Thursday, March 1, 2012

Expecting the worst

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

Wednesday, February 29, 2012

Tune In

Don't forget to tune in tomorrow at 10 AM to 96.1 The River for the Our Lady of the Lake Children's Hospital radiothon. We will be interviewed live at 10 to share our story about our most recent hospital stay. You can listen online at http://www.961theriver.com/main.html or on your iphone through Iheart radio app.
Addison has started the bacterial antibiotic liquid Flagyl to kill any bacteria overgrowth she may have from food being stuck in her duodenum. Dr. Alberty said it wouldn't cause diarrhea like most antibiotics but guess what, it did. She has been doing better with her nightmares. I wish I could record her after she has one. It is so weird, her voice changes and all. It is just like we are in the hospital all over again. She hasn't been talking about the tube in her nose anymore but she still talks about the IVs and her belly boo boo. I wish she didn't have to go through so much. It is like she can't forget about it because now we have another test for her to take and she had 3 doctors appointments this month.
For March we have a upper GI series with small bowel xray, surgeon follow up, another GI follow up, and we get to pick up her inserts for her shoes. It is not only a copay expense going to the doctor appointments, the gas adds up driving to Baton Rouge at least once a week and I am not looking forward to paying for the inserts either, $737 cash, they do not accept credit cards. I was telling someone about how our insurance, Blue Cross Blue Shield of Louisiana, does not cover her orthotics or the inserts and they asked me what are you going to do? My response, whatever it takes. She has to have them and she is my daughter and I know God will provide for us. I was able to pay off another bill today, Addison's neurologist, Dr. Holliman. She was seeing her every 6 months but was discharged a year early at her last appointment in October. It was just under $70. I have been using t shirt money, donations and our income tax refund to pay off as many smaller bills as I can so we can pay more on the big ones. We have started a raffle too. The tickets came in today. Please contact me if you are interested in donating or selling tickets, southerngal05@cableone.net. As always thank you for your continued prayers and support.

Monday, February 27, 2012

Even more testing

We saw Addison's pediatric GI, Dr. Alberty, today. He doesn't know why Addison is still vomiting so much so he ordered another test for this week. He also prescribed Flagyl. He aspirated her duodenum and the pathology report came back fine but he said she may have bacteria overgrowth on the outside from the food being stuck so long. She will take it 3 times a day for 10 days. I had to go to a compounding pharmacy to have the liquid Flagyl made for her. If we do not notice any changes she will start Reglan. If the test she has done this week doesn't show us anything she will have to have a motility test as well. If we still don't know what is going on we will have to start checking for allergies. He said normally he doesn't like his patients to be on Reglan longer than 2-3 months but patients with a cronic stricture like Addison will have to be on it longer. But she definetly still has something going on causing her to vomit. We will follow up with him again in 1 month. He said normally he is the one doing all the testing but in Addison's case we have to do the testing (medication trials) and tell him the results. I do feel confident he knows what he is doing and I trust him. He spent over 20 minutes explaining everything to us. I have been keeping track of what she vomits and when she does but now I have to also keep track of what she is eating. She was already supossed to have another swallow test next week ordered by the surgeon to check to see if the part of her duodenum that was enlarged is still enlarged and he said he will get her testing done this week. He said he is certain it will still be enlarged so this test will be different. It will time how long it takes the fluid to go down. Hopefully we will figure this out soon.
We will be interviewed live on Thursday at 10 at a radio station in Baton Rouge called 96.1 The River to share Addison's story about her most recent stay at Our Lady of the Lake Children's Hospital. It is for a radiothon to raise money since it is a community funded hospital. I am so nervous. I have been so emotional lately I am so scared I will start crying on air.
On a happier note, I paid off the surgery center she had her tonsils and adenoids removed and PET tubes placed in her ears and the one in Ocean Springs she had her first EGD done at. I also paid off the anesthieologist, radiologist, Dr. Alberty's bill from the EGD, and Dr. McNair. I owe the surgeon over $1,000 but I was able to make a $125 payment all this week. Thank you to everyone who ordered t shirts. I am hoping we have a huge success at the upcoming yard sale and dance to pay for her orthotics that our insurance does not cover.

