Update

Addison was sick for several weeks and it is hard for me to find time to update her blog. She continued to cough and vomit every few days for about 5 weeks. We just continued to give her breathing treatments, daily inhaler, and allegra for allergies. Then she caught a stomach virus and also had diarrhea. I took her to the doctor twice in 3 days and she had to get an IV for fluids because she was dehydrated. Today makes 7 days without any vomiting. I spoke to Dr. Black (GI in Memphis) and he said anytime she gets a stomach virus it will be harder on her than on you or me. He said it may even last her weeks. She will have a chest xray next week to check on her right lung.
We have been busy getting ready for Christmas. Addison has an elf on the shelf she named Elfina. She loves waking up every morning to see what Elfina has been doing the night before. I have been picking up donations for the Children's Hospital. Addison says "I will give the sick kids a toy and make them feel better. Then they get to go home." We are excited to give back. Addison's commercial is also airing now until Christmas. This weekend we are going to see Disney on Ice in Biloxi and a Christmas parade in Gonzales. Thanks again for all your support and prayers.

Pay It Forward

I am so thankful for Addison's 8 weeks with no vomiting. She developed a cough and vomited 3 times last week. She started out with a fever. The next day she had a rash all over her body and then the cough started. After a visit with her pediatrician she confirmed it was a viral rash. During our visit Addison was coughing and gagging. Dr. Guidroz said she was about to start crying because she thought Addison was going to vomit in her office. She didn't start until we made it home. She vomited twice on Thursday and once on Friday. We began breathing treatments and she has slowly gotten better. I have been doing better also. I started back at Jazzercise and have not had a single anxiety attack in a month.
Addison has had quite a year. So far she has been hospitalized 3 times, 2 EGDs, 2 surgeries, 4 Upper GI series, 1 swallow study, 5 chest xrays, 1 PH Probe study, 36 therapy sessions, 92 doctor appointments and she has vomited 78 times. I am so thankful for all of your support and prayers. Now that things have slowed down for us I really want to pay it forward over the holidays. I would like to donate toys to the Child Life Specialists at Our Lady of the Lake Children's Hospital. The Child Life Specialists checked on Addison at least once a day during her admissions and went with her to preop for surgery. They brought her barbies, dress up clothes, colors and coloring books, paint and paint brushes, bubbles, etc. Bubbles are used to prevent children from getting pneumonia from laying in bed after a surgery. It is important for them to blow. When we were able to finally give Addison a bath several days after surgery they brought her a princess crown, wand, purse, jewelry and a tutu. I will never forget her laying in bed in pain but she managed to have a smile on her face. I would like to donate new toys to the hospital the week before Christmas. I am asking you to buy an extra gift for a sick child who will be spending the holidays in the hospital. Coloring books, colors, puzzles, barbies, babydolls, dress up clothes, bubbles, pillow pets, board games, cars, action figures, card games, etc. Please contact me to pick up your donation to be made in Addison's name. My number is 225-717-6102, email jrgautreau@yahoo.com or on facebook.

Party Time!

Addison has not vomited in 6 1/2 weeks!! I have not posted in a while because we have been busy celebrating. I like to take advantage of "healthy time." We celebrated her 3rd Birthday with 2 parties. It was fun watching her open her presents. She was excited about every gift. We bought her a small trampoline. We had been thinking about getting one for a while and her therapist suggested she needed one for her sensory problems. I cannot wait until Christmas so we can spoil her again. She weighed 32 pounds and 8 ounces at her wellness check up and she is 37 1/2 inches tall. Her weight is a big difference since she was 25 pounds in January. Dr. Guidroz (pediatrician) will do another chest xray in December to follow up on her lung issues. She is only currently taking QVAR, her daily inhaler. It just blows my mind that not even 4 weeks ago we were preparing for another surgery. Guess what else!!! She is potty trained and even wears big girl panties while she is sleeping. We have been on lots of outings the last few weeks. We have made trips to parks and Seward Farms. We went on a boat ride and did a little fishing. Addison mostly ate her doritos and danced to the radio. We even took her to the movies to see Finding Nemo in 3D but she only made it through the previews and about 10 minutes of the movie before we gave up and left. She does not have the attention span to sit and watch a movie. She was walking back and forth in the isle and asked to go to the bathroom 4 times in 10 minutes. We left and went to the mall for her to ride the carosel and the train. This weekend we will go to the Baton Rouge Zoo for Boo at the Zoo. Addison will be dressed as Tinker Bell. Last year I stocked up on clearance Halloween costumes and gave them to her for Christmas as dress up clothes. I think I paid $2.90 for the costume, shoes and matching wings. Go me! For trick or treating she will be a clown. The cutest clown you have ever seen because Maw Maw Vickie made her costume again this year. She has been playing pretend play practicing trick or treating. She makes me sit on the couch and handout candy to her and Tre. Then she takes a turn handing out the candy to us. When I asked her for a second piece, she said "No, that is for the other kids." She loves going to her dance class. She tries to teach me what to do, like pointing my toes, heel then step, and shuffling. I don't know why but I always get teary eyed waiting in the waiting room while she is in class. I guess I am just so proud of her. She is stronger than I will ever be. Every now and then she will bring up the tube in her nose and ask why it was there. She asks about once a week so nothing compared to how she asked after her surgery in January. I had mentioned she clawed my arm while she was getting her IV, it ended up scaring. I can't complain, after all it takes more than all your fingers and toes to count all of Addison's scars. I have been feeling better too. My depression and anxiety have gotten better in the last 2 weeks. I started going back to Jazzercise and I have already lost 4 pounds. I am concentrating better and finally feel like I can take a deep breath. Please continue to pray for Addison's health. Thank you for all your prayers because I know the only explaination for her recent "healthy time" is God.

