomit yesterday morning but it was from coughing so much. Her pediatrician thinks she is vomiting from being sick, which I agree she could be. But what are we going to do each time she gets a cold? Before her surgery even the hiccups would make her vomit all night long. I do think she is better from the surgery because she is no longer vomiting old food. She has vomited 19 times since surgery. (that is what I have wrote down but I feel like I forgot to write some times down) I just still feel like something is not right. I did some researching and the Cincinnatti Children's Hospital Medical Center is ranked #1 for pediatric gastroenterolgoy. Childrens's Hospital Boston is ranked #2. I love Boston!! So now we have to decide what is our next step. I am waiting to see how she does once her cough is gone to make the final decision.
The yard sale is still scheduled for Saturday the 24th beginning at 8 am. We will be taking donations through Thursday the 22nd. Please if you have anything you want to donate let us know. We need grocery store bags, hangers, fold out tables and chairs, etc. We will be selling baked goods, drinks, and grilled sausage dogs so come eat lunch with us to help out these amazing fighters, Evan and Addison.

Home Sweet Home

Monday night Addison was up all night moaning in pain. She was breathing hard, like panting and she felt really hot, her cheeks were red and she was sweating but she only had a low grade fever. I gave her some milk and she vomited again Tuesday morning. I thought she just caught my cold I had over the weekend but she started breathing hard again so I made her an appointment with her pediatrician. I was already in tears worried sick about her and cried the whole way to her appointment. When is she going to get a break and enjoy being a kid? We get into the office and as soon as the pediatrician saw how Addie was breathing she immediately listened to her and sent us straight to get a chest xray. She said when the xray was done to come straight back to the room and not sit in her waiting room. The nurse and xray technicians kept having to give me tissues. We get the xray done and while we were waiting for the results Addison was given a breathing treatment. Her heartbeat was as fast as a newborn baby and her oxygen level was at 97. Dr. Guidroz said she had some stuff in her lungs and since she wasn't able to hold anything down we had to be admitted. We went straight over to the Children's Hospital.
As soon as we pulled into the parking garage Addison started saying things like no more ouchies and we are just here to play. That is what we had told her last week when we were there for the radiothon. The hospital raised $131,000 in 3 days from the radiothon. We checked in and I informed the nurse we have to have a child life specialist come with us for the IV because of her nightmares she has been having from our last hospital stay. She cried the whole time and she was bleeding a lot and that is all she talked about. We get back to the room because they try to do the scary things in a treatment room so the kids are not scared of their rooms, and her IV was still bleeding. Blood was running down her fingers. The nurse came in and fixed it and cleaned off her hand. A few minutes later the IV was leaking and Addison told us she was bleeding but it was just the IV fluids running down her fingers. I was thinking, please don't let it be like this the whole time again. She continued to vomit 2 more times that night and her medications had to be given through the IV since she was unable to keep anything down. She received breathing treatments every 6 hours so between getting all her meds and the treatments we got very little sleep. She was taking steroids and 2 antibiotics. Her nose was suctioned to test for RSV and it was negative. She had blood test done to check for bacteria to see if she had mycoplasma pneumonia and that was also negative. Her heart rate was over 160. That is fast but after her surgery it was between 180-200.
Dr. Guidroz also consulted Addie's GI because of her vomiting. Her GI was not on call so one of his partners came into see Addie. He said the results of ther swallow test from Monday were good. This was not surprising to us because they always are good, it is the food that has trouble not liquid. He said she has had a messed up stomach since before she was born and all of the stomach muscles work together so when you have surgery you interupt how things work and Addie has had 2 surgeries and is high risk for strictures and adhesions so she will always be an easy vomiter and have slow motility. He was basically saying this is going to be her life for us to accept it. But I just can't. I really want to start researching other doctors and I am even considering traveling to get another opinion. I know it will be expensive to travel but what would you do if she was your child. Would you accept this is her life even though she has been through so much already? She has now thrown up over 20 times since her surgery 7 weeks ago. I think about people that are bulimic and how their teeth rot and hair falls out and stuff like that. Is that going to happen to my Addie Grace? I know her esophogeal ulcers have to be back from all the vomiting.
Wednesday afternoon Addison's IV started irritating her and she started acting the same way as last time she was in the hospital. She was covering her arm up with the blanket and crying it was hurting. The doctor said we could take it out but if she didn't drink she would have to get another one. She really hasn't eaten a meal since Monday night. We ordered her chicken broth twice but she wouldn't even taste it. We ordered mashed potatoes, popscicles and a banana for her to try. She ate 2 very small bites of the banana and 4 sips of the popscicle we mashed up in a cup for her. We had maw maw Sheri and paw paw Pete bring in Mcdonald's but she wouldn't eat that either. She was coughing so bad last night she vomited again. Since she hadn't eaten and barely had anything to drink it was mostly phlegm that came out. Her oxygen level was 92-93 all night last night. Everytime she would wake up she would say "I am in the hospital." I could tell she wasn't feeling well because she wanted me to sleep in the bed with her and during the day she wouldn't let me in the bed. Maybe it was because her IV was bothering her earlier.
This morning we ordered her another banana, applesauce and toast. Again she didn't even take one bite. We offered her cheese its which has become her favorite snack. I think she ate 2 and just played with the rest. Dr. Guidroz came to visit and said we could go home because she didn't hear anymore crackles in her lungs. We asked what her diagnosis was and she said she could have aspiration pneumonia from vomiting or it could just be a nasty airway cold. She was treated like it was pneumonia. We were discharged with prescriptions for an inhaler and an antibiotic. She also has to continue to take the Flagyl she was already on for another few days even though it was first prescribed for only 10 days. Today the prescriptions were $80. That means since last Monday the 27th I have spent over $130 on antibiotic prescriptions. I am so thankful I was able to swap one of Addison's southernbelle t shirts for a 13 day supply of prevacid from a friend of mine whose baby's medication was changed to Zantac. That saved us $70.
Since we have been home we have tried to get Addie to eat a cheese quesidilla and french fries. She wouldn't eat it. We offered her chicken for dinner and she ate 3 bites. We are trying to get her to sleep now and she is wheezing so we had her take a puff from the inhaler. I hope we can get some rest tonight. Please continue to pray for her a speedy recovery and guidance for me and Tre' to make the right decisions concerning her care.
I came across this essay I wanted to post the other day too....
WELCOME TO HOLLAND By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I just love doing laundry!

