Sister Bonding

A couple weeks ago, after Annabelle's second round of Endoscopies, I decided it was time to give in to Mady begging and my wishing for a change - so we rearranged upstairs.. quite a bit. Mady moved into Annabelle's room and we turned Mady's room into a playroom! It's so cool and so sweet. The first trick was getting all the furniture to fit, and to our surprise, it actually did. The bedroom is full of Mady's twin bed, Annabelle's crib/toddler bed and both girls dressers and that's it. They don't need anything else in a bedroom really. The playroom is a lot of fun and will now host ALL toys, so I get every bit of the rest of my house back, and I couldn't be more happy about it!

The girls are enjoying sharing a room. They truly don't seem to wake one another. Mady knows the rule is that she has to stay in bed and cannot get up until her sister wakes, so it's actually helpful at keeping Mady in bed and not coming into our room at 5:30am. Annabelle is becoming a heavier sleeper, finally, and it's no issue. I am loving it. SO MUCH! I think the girls enjoy it too. Only one night have we checked the monitor and found both kids in the same bed, and it was actually Mady in BELLE's bed :) If everything continues to go well then we will consider looking for bunk beds. I just wanted to make sure it wasn't going to fail miserably first before we made that type of investment.So far though, they are really loving it.

Mady is always so concerned about her sister. She will scream her head off into tears if she see's Annabelle even PICK-UP a piece of food, she is terrified she will eat it and get sick. Fortunately, Annabelle usually brings the food to us and never eats it so that's not a problem. Mady loves her sister, she worries about her staying healthy and she protects her from any harm. On the other hand, Annabelle can also drive Mady so nuts it's zero time flat, it's amazing. Mady needs to learn how to stand up to her sister and not take the bullying that ANNABELLE does to HER! Unreal. It's normal sister bickering stuff though, it's hilarious to watch and at times enough to pull your hair out "Uhhhh! Mommmm! Annabelle is looking at me!!!!" Really, kid?! Really.

Annabelle is in LOVE with her sister. I think Mady is starting to pull a close favorite to daddy in her book. I am surely in last place with no chance of moving ahead. Each day that we are home before daddy and Mady, Annabelle looks out the door and literally sqeals with excitement when they pull into the driveway, she screams 'SISSSSSHY!' the baby mumble is enough to melt your heart. I love watching the two of them in love with one another, playing, laughing and growing.

This past Saturday, AK got up with both girls and they were in the playroom together, he came downstairs and crawled back into bed with me while we watched the girls on the camera/tv in our bedroom. If we are in the room with them, they will bicker and whine in a split second. For an hour and a half, ALMOST TWO HOURS(!!!!!) they played together without ever the first mumble of an arguement! What's up with that?! If they keep that up, I will be starting a new parenting technique called 'lock the kids in a room by themselves for 1/2 the day'.

Love those girls though. They are my world.

Reflection and a new chapter

Several years ago, a 20yr old girl was drowning herself in wedding magazines and crunching budgets, losing sleep and daydreaming about walking down that aisle. That girl was me, OCD as ever and taking everything to heart and worrying over the details. Someone walked to me and said "Enjoy life, everything is about to fly by so quickly, you won't believe it. Slow down, pay attention, breathe."

Let's zip forward. LIFE IS SPIRALING FULL SPEED AHEAD! I blinked from sitting in that two bedroom apartment, newly engaged and I am now managing a house with my kick-ass sidekick husband. We're navigating leaky water faucets, a dog that I swear is on drugs, two little girls that look just like him, a mortgage, crap economy, full-time jobs and well.. life! A couple years ago is when I told myself, "Ashley, you really will forget these times. The sleepless nights, the heart aches, irrational fears, prayers and silly toddler chit-chats." I knew I needed to start writing down these things. I knew I would appreciate them as time has passed. It's just sticking to it was the problem.

Let's move forward again. Today, April 2013. I have been jotting entries here and there for some time when I think about it, but lately life has changed, God has decided we need a new curveball.
We have a sassy, sweeter than ever 4 year old that is growing before our eyes. Madelynne Marie. She is our light, hilarious little mini me.