A day of news

We enjoyed our time in Memphis and are settling back into our routine. I have lots to update so I will start from the beginning. We checked into the LeBonheur's Children's Hospital at 6:30 am on Tuesday the 18th. As soon as we walked into her room she picked up the phone and told me to call the eatman. She wanted me to order her breakfast. Poor thing knows too much about being in the hospital. Addison was given an IV. Of course she hates them and clawed my arm trying to fight the nurse from giving it to her. At first the resident doctor thought Addie could not eat until after the probe was inserted so fluids were started. After about 5 minutes they were stopped and she was allowed to eat until an hour before the probe was inserted. The probe was inserted, Addison fought a little and it came out but after another try it was inserted fully. A chest xray was done to check it's placement. The probe was taped to her face and on her back. She didn't complain. She just asked what it was and why was it in her nose. She told us she could not snore because of the tube in her nose and only said it hurt once. The hard part was keeping her from pulling the probe out. She is not "sick" so we kept having to remind her to be careful and not move to fast or step on the cords. It was removed after 24 hours and we were discharged. During our stay a pulmonologist was consulted. She basically explained to us the linear band of fibrosis was caused from the aspiration pneumonia. We are to be sure and give Addison a Flu shot every year and to keep her from getting sick as much as we can. Being born premature she had underdeveloped lungs anyway.
We picked up her 2nd pair of orthotics yesterday. They should last a complete year. Today we met with her therapist. Addison is showing signs of sensory processing disorder. We already have an appointment with her pediatrician on Thursday. We will discuss having her tested then. Dr. Black's nurse called and said the PH probe results were negative and did not show any signs of reflux. I just don't understand. She just had an EGD last month and it showed reflux and esophageal ulcers. Her 2 GI doctors both said she needed the Nissen Fundoplication surgery and now she doesn't have any reflux? Thank goodness we took her to see Dr. Black. While we where in Memphis, her surgeon called to schedule the surgery. She has not vomited in 3 1/2 weeks. The only explaination we have right now is the power of prayer. It just seems to good to be true. Everytime she makes a noise, like she is going to cough or gets choked I think here it comes. I asked the nurse if I still need to give her prevacid and she was going to ask and call me back but I haven't heard from her yet.
Thank you for all your support and prayers.

Hello from Memphis!

Let me start with good news first. It has been a full 2 weeks since Addison last vomited. She loved her first dance class. She didn't even cry when I walked out of the room. I did get teary eyed because she was acting so grown up. It was just nice to see her so happy and like a normal kid. We headed to Ocean Springs after dinner Tuesday night. We arrived around 11 pm. Woke up, showered and loaded up the car by 10 the next morning. We made the trip in 7 hours. We had to make a handful of stops because Addison would ask for a break from her car seat. We checked into the hotel and took her swimming in the pool. Next we went across the street to eat dinner at Chik fil a. She loves playing there and actually eats the grilled nuggets. She hates fried nuggets and will peel the fried parts off. Her appointment with Dr. Black was at 10 today.We had about a 30 minute wait in the room. Addison was playing doctor with us. She is so smart. She was even telling me to put the little black thingy on the thing they use to look in your ears and told me to say ahhh when she grabbed the light used to look down your throat. She always puts gloves on first too. I am telling you my little girl is going to change the world. Dr. Black entered the room and had already reviewed the records we faxed over. He does not agree with the Nissen Fundoplication surgery unless it is a life threatening issue. He said the surgery can cause problems also. He needs to know how bad her reflux is. Addison will be admitted to the Le Bonheur Children's Hospital on Tuesday afternoon. She has to be off of her Prevacid for at least 3 days before she has a PH Probe test. A probe will be inserted through her nose down her esophagus to measure how much and how often she has reflux for 24 hours. She will also have a consult with pulmonology about her lung issues during her hospital stay. We were given a referral to the FedEx Family House which is located across the street fom the hospital. They only have an opening for us to stay tonight. The Forest Spence Fund had dinner brought in for all the house guests. They even played with Addison and had an arts and crafts table set up. Besides a baby Addison is the youngest child here today. They offered to pay for our hotel stay Friday through Monday. I am so very thankful for this organization. Tre' missed a week of work during the hurricane and Addison's $400 orthotics, it has been a rough month. I only packed for a 2 day stay so we had to head to my favorite place, Target, and buy diapers, wipes, shampoo, apple juice, milk, and snacks for Addison. There is a washer and dryer here so we were able to wash our clothes. This house is such a blessing. I feel like my world has been turned upside down. I don't know why I am even feeling like this. Addison has always been sick so this is nothing unusal. I guess just being away from home. Mom is trying to get off work to stay with me but she may have to leave Sunday. If so Tre will head up Sunday evening and will have to miss a week of work again. I just don't understand how people do it. These unexpected medical expenses are killing us. But as always I trust in God and know he will provide. I pray one day we will be on the other side and can offer help to a family in need. I would love to be able to pay it forward. I will update as often as I can. Please keep us in your prayers.