Well today has been a bad day for Addison. We left the house at 6:30 for her 8:00 appointment for the upper GI series. I didn't know how bad the traffic would be and we had to be early to fill out the paperwork so it was an early morning for her. I was sick over the weekend and of course she has caught a cold from me. She was coughing this morning and vomited on the way to her appointment. I had packed some extra clothes incase she got sick during the test so I was able to go ahead and change her before we went in. She did awesome during the test. She drank the barium solution without fussing. The x-ray technicians were bragging on how well she did. As always, everywhere we go people tell us they wish all their patients act like she does. I was really dreading this test because of what happened during the last one but God heard my prayers and she was a big girl. They took a picture before she drank the solution and then every 15 minutes after for an hour and a half. she would tell the nice lady thank you after each x-ray. She is so sweet. It just breaks my heart how used to all this she is. She fell asleep on the way home and she woke up hungry so I fed her. She ate pretty good. She started coughing again and vomited about an hour after eating but it wasn't food, just bile and mucous from her sinus drainage. About 3 hours after that she told me she needed to go to the sink to throw up. She threw up all of her lunch then. She was wore out from that and tried to take a nap but she threw up 2 more times in the bed. It is so weird because you would think she would act sick from vomiting 5 times but she acts normal. I gave her a bath and one of my best friends Brooke came over with her daughter Brenna and Addie was ready to play. I guess she doesn't know any different because she has always thrown up so this is her normal. You normally associate vomiting with not feeling well so people are surprised when I say she threw up 5 times today and then she is running around the house being silly. It is a good thing I made some homemade laundry detergent! I wish I would have been making it this whole time, think of the money I would have saved.
Her appointment to pickup her "magic shoes" inserts is for Friday the 16th. She is still walking almost all of the time on her tippy toes. She even does it with her shoes on. I hope these inserts help her. I am sure they will, I just have to stay positive.
She did do something so funny today. I was cleaning the kitchen, picking up her toys and bringing to her bedroom. When I came out of her room I heard a voice coming from my phone. She had called Brooke and put it on speaker phone. At first I thought maybe Brooke had called and Addie answered it but Brooke said Addie called her. When Brooke said hello, Addie said Hi my name is Addie Gautreau. Hahaha She is so funny. I can't believe she even hit the button to put her on speaker. I always put Tre' and my parents on speaker so she can talk to them. She is so smart! She is so grown up since this last hospital stay. She isn't my little preemie baby anymore, she is my big girl.
We went to my friend Michelle's son Dylan's birthday party on Saturday. Normally I get anxiety when we are around big groups of people but I did good. I told myself I have to start getting out of the house and I can't keep holding her back from things normal children's parents don't think twice about. The party was at a skating rink and Addie got to put on the baby skates over her shoes. She loved it. I held both of her hands and walked with her on the rink. She had so much fun. She is such a people watcher. While Dylan was opening his presents and the kids were eating a little girl grabbed Addie's hand and took her to the bounce houses (I think that is what they are called. You know the blow up things kids jump in). Addie was scared at first but she went in and had the biggest smile on her face. It almost brought tears to my eyes seeing her so happy. For that moment I forgot about all her problems. I wish I had a camera to capture her face. I will never forget it. I am so glad I went. It was even her nap time and she did great. She fell right asleep in the car when we left but she lasted 2 hours at the party. You always want the best for your child and I just want mine to be pain free. I worry about her getting embarrassed when she goes to school and vomits. Kids are so mean and I know she will be made fun off. She is not even 2 1/2 years old and I am alreay thinking of these things.
Well lets make that 6 times today. As I am typing this she just told Tre' "I don't want to throw up" and then told him to take her to the sink. Please continue to pray for our family and Addison's doctors.