Annabelle is her little-terrorist, I mean, baby sister that loves to do anything that big sissy is into. Annabelle was recently (finally) diagnosed with EoE, Eosinophilic Esophagitis. March 28, 2013; life as we knew it took a drastic change. The life we new ended and we began a completely new chapter. That's not to say it is all terrible (many aspects do, suck), but it's just to be our new, different. We are learning to live life differently than we ever have and as a family we will absolutely make the most of this new adventure as well!

Fear the momma of the hurt baby cub

I never knew what kind of fight, determination and drive to get what I need, lived inside me until I see the pain in my child's eyes.

Annabelle isn't doing so hot. She isn't doing awful but she also isn't doing great. We have great days and we have crappy days. But mostly these come in waves of weeks. You see, when she is on liquid prednisone she is fine and we have great days. She is smiling (albeit crazy) but she is happy and eats great with no side effects. When she is off the prednisone she relapses, and fast. She returns to coughing, choking, wheezing, vomiting and overall miserable (I believe to be suffering from Roid-Rage). Each time we return to the doctors with the same issue, they add another medication on top of our current treatment. And were not getting any relief! Currently, we are in the phase of no prednisone and coughing, choking and wheezing. I took her to our GI Specialist two days ago and begged him for help and a change in her treatment plan. He agreed she was on entirely too many meds and said he would speak with the allergist and together they would determine a modified treatment plan.
Last night I get a call from his nurse: Keep all treatment plan the same, don't make any changes.
Me: What? That can't be right. He isn't remembering our discussion yesterday because he agreed she is on entirely too many meds!
Nurse: No. He agrees with Dr. George and the treatment and thinks that it will all work out.
Me: Work out? My child is a textbook with these meds. She will only get worse the longer she's off the prednisone. I guess I will just wait another couple days for her to get worse and well see you again in 3-5 when she's miserable.
Nurse: Well, Im sure she will be fine! Have a good night!

W.T.F. ?! UGHHH!!!!

I haven't been sleeping well lately. You know those nights when you lay in bed and cannot solve the puzzle spiraling around your brain? You just keep thinking of so many different ways to solve the issue and it just keeps manifesting into a long drawn out - still not solved - issue. You roll over frustrated and it's 4:30a. Toss and turn and fall asleep at 5:15am. Alarm clock goes off at 5:30am. FFFFF!!!!!!! Yea. Ive been having those days. I need to fix my baby. She's sick and she looks to momma to be able to help her and I can't. I don't mean to say that our doctors are WRONG but I do think that this warrants a second opinion. And after a couple sleepless nights that was the conclusion that I came to, to solve this pain in the ass issue. Getting a second opinion though? Not as easy as it seemed at 3:47 am on a Tuesday night.

VCU Doctor. Ive seen lots of news articles on her and she specializes in EoE. First available appt. June 15th. I took it.

Kluge Children's Hospital in Charlottesville. Old as dirt but specializes in EoE. They're waiting on the August calendar to get me on the books. I declined.

Inova Fairfax Hospital. Can't pronounce his first OR last name but he looks to know what he's talking about. Soonest availablity, sometime in July. Declined.

Pediatric Gastro Assoc. Another old doc but he came recommended from a fellow mom of EoE (actually two moms). I fear him bc both their kids were immediately placed on a feeding tube and we are avoiding that route. Soonest available appt. is June 10th and I accepted. If I drop off her medical records to the office, they may be able to get me in sooner.

The King's Daughters Children's Hospital in Norfolk. I found a doctor that did his internship and began his career in pediatric gastroenterology at Cincinatti Hospital!! Cincinatti is one of the two hospitals that specialize in EoE, the other being the Children's Hospital of Penn (CHOP). His areas of focus are in Eosinophilic Esophagitis and GERD, both things Annabelle has! I feel like he is the golden ticket.

Soonest appointment available, July 1st. I took it without hesitiation and put on my hard hat and began to think around. I called my pediatrician and spoke with Dr. Young, I am so glad I got her on the phone and explained the situation. As soon as she heard Annabelle's diagnosis, she began pouring with sympathy as to how sorry she was that I was beginning this nightmare. She explained that a good friend of hers is living the same hell and is currently at The Children's Hospital of Philadelphia but still living a nightmare. Then she excused herself and began apologizing for not being very PC and tactful over the phone but wanted me to know that she understands what I am fighting against and wanted to do anything to help. I explained the situation and asked if she could pull any strings to get me in sooner, without hesitation she took the phone number I had and called the DOCTOR right away. They spoke for a bit and he asked that I send over Annabelle's medical records and he would get her in right away. Ta-Da! I feel like a woman on a mission and nothing will get past me. I never knew I would have to work so HARD to find answers and push for help for my daughter but I am. And I will continue to jump thru whatever hoops I need to do the best for my little girl. No matter what.