Memphis Bound

Hi! We survived Hurricane Isaac. Our yard was flooded for a few days but Addison only vomited twice during what felt like was the longest storm ever. She hasn't vomited in 11 days. Last week she had her swallow study done. I have not heard from her doctor yet but the speech pathologist said Addison swallows normally without aspirating. She kept asking me what genetic testing Addison has had done because usually atresia birth defects come with other defects also. Addison has only been tested for Downs Syndrome and Cystic Fibrosis. She will have therapy tomorrow morning and her first tap and ballet class in the afternoon. After dance we will head to Ocean Springs for the night. We will leave Wednesday with Maw Maw Vickie to head to Memphis for Addison's appointment Thursday morning with Dr. Black. I am so frustrated! I requested all of Addison's records from all of her doctors on 7/27/12. I had to pay for some before they could be sent but when I was getting everything ready this weekend I noticed I have not received the correct records. Her GI and allergist are in the same office and all I received was the allergists records even though I paid for the GI records too. One of her pediatricians only sent her 9 and 12 month check up notes instead of all the records, she had seen her from 6 weeks old to 1 year. I feel like every which way we turn nothing is working out for us. I will just have to bring what I have and sign a release from Dr. Black's office so he can get the rest. I have been having a hard time with my depression and anxiety. On Friday I layed Addison down for her nap in my old bedroom at mom's house. I went in the kitchen to work. I started thinking I would not be able to hear her if she started choking or vomiting and I had an anxiety attack. My heart was racing, I could not take a deep breath or swallow. I hate that we never know what will happen one minute to the next. Later that night she was having sleep apnea and I was scared to fall asleep. I counted 8 mississippis during one pause. Please pray we get some answers from this doctor. Why has she been 11 days without vomiting? I feel like God is telling us not to do the surgery. I added a few recent pictures of Addison from this summer. I will update again this weekend when we return home.

Go Away Isaac!

In my last post I mentioned our week had been awful. It continues to still be getting worse. Thursday evening I received a call from Addison's pediatrician. I cannot say enough about this woman. The fact that she took the time to call me instead of having her nurse call. She had received the full report from Addison's chest xray. It showed a linear band of fibrosis in her right lung. She said we will know more after the swallow study results are in but if Addison is drinking and aspirating the worst case scenario will be feeding her through a g tube. Addison will be referred to a pulmonologist to address her lung. I called Dr. McNair's office again Friday morning and asked to speak to an office manager since my calls were still not being returned. I was put through to a nurse named Christine and she apologized. I told her about the latest news and she spoke with Dr. McNair and he agrees Addison needs surgery. I got an appointment with Dr. Black in Tennessee for 9/13. He is a pediatric GI and will be our 3rd opinion. Her swallow study is also scheduled for 9/13, I called to have it rescheduled and no one returned my call. We will meet with the surgeon tomorrow at 2. I will not schedule the surgery until after our trip to see Dr. Black. Right now we are stressing about Hurricane Isaac. I worry if Addison starts vomiting we cannot be without power. I need to be able to wash clothes and give her baths. Also she is on breathing treatments and I worry about her getting hot and making her cough worse. Never a dull moment in our house. I will update again tomorrow with the details from the surgeon. As always thank you for your prayers.

Surgery

This week has been hell for us. I already posted Monday so I will just touch on the recent events. Addison vomited a total of 5 times Monday and once Tuesday. Tuesday morning at 8:30 I called and left a message on Dr. McNair's nurse's voicemail letting him know about her abnormal chest xray, asking for the results of the Upper GI and biopsies from the EGD and a detailed list of the days and times Addison has vomited on the new medicine. I didn't hear back from her so I called Dr. Alberty (Pediatric GI in Baton Rouge) and Addison was given an appointment for 10:15 on Wednesday. We went to her therapy appointment and Mrs. Margaret said until the doctors figure out what is causing the vomiting her work won't help Addison. If she is still associating food with pain nothing Margaret can do with her will help. She said she can do whatever needs to be done, if she needs to help with thickening her meals, brushing her teeth, all these things she can do but she cannot teach her to deal with the pain. We woke up a few minutes after 7 and I received a text from a dear friend that three 18 wheelers had flipped and leaked at the exit I take to get to the doctor's building and the interstate was shut down. I scrambled to get us out of the house. It seems like when you are in a hurry everything takes longer. I had to give Addison her meds and breathing treatment. We walked out the door a few minutes before 8:30. I signed in for her 10:15 appointment at 10:54. Addison was very upset about being in the car so long. She weighed 31.6 pounds with a dirty diaper and shoes on. Dr. Alberty spent around 40 mintues in the room with me. He went through her entire chart, and her records from the hospital. He said he thinks it was a motility problem but the reglan fixed that. Now neither the Reglan or Domperidone is helping her so this tells him it is something else. He ordered a test that will time how long the food actually sits in her stomach. His nurse will schedule it and call me with the appointment. He believes Addison needs Nissen Fundoplication surgery and referred us back to Dr. Lopoo (pediatric surgeon). Her appointment with him is on Monday afternoon. This will be her 6th surgery, 3rd since January. I googled the surgery and everything it talks about Addison has. She has ulcers, strictures, hiatel hernia, and reflux. If you are interested in reading about it here is a link. http://www.umm.edu/general_surgery/nissen_fundo.htm Then I read about the diet she will have after surgery, here is the link. http://www.upmc.com/patients-visitors/education/nutrition/Pages/diet-after-nissen-fundoplication-surgery.aspx How can I deny my child chocolate milk? It's her favorite and how we hide her medicine in her sippy cups. He agreed with the test her pediatrician ordered to make sure she is not aspirating when she drinks. I told him about all the medical bills, constant doctor appointments and we keep getting denied for Medicaid so he had a social worker come talk to me. She said we need to file for SSI and even if we do not receive income each month from SSI since we both work, Addison needs to be declared disabled. A few hours later she called me on a 3 way call with the SSI office and I set up an appointment for August 30th to file for benefits. Once she is declared disabled she will qualify for Disability Mediciad. I had a breakdown in the office as soon as I heard surgery but now that I have read about it I am worse. It is seriously taking everything I have just to get out of bed in the mornings. Addison still doesn't sleep through the night so by the time I finally fall asleep she is waking up and then I can't go back to sleep because all I do is worry. I have several questions for the surgeon. If she is unable to vomit, what about when she gets pregnant and has morning sickness, will she be able to even have kids, what if she is a sneaky teenager and gets drunk, will she get acohol poisoning. I know I can drill it into her head she cannot drink alcohol but you know we didn't always listen to our parents and all I can picture is her drunk somewhere and me not being there to help her. The diet restricitions are numerous, no fresh fruits or vegetables, no carbonated drinks, no granola, I mean the list goes on and on. She won't be able to drink more than 1/2 a cup at meal time, she will have to eat 6-8 small meals a day...How will I give her 6-8 meals a day when she starts school or preschool. It looks like I will have to home school her which means I will never be able to work in the office. Her birthday is next month and Halloween in October. I have thought about her not being able to trick or treat incase she is recovering from surgery but now she can't eat any candy so how can I take her trick or treating? I can get away with telling her any day is her birthday and she won't know the difference. My mind has not stopped, my house is a disaster. I physically do not have the energy to do anything. When I was crying at the appointment Addison asked if I was crying because she pukes. I told her I had an eyelash in my eye but she can hear everything we are talking about so she knows the real reason. I wish I didn't have to have her in the room during these appointments. I called Dr. McNair's office again this morning since I still haven't been called back. I hope they call me back because I really want to know what he thinks about the surgery. Tomorrow Addison will be casted for her orthotics. I am so tired of driving to Baton Rouge! Four times this week and at least 2 times next week. I know I am always asking for prayers but I am begging now. Pray for our guidance as we make a decision that will affect the rest of her life and her strength to cope with another surgery.