Sunday, February 26, 2012

To medicate or not to medicate

Addison went to daycare Wednesday, Thursday and Friday morning. When Tre' picked her up on Friday she had just vomitted. Her teacher said she ate some yellow watermelon and she gave her seconds and then she vomited. As soon as she came home she vomited 2 more times. We bathed her and she asked for a popscicle so I gave her one while she was playing in the bath tub. She ate 1/2 of it and before we could get her dressed she threw up again. She then asked for juice so we gave her 3 sips and it came right back out too. She was crying for mashed potatoes and chocolate milk but we were scared to give her anything. She finally cried herself to sleep and took an hour nap. She ended up vomiting 5 times in 2 hours. After her nap she was feeling a lot better and running around being silly. I called her GI, Dr. Alberty he said if she started vomiting again to bring her straight to the emergency room and to start her on the Reglan. She has an appointment with him Monday afternoon and I want to discuss with him the side effects before I start her on the Reglan. It seems she may need it because she is still vomiting so much but the side effects are horrible and who wants to put their 2 year old on something like that?
 Me and Tre' just feel so helpless and the constant worrying is so stressfull. I was feeling better the last few days. I went to Jazzercise 3 days in a row, I got my hair done, I made homemade cleaning products to save money, I planned out our dinners for the entire week and went grocery shopping. This may seem like normal things to most of you but when you are depressed you just don't have the energy to do anything so it was like running a marathon for me, especially getting all that done in 3 days.
We are still accepting donations for the upcoming yardsale on March 24 for Addison and Evan. We will need fold out tables, grocery store bags and volunteers to help with setting up, taking down and during the day. The southernbelle tshirts came in too and they are so cute. It took me 2 days to sort through all the orders.

Thursday, February 23, 2012

School Days

Things have been going better. Addison hasn't vomitted in almost a week. She will tell us she needs to but she hasn't. I wonder if it is just the reflux aggervating her and that is why she thinks she needs to. She does get the hiccups a lot. I weighed her at home and she has gained her weight back and is between 28 1/2 - 29 pounds. Her belly is still swollen and she has been wearing bigger sized clothes. It seems so weird to me to dress her in a 3T. She has always been at least 3 months behind in her clothes size. She was wearing size 24 months before the surgery. Her size 2T dresses still fit but the pants are to tight on her belly. Thankfully Target has cute kids clothes for $5 a piece. Her nightmares are getting better. She has always woke up during the night but usually drinks something and then goes right back to sleep. You can tell when she has a nightmare because she crys and it has a different sound. No matter what we try we cannot calm her down. She doesn't know what she wants. First it is milk, then we get it for her and she wants apple juice, then she wants a baby blanket, then she wants to rock in the recliner, it goes on and on. She also has started asking for a pacifier which is just silly. She very rarely took a pacifier when she was a baby and she got really sick when she was 9 months old and hasn't had a pacifier since. But she gets so upset we will give it to her if that is what it takes to calm her down.
She started daycare yesterday. Her teacher said she didn't cry the whole time but acted sad the whole time. She goes from 7-12 in the mornings and then comes home to eat lunch and take her nap. Which works out perfect since she can't lay flat on the mat like other kids do for their naps at daycare. I get anxiety when I think about her catching a stomach virus or getting sick from the other kids but she really needs some interaction so she can learn to share and play with other kids.
I enjoyed my morning "off" yesterday. Although it was not a break at all, I worked the whole time. But at least I can listen to the TV while I work and catch up with all the news.
We took Addison to the Baton Rouge Zoo on Tuesday. It is a small zoo and usually takes around 2 hours to see the whole thing but she loves it. The animals must have liked the weather because they were so socialable. The bigger elephant was reaching his trunk across letting people touch it. A giraffe was as close as he could get and and Addison was reaching out her hand with a leaf trying to feed him. Our favorite bird talked to us too. I always shake Addison's snack bag and the bird will follow me and usually dances. He will bounce his head up and down and say "hello" and then reach his hand out for a bite. I never feed him but Addison loves it.
My mom's friends from Biloxi High, the same ones that had the super bowl party, are orgainizing a dance for Addison. It will be on April 28 from 8 pm-12 am. Admission is $10 a person or $15 a couple. You can bring your own drinks. There will be a DJ and Karaoke so come shake it for Addison! We will also have the raffle drawings there too. We are still taking donations for the yard sale benefiting Addison and Evan. You can read Evan's story at http://allaboutevan.com/ On October 19, 2010, two year old Evan Heidingsfelder was is diagnosed with ALL (Acute Lyphoblastic Leukemia). He is still fighting and will receive chemo until 2014. We will take anything, so please contact me at southerngal05@cableone.net if you have donations. As always thanks you for your prayers and continued support.

Saturday, February 18, 2012

Here we go again?