So now we are waiting for the hospital to call us about where to send medical records and when our appointment is rescheduled for. I cannot wait to take our trip down there, I pray we get good news, at least a different treatment plan. OR even if this doctor does agree with our current treatment plan, I would like to hear that. Because right now I have lost of questions and reservations as to what we are doing. I also pray she doesn't get worse too fast and we cannot see this new doctor before needing immediate help here in Richmond. Fingers crossed!

Some one-on-one time with my Mimi Me Mady!

One of my irrational fears as a parent is making sure everyone is loved equally. I hate favorites and I never want to be that parent that is more fond over one vs. the other. Some days one child is a bear and the other is sweet as pie, other days it's opposite. Some days one child is sick and demands attention and other days someone may have a big accomplishment that deserves recognition. I understand that the attention will be delivered where it should, I just never want anyone to not be getting enough of me as they need. I think I have become even more sensitive to this as Annabelle is getting older, and more sick. Now with the diagnosis, it seems Annabelle is all anyone ever talks about. I confess, I spend entirely too much time researching Annabelle's condition and completely overlooked the fact that Mady is nearly blind as a bat! Would I have caught that had I not been so focused on Annabelle? I don't know, I try not to focus on things like that, I'm carrying enough guilt as it is. That being said - to avoid my own guilt and ensure all my babies are getting everything they need, I try to stay EXTREMELY conscious of the time I give them.

Last weekend the girls and I had a day out to ourselves. AK was in Prince George cutting down trees with his dad. I needed to take Mady to find glasses. She apparently has a teeny little face which makes this shopping quite frustrating, and very limited in expensive choices. We settled on a pair of hot pink frames to knock $179 out of daddy's checking account. We next moved to Short Pump Mall to have lunch. This was the first time I was alone with both girls, and Mady needed to eat. I didn't really know what to do, but I knew I needed to entertain Annabelle and still ensure Mady has lunch. I too was hungry, but that takes zero presedence. We ended up going to the dreaded food court and I ordered Mady Chick-Fil-A, as she was eating, I took Annabelle to the play center for her very first time and she LOVED IT! The smiles and silly toddler running with duck feet was enough to melt anyone. She was so proud of herself when she learned she could climb the tallest structure. She loved waiving at the kids and then running away. When Mady was finished she ran in and they both played for about an hour. In a big way, it was a great relief that I have kids at an age they can do the same things together.. no more of one being too much a baby and can't go play without my constant help. It was a great afternoon.

That evening after AK got home, Annabelle needed a bath and I researched the movie list. Mady hasn't seen a movie since a couple weeks before she became a big sister. I found a showtime for The Croods for 7:25 and knew we had just enough time to sprint out the door, have dinner and make the movie. We went to Lonestar and ordered cheese fries, she was beside herself over all the cheese and her own ranch to dip :) I ordered us both Shirley Temples with extra cheeries and she sat close beside me and kept rubbing my hand saying "I love you mommy, you're my best friend in the whole world."

After dinner we checked the time, chased each other in the parking lot to run to the car to "hurry! hurry!" It was 7:10p and we had a big surprise! Standing in line to get our tickets Mady started coughing. She's had this terrible cough for a while but this time it sounded deep and persistent. I asked if she was alright and she kept trying to push thru saying "I am ok mommy! Let's have our surprise! I am ok!" Her coughing then turned into a gag and I knew we needed to make a break outside and away from the million people around us. That's when she started throwing up, nice pureed cheese fries and staining cheeries from a Shirley Temple, ALL. OVER. US! I kid you not. Her and I were both DRENCHED in vomit. Drenched is an understatement. She was so upset, and to be honest, so was I. I felt like throwing a towel because it's just typical of my life lately. I try to do so much and nothing ever seems to work out, Im so tired of disappointment. About a mile on our drive home, I looked in the rear-view mirror and saw a little girl with her dropped head. My heart sank. She didn't do anything wrong but she knew she was cause for ruining our surprise and the big night. I called AK and said "Find me another showtime at the nearest theatre, were coming home to change! Pull out Mady a change of clothes, we're making this fast!" I couldn't make this about me being upset, I didn't want her to see that, and I didn't want to finish our night on that note. It wasn't her fault at all she wasn't feeling well and she DESERVES a good night out with mommy. We ended up FLYING to Commonwealth Theatre, grabbed ourselves popcorn and the kids pack and made it in to the 7:55pm movie with one preview left to show and the movie began. She was quite sleep and spent the second half the movie in my lap but we laughed our hiney's off the entire time. To be honest, I loved the movie and can't wait for it to come out. We got home super late and were both asleep as soon as heads hit the pillow. Mady had a wonderful time, and I enjoyed the break up of the routine too. I love any time I ever get with Mady one-on-one, the kid is a riot and hilarious! She deserves that undivided attention.