Wheezing

Addison had another upper GI series done last Friday and she vomited later that day. She vomited 3 times on Saturday but none on Sunday. She kept us up all night coughing so this morning I called and got her an appointment with her pediatrician. She was wheezing on her right lung so a chest xray was ordered. The results were the same as her last chest xray she had taken in March when she was admitted to the hospital for 3 days. Dr. Guidroz said she thinks Addison is a chronic aspirator. She said since she is just wheezing on her right lung it may be a swallowing problem, that when she swallows some is going into her lungs. She ordered another test, her nurse will schedule it and call me. Addison was given a breathing treatment in the office and sent home with her own machine. She also prescribed a steroid for 5 days, and a new nasal spray to use everyday. Addison is already taking a daily inhaler to prevent wheezing. Wow is all I can say. I know I am not a doctor but I am confused. First because why wasn't a follow up chest xray ordered when she was discharged in March to make sure it was cleared up? Second because when she was prescribed the daily inhaler in May it was because she was wheezing, why wasn't a chest xray ordered then? Dr. Guidroz is also concered about scarring in her lung since it has been there for so long and all the radiation she is being exposed to running all these test. Addision vomited twice this morning and 2 more times on the way home from the doctor's office. We have decided to just keep her home and take her out of daycare. We are paying each week and she usually only goes 3 days at the most. Especially with winter around the corner, she is just to fragile to be exposed to all those germs. She has only been going since March. This means I will be pulling all nighters and working every weekend. But I feel like we have no other choice. Addison will be fitted for orthotics on Friday. She has to have her feet casted and then the cast sawed off. She screamed last time so Tre' is definetly coming with me this time. Please continue to pray for Addison and our family. Me and Tre just want answers and our little girl to be able to enjoy life.

Answers Finally!

What a week! We took Addison to the circus on Sunday. She had a great time. Maw Maw Sheri and Paw Paw Pete spoiled her with all kinds of treats. She started coughing and gagging and the woman sitting in front of us turned around and said "It sounds like vomiting is next." The little boy beside her then turned around and said "Don't throw up on me" and gave Addison a dirty look. I was shocked. I just told her she has bad reflux from a birth defect and it causes her to cough. But I was furious. Addison fell asleep a few minutes later and missed the rest of the circus. I thought about saying something else to them but I just kept my mouth shut. I know they do not know our situation but it still hurt me. Addison vomited Sunday night and 4 times on Monday. Tuesday she had her weekly therapy visit. Wednesday I received a call her lab work was abnormal and needed to be redrawn STAT because of her potassium level and her heart defects. I had the order faxed to her pediatrican here in Louisiana. It was their second day on electronic medical records and we waited 1 1/2 hours just to get her registered for the labs. This was her 3rd time in 12 days to have labs done and she didn't cry at all. Thursday she had her 6 month follow up with orthopedic about her foot pronation. He ordered her orthotics which our insurance does not cover. This pair should last a year unlike the last pair that only lasted 6 months. We were offered a cash price of $400. We also have to buy her new shoes to fit the new inserts in. I took her to Chik-fil-A after her appointment since she wouldn't be able to eat after 1 for her EGD scheduled on Friday. She ate breakfast there around 10 and did not even ask to eat again the rest of the day. She did drink some sprite and eat 1/2 a popscicle. Fasting did not even phase her. We arrived at the surgery center at 5:45 am to get her checked in. She is such a big girl. She did everything she was asked to except wear the hair cap. Once again she did not shed a single tear. The nurse said when she woke up and saw her IV she told her to take it out but no tears. The EGD showed scar tissue from her last surgery has caused adhesions and narrowing. Dr. McNair was able to get the scope through so it is not as bad as it was when she had to to have surgery. An xray has been ordered to see how much scar tissue there is. It also showed her esophagus has ulcers and is raw from refulx and vomiting. Biopsies were taken and also from her duodeum which was inflamed too. It was explained to us her stomach works so slow food just backs up and then she vomits it. Her reflux is so bad it is causing her to aspirate and cough. She was coughing so bad after she woke up she was given a breathing treatment in recovery. She was prescribed a medicine called Domperidone to help get her stomach moving. It is not FDA approved in the USA so we are unable to file our insurance to have it filled. We were able to pay cash for the first prescription and if it works we can order it from another country for less money. We researched it and it's mainly used to help women lactate and it is not FDA approved becuase it is released in the breastmilk. Dr. McNair said he can order it for us from New Zealand but the pharmacist said his wife also takes it for gastroparesis and she orders hers from Canada. It does not have neurological side effects like the Reglan does. It comes in a capsule so we have to cut it open and we are mixing it with milk and giving it to her in a syringe. She takes it 3 times a day (30 minutes before a meal), Prevacid twice a day and her QVAR inhaler is 2 puffs once a day. We have elevated our bed on top of bricks to help with her reflux. If this does not work and she slides down our next option is to get a hospital bed. It doesn't look like she will be out of our bed for a while. We are just to nervous about her choking on vomit or getting aspiration pneumonia again. I am a wreck about the scar tissue already causing narrowing. Her surgery was not even 7 months ago. I am not sure what the plan is to do about it. Xrays will show how bad it is and we will go from there. Please continue to pray for her. I hope this week is less eventful for us.

