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.