Addison vomitted again last night. That was the second time in 3 days. I hope things are not going back to the way they were. She doesn't follow up with her GI until the 27th. I am keeping a journal of the days, time, and what she is vomitting for him to look at. I hope she doesn't have to start taking the Reglan he prescribed. She was drinking her milk last night and just stopped and said I need to puke in the sink. She did wait until we could grab a towel but as soon as we placed it over her, it started coming out. I am so confused. I don't know if I should worry about her stomach from the surgery, if she just has "slow stomach" and the food is taking awhile to get digested, or if she is just so used to vomitting she is making herself. I really don't think she is making herself, who would want to do that? She is still swollen and I even had to get her some bigger clothes to wear and larger sized diapers. I weighed her yesterday at work and with all her clothes and shoes she weighed 30 pounds. I was all excited and then realized she had a very wet diaper. But I think she has gained all of her weight back. Please continue to pray for her recovery and that we can get some answers to why this is still happening.

Wednesday, February 15, 2012

Day By Day

Sorry it has been so long since the last post. Addison is doing better. She has started asking to go to school and play with the kids. Last summer she went to daycare for 15 hours a week but she only lasted about 6 weeks. She would cry and throw up and well I just couldn't take it! She would come home in a different outfit from vomiting and I felt like we were paying and she wasn't even there. Since she keeps asking we have decided to try it again. She will just go from 7-12 and it is across the street from where Tre' works so he will drop her off and bring her home on his lunch break. I am not going to lie, I need some mommy time. I still have gift cards from my birthday last May that I haven't been able to use. I need to start taking care of myself again. She starts back next Wednesday.
I was feeding her grits yesterday for breakfast and she all of the sudden said I am going to puke and she did. It wasn't a huge amount of vomit but I still don't know why it happened. I feel so sorry for her because she just acts like nothing has happened when she does it. I know my stomach gets sore and it hurts so hers has to feel the same. That was her third time to vomit since surgery 3 1/2 weeks ago.
She is talking about the tubes and cutting her belly less and less each day. Today we went to get the oil changed in Tre's truck and she got scared. She was saying things like: They not going to check me, its not going to hurt, no more ouchies mommy. And she didn't even leave her car seat, she was just scared because we were some where different. She is still waking up during the night. But that has always been her routine. She isn't crying as bad and goes back to sleep faster. Her schedule is still messed up. She was awake until midnight last night and 11 the night before. Poor Tre! I have to work so he has to stay up with her and then get up during the night and be up at 6:30 for work. I am hoping daycare will wear her out and get her back to a normal sleeping pattern. Fingers crossed! She is still waking up during her naps too. It is the weirdest thing, it is like she doesn't know what she wants. She will ask for apple juice and then we give it to her and she screams she doesn't like apple juice and she wants chocolate milk. She is still not eatting a whole lot or even a lot. I have tried cutting her food into shapes, fixing her favorites, like corn on the cob she would normally eat two ears and now she only takes 1-2 bites and she is done. I needed to do some dishes and she wanted me to play with her. I handed her the barbies and said you play and I will be doing the dishes and she responded with "Play with me, chill mommy. Yes mam! Any excuse to put off the dishes for a few minutes.
As for me, I am feeling a little bit better too. I was upset because I expected people to react the way I would if the shoe was on the other foot. I just don't understand how they can't even ask how Addison is doing. And it isn't just friends, it is family too. I know for a fact they know what is going on. I read a quote a few days ago about God putting people in our lives for a reason or a season. I guess the people I was hurt by are just meant to be "seasonal" friends. I have heard from lots of friends from high shcool that I have not seen in over 12 years (yes I am getting that old!). They have even bought shirts and sold them to their co workers. My mother in law had her hair cut today and the beautician didn't charge her, and told her to put it towards Addison's orthotics. She doesn't even know us! I even had an exboyfriend doante but peole I see everyday don't even comment on her. I am moving on, I am not letting others bring me down anymore. I would love to say what goes around comes around but knowing me I would be there to help them anyways. I guess I inherited the nice trait from my mom. Those of you that know her know exactly what I mean.
I just deposited almost $600 from my mom's classmates from Biloxi High School. They had a superbowl party and raised money for Addie. Now I can pay off the surgery center that is always so rude to me. I have started receiving notices from our insurance company but no bills yet. I know, they are on their way! Addison of course met her $750 deductible and her $3000 out of pocket while she was in the hospital. My goal is to mainly pay off the doctors, pay for her inserts and orthotics and just owe the recent hospital and the one she was born and spent 5 weeks in the NICU. Of course I would love to pay them off too, but as long as we can shrink the amout we are sending out monthly that is a huge help.
We have set the date of March 24th for the yard sale to benefit Addison and Evan. Please contact me if you have anything to donate. My email is southerngal05@cableone.net. I am also placing another order for the tshirts on Friday if you missed out on the last order. I can't wait to get them in and start seeing purple every where. Addison also has a team walking for the March of Dimes in Diberville on April 28th. You can join her team or make a donation to the March of Dimes at my website http://www.marchforbabies.org/JrgautreauAs always thank you for your continued support and prayers.