More testing

Addison has continued to vomit since my last post a few weeks ago. She was vomiting once or twice a day while taking Reglan with the Prevacid. We had night after night without sleep. I called Dr. Alberty on July 23rd and he was out of town. I broke down in tears while talking to his nurse. Exhaustion and worry had now taken over. Dr. Albery's partner called in another medicine to take with the Reglan. I had the medicine filled but decided to wait for her to vomit again before starting it. She went 2 days without vomiting. During this time she was complaining of headaches, she wasn't sleeping and had dark circles under her eyes, she was irritable and not at all acting like herself. Tre' and I decided to stop the Reglan completely, it wasn't preventing the vomiting anyways. I have requested copies of all her medical records so we will have everything ready for our next move. I decided to call Dr. McNair to get a second opinion about her gastroparesis. Dr. McNair was the original GI she saw last November, whom found her stricture. But when she became severly sick (vomiting over 20 times in 6 hours) over the Christmas holidays he was out of town and our pediatrician referred us to Dr. Alberty and then Addie had surgery and we have not seen Dr. McNair since. He is a very busy doctor so I figured it would be months before we could get an appointment. To my surprise Addison was given an appointment the next business day. What a blessing. I explained everything she has been going through and gave him a list of the days and how many times she has vomited since her surgery. I also showed him a picture I had taken. Addison had eaten a red apple and vomited it 6 hours later. It was all chunks of apple I had to rinse off the towel and I took a picture of it in our sink. I know, it sounds gross but the apple I had cut in tiny pieces had not digested at all.  Dr. McNair ordered more labs, a stomach emptying test and an EGD. I explained to him I had asked Dr. Alberty for a test to watch food go down months ago and he told me she didn't need the test because he knew she had a slow stomach by what she vomits hours later. Dr. McNair said he needs to know how slow her stomach is and it needs to be documented. I am so very happy we got in to see him so soon. I feel much better now that test are being ordered to give us answers. She has had the labs and the emptying test done but I have not heard the results yet. The EGD is scheduled for this coming Friday. (this will be her 3rd EGD in 8 1/2 months) I was confused by the emptying test because they gave her a scrambled egg to eat and to me that seems like it would be easy to digest because it is soft. But I am no doctor. She started feeling better and went 5 days without vomiting but started back again last night. This week we have therapy on Tuesday, a follow up about her feet with Dr. Frierson her orthopedic on Thursday and the EGD on Friday. Please continue to pray for her and her doctors.

Here we go again

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.

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.

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.

Oh Mondays!

Addison saw her pediatician this morning about her coughing and vomiting. She has a left ear infection and is wheezing on her right lung. We have already been seeing her ENT about her clogged tubes in her ears so the pediatrician thinks it is best to go ahead and have the tubes removed and replaced and not putting Addison through more than one procedure. Dr. Scallon, (ENT, I feel like I should make a cheat sheet with all her doctors names and what their specialties are for the blog readers) had previously said she could try to suction them out and then remove them and see how Addie did without them, but I agreed it is better to just get the surgery done and put her to sleep only once. Dr. Guidroz (pediatrician) said she does not want to diagnosis Addison with Asthma because they usually don't diagosis children when they are so young because most grow out of it. Since Addison was just in the hospital less than 2 months ago she suggested we start Addison on a preventive inhaled steroid to be used daily. She also prescribed an antibiotic, an oral steroid to just be used for 3 days, and an inhaler. For the inhaler, she prescribed a mask we will have to use to be sure Addison is inhaling all the medicine. I had to go to 2 pharmacies before I found one that had the size she needs. I just got a call our insurance does not cover the mask and it is $60 when using the Rite Aid discount card, which I hope is just the regular card and not something special that we do not have. The pharmacist asked do you still want me to fill it, well of course! What was I going to say no? I told Dr.Guidroz we were denied disability benefits and she said we have to start speaking up. I need to ask all of Addison's doctors for samples. She said it breaks her heart people with children with chronic diseases cannot get help. I seriously cannot thank all of you enough for your support. I am so blessed to have each of you in our lives. I did not hesitate to have Addison's prescription filled for $60. I honestly would have paid for it no matter what the cost was. If she needs it, I will do whatever it takes so she gets it. I am in tears now thinking the pharmacist asked me that because their are families that can't afford to get it filled. I am so grateful to my employers for allowing me to work from home to give Addison the attention she deserves. And of course to all of you. Because of you all donating I didn't have to hesitate, I can get the mask. We have to take each day as it comes to us. We never know how many appointments Addison will have in a week or prescriptions. I mean we have our routine visits planned but not the surprises we are given quite often.
As for what has happened over the last few months with Michelle, I cannot focus on her. Addison is my main priority and I do not have time to play games with dishonest people. She knows what she has done and I have no reason to make these things up. I have received an overwhelming amount of messages and calls about other things that were going on. I am so sorry to all of you that were donating to her and that she did this to you. Her name will never be mentioned in this blog again. I just wanted to spread awareness. Please if you need to get in touch with me my email address is southerngal05@cableone.net and if you see Addison's pictures on flyers or anything, remove them for me. We do not have any other fundraisers going on right now. I do have t shirts for sale but I am not advertising anywhere.
Right now I have to concentrate on getting Addison ready for the ear tubes surgery. I know this is a simple procedure but Addison is very smart. She has been through so much and she remembers everything. I have posted before about the nightmares and the trauma those IVs cause her. I am already dreading being in the preop room having to put a hospital gown on her and handing her over to the nurse. I know she will be terrified. Her appointment with the ENT is next week and I will post her surgery date when I know it.
I will post again later this week after she has therapy tomorrow and we have the allergist appointment Thursday.