She is so eager to help you, please you, make you proud of her. She wants to know if she's being brave during times that are scary. She wants to make you proud when she makes her bed in the mornings. She loves when you recognize her hard work when she draws you a beautiful, extremely detailed picture.

Interviews and Assessments Galore

This week is full of even more homework for myself.

Today I had an interview by a lady from Social Services and a nurse from the Health Department. I am applying for an EDCD Waiver to obtain Medicaid for Annabelle. Here's the thing about the EDCD Waiver; I must prove that Annabelle's medical needs are so extensive that if she were not in my care, she would require a hospital / nursing home-like setting to meet all her needs. Instead, she is home with us but as a family, we need home health assistance to help Annabelle thrive, and provide me some sanity. The EDCD Waiver will appointment a nurse to come to our home and help care for Annabelle so AK and I can work out of the home / go to dinner / grocery shopping, etc.

I also need Medicaid. Annabelle's prescriptions, co-pays, procedures, formula are so incredibly expesive we are drowning. Medicaid will help cover those costs burdens to us and allow us to continue getting the things Belle needs to thrive. Such as, I need to pick-up the Pulmicort prescription but it's $435 and I just don't have that right now! I also need to order her PPI but that monthly prescription is also $84 and I cringe placing the call for a refill. She needs Medicaid, but as a household, we make too much to qualify. The EDCD Waiver will guarantee Annabelle Medicaid coverage.

I believe the interview went well. I did a lot of homework ahead of time and had a lot of paperwork printed out for the nurse to review. I answered the questions as thoroughly as I could. About an hour into the conversation, we moved to the section of questions where they began asking about Annabelle's emotionally behavior. Some of the questions were completely unrelated such as "Does she talk about not wanting to live, commiting suicide?" but one question provoked a thought that I hadn't considered yet and it left me with tears streaming down my face, unable to talk any longer.

When Annabelle is working on something, if she can't figure it out, she sometimes screams out of frustration or just drops it and gives up.. not moving onto the next thing, but just drops it and sits with her head down. When she is eating at the dinner table, bite after bite she may cough until she vomits; finally, she just stops eating and gives up. Every picture we have Christmas morning, Annabelle wasn't very interested in opening gifts, but just laying in the floor with a sad little face, wanting to be cuddled up and next to someone (daddy) but just not interested in all the 'happiness' of the event.

For so long, everything she tried to do was just exhausting, she was constantly defeated and she just began to give up. She cannot communicate to us her frustrations so she stops trying. She cannot eat a meal without it hurting her so badly and then vomiting, she just stops eating although she enjoys food. I had a depressed infant. NOTHING breaks a mother's heart like seeing her baby sad and upset. And I reflect back at all the situations and events where I didn't understand her behavior and it is now ever so clear. She was just defeated in this disease. Like a prisoner in her little painful body that can't communicate her feelings or emotions, she just gives up.

My heart absolutely broke for her. Not 10 minutes after we moved past that section of the interview, AK was home with Annabelle and she pranced thru the door with a smile ear to ear and ran up to me in her sneakers that make walking look very toddler-like! She gave me hugs and kisses with a smile on her face and made her way around the room. Ive never seen my baby so happy. Im watching her blossom into the infant / toddler / daughter that I always dreamed she would be. I love her. For everything she has been thru and her fight for so long, I love her even more today that I have yesterday because I see the smile on her face that I have been fighting for her to wear. Ive never seen such geniune happiness in my sweet Annabelle until this past week but I see it now. It's been worth every fear, tear, prayer, worry, countless hours of research, journaling, doctor trips, begging for answers, savings accounts checking accounts, everything. 


