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.