Too hurt to think of an appropriate title

This may possibly be the longest post I have written. We have had a very interesting weekend. Addison is still coughing and vomiting. She has vomited 6 times in the last 3 days. We had a great time at the March of Dimes walk Saturday morning. Addison's stroller won a plaque for the best decorated stroller or wagon. I will post pictures soon. The dance benefit was Saturday night. It was great to see everyone. We fried fish, sold t shirts, raffle tickets and sang karaoke. Addison did vomit during the dance but she enjoyed dancing and picking out songs to play on the jukebox. Thank you so much to everyone that helped, donated and came.
 I want to truly apologize to everyone that was in contact with Michelle McCrory Robinson. Me and Michelle were friends in 8th and 9th grade but she dropped out of school and we lost touch. Courtney Walker offered to help me with the yard sale event and created an event page on facebook. Michelle contacted her and told her we were best friends and Michelle offered to help. When the write ups were written for the press, she told Lauren Braden the same thing so she could get her name listed as a contact. We had people offer to store donations at their houses but Michelle insisted on renting storage units. She was accepting donations and advertising to contact her. I was bringing loads of donations to the units on my weekly visits to Ocean Springs. I did get a strange feeling about things that were happening. She told me she was making jars to put out at stores and I immediately told her no. It did not sound like a good idea because employees can take the money and I did not trust her to pick them up either. She would call and ask me how much I wanted for items and say she would pay me for them at the yard sale that she had everything wrote down, that she is extremely organized. She told me she had spent over $700 on gas driving back and forth to the storage unit. She asked me for a free Addie t shirt because she was wearing hers everyday and needed an extra one so she didn't have to wash it every night. She delivered a t shirt for me and I told her to use the $20 to get flyers made. The day before the yard sale we were sorting and still receiving donations. She was taking items as soon as they were being dropped off. She didn't want to even go pick up her son from school and was trying to send Mary to go pick him up. The day of the sale her husband pulls out a grill and tells my husband, look at my new grill I just got. Tre responds, I know you just got it because I brought it over. Troy responded oh yeah we are going to pay you for it. Michelle pulls out chairs to sit in that were me and Tre's old lawn chairs. I could go on and on listing items but I do not want to upset the people that donated them. We were never paid for the items she took. She did write me a check for the china cabinet and the grill, because there was no way for her to get out of those items. She insisted on sitting at the money table the entire sale. We had caught on to her by then and had already spoken days before the sale for her not to be left alone by the money. She even made a comment to me about how she felt like she was being watched. The day of the sale I was told there was a jug with Addison's picture on it and I told Michelle again I do not want jars out. She said okay and I never heard anything else about them. She never even mentioned getting me the money that had already been collected. Tre' had to deliver the china cabinet she bought and said her garage was slap full of stuff we had brought over and no telling what else she had inside.
When the dance benefit was planned she contacted the host and asked to be added to the event as a co host. My mother had to call and get Michelle's name off the event page. She created a flyer to drop off at businesses with an email address she made for people to contact her for donations. If anyone knows the email address, please let me know. She ordered more t shirts from me and said she would get the money from people when she delivered the shirts and then pay me because she was short from spending so much money on the yard sale. She told me I shorted her 2 shirts. I know I didn't, I counted the shirts 3 times because I knew something wasn't right. She would say she was dropping off all the money and raffle tickets on a certain day and then not contact me. She was deleting post me and my mom made on her facebook page asking about collecting everything. She was even picking up yard sale donations weeks after the sale was over saying she was going to give it to another friend that was having a yard sale benefit too. I contacted her to pick up the raffle tickets and t shirt money and she told me to call her when I turned into her neighborhood and she would put them outside. As I was picking them up, she tapped on the window and waved to me. I was thinking that is so weird. She doesn't want me to go inside her house, must be because she stole so much from the yard sale. She then texted me to hold her checks until she told me I could cash them. She collected cash for the t shirts and raffle tickets from people and wrote me checks I could not cash. As we are driving home from her house I get a phone call there is a jar with Addison's picture on it at a convient store. We immediately turned around to check. The store owner was in complete shock. He said him and his wife thought it was weird and even questioned if the story was real. He said he was taking customers change and putting it in the jar constantly. Michelle was checking the jar every 2 days or so. He said he would be a witness and was sure he has her on video collecting the money. Michelle even told him to protect the jar because her husband had recently left her. The store owner said she made tons of money. We left the store and filed a report with the police department. It takes a few days for the report to get posted and we will be able to press charges on Wednesday. Tre' called Michelle when we left the police department and Michelle hung up on him. She called me and said she was going to surprise me with the donations. She had a big Bama jug she was filling up for us. I asked why she took people's cash and gave me bad checks, she continued to swear she was not stealing. Here is the thing, if she wasn't, why didn't she show up at my mom's with the Bama jug? I counted the raffle tickets and she shorted me $50 for what she turned in. There is no telling who bought tickets that she didn't give to me. She told me she had given 4 books out and had not collected them from the people yet. She did not return any unsold tickets to me either, so I am sure she sold them and kept the money. I told her I was calling every person on the tickets and I felt bad for her mom because I am sure she would be embarrassed for her co workers to know Michelle stole their money. I asked about where was the money for the shirts she didn't pay for and she told me she would pay me next week. I suggested people pay me through the paypal link and she said no she was buying them as a gift. She must have already collected their money and didn't want me to know. She texted me Saturday morning and said she borrowed money from her mom so I could cash the checks, which I did. But she still has not mentioned giving me the Bama jug. Since I have alerted people I have received several messages and heard all kinds of stories of what she was up to. Apparently she either kept for herself or she pawned the yard sale items she stole. I cannot see any other reason she would leave me the tickets on her porch and not open her door. The only reason I was in contact with her for so long was I wanted the money she owed us. She plays the role she worked so hard, which she did but not for us, she was working for herself. She fooled everyone into thinking we are best friends. We are so hurt and shocked that she has done such a horrible thing to our family. Can you imagine walking into a store and seeing a picture of your sick child on a donation jar? Please help us spread the word and if anyone donated for the raffle or silent acution, we need to know. We may have not received the donation. Again I apologize to each and every one of you that were in contact with her. Please contact us if you see anything with Addison's name or picture on it or if you have any other information we may need to know. Or if you see anything with Evan's name on it. Evan is the little boy the yard sale was for too. When I think of everything we have been through and we were embarassed to ask for help to begin with, I am just devistated.
As always please continue to pray for Addison's health. I am bringing her to the pediatrician in the morning about all this coughing and vomiting. She will have therapy on Tuesday and see the allergist on Thursday. Tomorrow we will also deliver Addie t shirts to a group of Southeastern nursing students.