Expecting the worst

I don't know why somedays I am okay and others I am an emotional basket case. Maybe it is just exhaustion from stress, or the fact that Addison still doesn't sleep. We went to the radiothon this morning for the Children's hospital and it just reopened all those feelings of helplessness. As soon as we pulled into the parking garage Addison started saying she didn't want to go to the hospital, the IV is burning, the tube in her nose, etc. We just kept reassuring her we were going to play. She was clinging to us the whole time. Our interview was at 10, which was the DJs shift change so there was confusion and the new DJ called her Maddison and thought we were in the hosptial for a fever. I didn't get to tell Addison's story the way I had reherssed and to tell you the truth I don't even remember what I said. I have been feeling anger these last few days. I just don't understand why she is still sick after everything she has been through. Everyone I have spoke with, on facebook and the March of Dimes website, whose children had the same birth defect are all fine after their first surgery. I am still furious her pediatricians were not listening to me and even that she was discharged from the NICU without a GI referral. People make comments to me about how strong I am and they can't imagine what I am going through. Which really you can't! I don't consider myself strong. She is my daughter and I am just simply doing what any other mother would do in my situation. As I have said before, me and Tre' don't know what it is like to have a healthy child. I heard some other children's stories today and I was sad for them. Some parents were telling stories of their children passing away and I was grateful to still have Addison in our lives. And then part of me was jealous that their child was born healthy so at least they were not suffering their whole life like Addison has been. I know that sounds horrible, I am just having a bad week. I am exhausted from dealing with the t shirts. It is so much work keeping everything organized on top of taking care of Addison, her doctor appointments and working full time. I am so thankful to have sold so many shirts and it feels great to be able to send checks to her doctors. Sorting the shirts, contacting people to deliver them, delivering them, shipping them, etc. it really is a lot of work. I also ordered 5000 raffle tickets that had to be stapled together and I have to keep those organized too. Who took which ticket numbers, etc. I guess I am just down in the dumps this week. I feel like the bills are never going to stop so what is the point of doing all this fundraising? Part of me wants to delete some of the things I have said but this is our reality and if I am going to keep blogging I might as well be honest about it. I know people have it much worse than Addison does and I am so very thankful Addison can at least communicate with us.
 I am just dreading her upper GI series test on Monday morning. Her GI wanted it done this week but she can't eat or drink after midnight the night before and all the imaging center had was a 10 appointment and I am not making her wait that long since the test can take over 2 hours. I know she will be scared and she is not going to want to drink the nasty stuff. Just like going to the hospital today, this test is going to bring back all those memories for her as well as for me. She vomited during her last swallow test so I am worried about that too. She wasn't able to lie flat during the last test either. It feels like I am so used to getting bad news I just expect something to be wrong. Like when we checked into the hospital and had that swallow test it didn't show anything to be wrong and as soon as the surgeon cut her he said it was a very obvious stricture so what is the point of this swallow test? We know she never had a problem with liquid moving through her stomach. Maybe I should have just took the 10 appointment so I don't have to stress about it all weekend long.
We were also asked today by the children's hospital to be filmed in the boat they are giving away in thier Dreams Come True Children's Miracle Network fishing tournament. I told him we would do it but now I am having second thoughts about it because we are so busy. Tre' can't take off from work so it will be all on me. We would just be filmed taking the boat out and letting Addison hold a fishing pole, etc. It is for thier commercials. It takes up practically our whole day for an appointment. We have to get ready, leave an hour early to drive to Baton Rouge, then wait, then drive back home. Addison is usually so wore out she will sleep on the way home and that ruins our schedule for the rest of the day. I know with her having that test Monday that will make me have to stay up and work that night so doing it over again on Tuesday, I will be exhausted. But then I want her to be on tv! Now that she is getting all this press maybe I should add her autograph to the raffle!
She hasn't vomited since last Friday so I am just expecting it any day now. Her belly was poking out pretty good tonight so it looks as if it is time. She keeps telling us she is going to puke and I tell her no, keep it in. Sometimes when she says that she just ends up with the hiccups but I can always see her trying to keep it all down. It is hard to describe but she moves her mouth a lot. When she was a baby her doctor called it silent reflux. I have to get back to work so, as always thank you for your continued support and prayers.