Busy little bees

What a week it has been! Addison vomited 10 times in 12 days. She has been puke free since last Friday. She had her evaluation with a speech therapist who specializes in feeding yesterday afternoon. She said Addison has a few things going on. The first thing is she swallows her food almost completely whole. I had noticed last week in her vomit it was quite chunky. The therapist, Margaret, said she is only chewing like 2 times and then swallowing. That is why she spits food out. She spits the pieces that are to big for her to swallow whole. Margaret did a series of test on Addie. Addison also has sensory problems. For normal people when you taste something sour you will make a face. She was giving Addison pure lime juice and Addison never made the sour face. Margaret said she puts 2-3 pieces of food in her mouth at a time because she cannot tell she has food in her mouth unless it is full. She suggested we add lemon or lime juice to all of her food, even mashed potatoes. We have some homework to do. We have to set a timer for 5 minutes and reward Addison when she sits at the table the whole time. Each week we will add 1 minute to the timer until we are up to 12 minutes. I also have to go buy some tubing for Addison to practice chewing twice a day. Addison will have therapy every Tuesday for an hour. Margaret said some of the exercises she will do will most likely cause Addison to gag and vomit but we have to teach her how to chew correctly. Addison averages 1 doctor appointment a week so we will be even busier now. I guess we were spoiled with her other therapy sessions because the therapist would come to the house. Next week Addie will have therapy on Tuesday and see the allergist on Thursday. The following week she will have therapy and the ENT on Thursday. We have to follow up with her GI, Dr. Alberty after she sees the allergist so I am going to try to make it for the following week so we are not living at doctor's offices and don't go more than twice a week.We are getting things ready for this weekend. Saturday morning we have our walk for the March of Dimes. Saturday at 6:30 the benefit dance starts. I don't think people realize how much work goes into fundraising. The hardest part about the shirts is collecting money. I not only had to pay for the shirts, the raffle tickets and the dance tickets all up front but it is sad when people ignore your messages. I have had 3 people offer items for the raffle and we advertised for those items with their logos on the flyers that have not given me the items. Now we are forced to raffle the items we had for the silent auction. I don't understand how people can be so rude. The whole point was to help us with the medical expenses and now it is actually costing us money. More than anything my feelings are hurt and it has added more stress and disappointment. I will continue to pray for them and others that have let us down in our time of need. I pray they never feel the hurt and disappointment I am feeling and they never have a child with a medical disability. Okay, I said my two cents and I am moving on. We are still going to have a blast walking with the March of Dimes and shaking our booties for Addie. We will be frying fish starting at 6:30 and your meal is included with your ticket to the dance. Where can you go to eat and dance for $10? I will be very busy these next few days so I probably won't post again until Sunday night or Monday. Lets pray for a great weekend and a vomit free one too! I can't wait to see everyone and for all of you that have not met Addison, I can't wait to show off our precious miracle and strong fighter.

After Addison woke up from her nap yesterday she was complaining her belly hurt. She was very fussy and I could not please her. Even to change her diaper was a struggle. She wanted a diaper, I got it and she screamed for a pull up, I got the pull up and she screamed for big girl panties and on and on and on. She even at one point was crying for me to bring her to the sink. She started vomiting last night around 8:30 and continued to vomit 2 more times through out the night until 4 am. She was saying things like "I am sorry I puked," "No more puke please," "Is my food in a tube?" and she pointed to her nose, "I need to go to the hospital and get an IV." It was a very sleepless night and I have decided to trash our comforter instead of taking it to the laundry mat again. I plan to just go buy a regular blanket, something that will fit in my washing machine as soon as I can.
I called and spoke with her pediatrician's nurse today. Dr. Guidroz had mentioned Addison needing to see a speech therapist about her feeding issues back in February. When Addison vomited, it was very chunky like she was not chewing. She still chews and spits out her food but not as much as she used to. She has been gaining 1 pound a month but I really think it is from drinking milk.  Dr. Guidroz sent over the referral and Addison has an appointment next Tuesday for an evaluation with a therapist that specializes with feeding and oral motor skills. Once she starts therapy her sessions will be at the same time and day each week in their office in Baton Rouge. It has only been 3 months since she stopped getting her other therapy sessions through Early Steps.
Since she has now vomited 7 times in 10 days me and Tre have decided it is time to get in touch with the Cinncinnati Children's Hospital and get her an appointment. Even if they tell us the same as her GI here I will have peace of mind we did everything we could for her. After her stricture being over looked for so long I cannot rely on her doctors even though she has new ones.
I know how awful it is to vomit and to think that is all she knows, it just breaks my heart. She is still waking up 2-3 times a night so the sleep depirvation doesn't help me out either. She has never slept in her crib and sleeps in her nap nanny between me and Tre'. Please continue to pray for our family and Addison's doctors guidance to lead us to some answers.

Update

Addison continued to vomit on Wednesday. She ate lunch at daycare and vomited right afterwards. Tre' had to pick her up early and was told not to bring her back the next day. They said they know she is not sick but just incase. She vomited again later that night. So now I am faced with what to do about daycare. Since Addison can vomit at any given time why should I pay for daycare and her not go? It is extremely frustrating. They even said they know she is not sick! She had already seen her ENT and pediatrician so she was definetly not sick. Her appointment with the Allergist is on May 3rd. That was the absolute soonest they could squeeze her in and the receptionist made it very clear she was double booking the doctor's schedule. Sometimes I just cannot get over how the office staff treats patients. Its not like I want my child to be sick and vomiting all the time or like I am over exaggerating just to get her in sooner than the end of May. I could really be feeding her something making her vomit all the time. Thankfully Addison has not vomited since Wednesday night so it was 4 times in 3 days. I have applied for disability Medicaid but not heard anything. I also applied for Social Security Disability and have an appointment in the morning to finish the application. It took me 3 hours to list all of Addison's doctors and their information, as well as the hospital and surgery center stays, and places she has had xrays and swallow tests. I even had to list dates she had appointments. Hopefully it will all be worth it. Addison has been talking about the tube in her nose and the tube that was stuck in her belly this weekend. Please continue to pray for her and that we have an uneventful week.

Talk about some bad luck! Allergies

Besides the sugar free diet, Addison had a great week last week. We didn't have any doctor appointments. She did develop bad diaper rash with blisters which we are still battling. We think she may be allergic to soy so we have switched her to regular whole milk. We headed over to Ocean Springs Thursday night for me to go to work. On our way home on Friday afternoon we stopped by Front Beach and let her play in the sand for an hour. She loves the beach and feeding the seagulls. We stopped to eat lunch and it never occured to me restaurants do not have sugar free drinks on the menu. I still have a lot to learn about this diet. On Saturday we celebrated my nephew, Colin's 1st Birthday. The party was another obstacle for us. Addison of course wants candy when she sees other children eating it. My sister in law was nice enough to make her sugar free cupcakes. On Sunday Addison woke up around 3:30 and I just couldn't hold in the surprise of what the Easter Bunny left so at 4 she got to see all of her goodies. Since we did not find her a bunch of sugar free candy, the Easter Bunny left her a live bunny. We are not sure if the bunny is a male or female but I named it Ester. Addison however keeps calling it Chester, so Chester it is. He is all black and adorable. She is so excited to play with and care for Chester. I heard her asking Chester if he was feeling okay and if he needed an IV.
 Monday afternoon she had an appointment with her ENT Dr. Scallon. Both of Addison's tubes in her ears are nonfunctioning beacuse they are clogged with ear wax. Dr. Scallon was able to remove some wax buildup from her right ear canal. She said her body produces so much wax the tubes are clogged and stuck and cannot fall out. She prescribed antibiotic ear drops for us to give Addison twice a day. And we also have to mix hydrogen peroxide and water and basically pour into both ears during her baths for 2 weeks to try to break up the wax. We will follow up in 1 month on May 8th. If the tubes still look bad Dr. Scallon will try to suction the wax out of the tubes and if that doesn't work she will surgically remove the clogged tubes and replace them with new ones. I want to be positive and think her tubes will unclog from the antibiotic drops but I am so used to everything going wrong it is hard not to expect the worst case senario.
 Last night Addison woke up around midnight coughing and vomiting. Her cough sounded so painful and she would cry everytime. We had a rough night. We went to see Addison's pediatrician Dr. Guidroz this morning and she believes she is allergic to the bunny. She prescribed antibiotic ointment for her diaper rash and allegra twice a day for her allergies. She said we do not have to get rid of the bunny yet but the bunny has to live outside and we have to wash her hands very good after she plays with Chester. She said for me to apply for disablity Medicaid and for SSI income that Addison should have been receiving both from birth. She said after I apply she will write a letter stating Addison does have a disability that will affect her the rest of her life. It is so weird, I know Addison is sick but it is like I am still in denial. Just hearing I have a child with a disability from her doctor made it even more real. So that is my next step, applying for both benefits. I have been applying for regular Medicaid and that is why we keep getting denied. Disability Medicaid is a completely different application process. I asked more questions about Addison's sugar free diet too. Dr. Guidroz said as long as we are omitting the sugar juices and candy we can try to give her regular milk and other foods. Our next step is allergy testing. Maybe we are feeding her something she is allergic too and that is why she is still vomiting.
Please continue to pray for Addison, her doctors, and that we can figure out how to be approved for the SSI and Medicaid benefits. Thank you everyone for all of your support.

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.