1:30pm was her assessment with Infant and Child Connections to determine any developmental delays. AK took her and it KILLED ME not to be there during the visit! He gave me a very detailed report on how everything went however (he's learning what I like to hear.... details details details!). They had two women doing the assessement. 1) Cognitive Behavior 2) Speech. She seemed to do excellent in a lot of areas, in fact, her cognitive skills were almost at a 20mo level! Her speech however, specifically Expressive Speech was at a 10 month olds level and will require speech therapy. I want to discuss the visit a little more tonight with AK so him and I can develop a plan for what we will want out of speech therapy and will call them tomorrow. For the most part, I want her brought up to the level that she should be on naturally, and then I would like to learn how to communicate with Annabelle and teach her how to communicate with me. I believe that right now is the very BEST time to getting her help. She is happy, full of energy and like a sponge. She wants to learn and wants to communicate and finally has the energy and patience without being in pain to do these things. I can't wait to see how fast the speech therapy helps us, Im looking forward to it.


Let's change pages for a second. Can we talk about how much I despise Lincare Medical? 
Here's a reminder why: 

1. When Annabelle was about 5 months old. I noticed we were getting low on formula. This was Wednesday evening. I called Lincare first thing Thursday morning and asked why I hadn't received my shipment. Everyone was clueless and they promised they would expedite the order. That's great, however, I will run out of formula before the order arrives on Monday, I need cans NOW! The lady over the phone assured me that a dietician would be out to my house to deliver a couple cans tomorrow (Friday). I was learly but I said ok. Of course, Friday afternoon, I never saw a dietician. I called the office and got an attitude from the first girl, shortly after disconnected. Called again and was transfered to who I needed to speak with. I stayed on hold for 10+ minutes before calling back, when I did, they were closed. I called the emergency, after hours number repeatedly and never got a call back. I ended up spending 8 hours calling EVERY SINGLE pharmacy, hospital, hospital pharmacy, doctors office, patient first, kidmed, pediatrician until I finally broke down in tears and didn't know what to do. It was 10:00pm on a Friday night and my baby LITERALLY didn't have any food to last the weekend. I called the CJW NICU and asked for any insight. The sweet nurse dug thru an old cabinet and found ONE can that was expiring that month. She hand delivered it to my house the next morning at 7:00am. She is an angel. The shipment didn't arrive until Tuesday evening and I never heard from Lincare.
2. After this incident, I began researching ways to find the formula cheaper. We were being billed $3,192/mo for the unreliable shipments and with a quick internet search, I found that I could order the formula from the manufacturer myself, without having to go thru the medical supplier!
1. Lincare supplier = $95/can
2. Directly from manufacturer = $35/can

Anywho. Let's move to the present. That was over a year ago and we haven't dealt with them since. Annabelle will now be on formula for a long, looooong time and fortunately for us, we have reached our maximum out-of-pocket for the year, so if I choose to use a medical supplier for the formula, it will be 100% covered, and I won't even have to cough up the $770/mo for the formula myself that we have been paying. Unfortunately, my insurance will not work with Pediatric Connections (another supplier) they will only participate with Lincare. Great. The nurse from Dr. Villalona's office has sent my paperwork to them 3 times in the last three weeks and keeps asking if I have heard from them, I haven't. I called today to ask at the GI Office what I should do, and mid-conversation I stopped, asked for the number and just called Lincare myself. The girl I spoke to first, said that she never received anything, and then later confessed that she did get the information but said she had noted in my file I can get the formula cheaper elsewhere so she never bothered calling me. That was a year ago! So she just chooses to ignore the doctors paperwork that is being forwarded her way? Incredible these people are. I don't know how long it will work out again with Lincare, but I sure do know that they need to get their act together. I can't be the only one having to deal with this nonsense.

Highlight!

The weather outside is ABSOLUTELY BEAUTIFUL! For the first time, we're feeling sunshine and warm days. I couldn't be happier.

Welcome to Holland

"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 - Italy. You buy a bunch of guidebooks 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 supossed to be in 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 guidebooks. 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, 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 go away. Because the loss of that dream is a 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."

"Im never going to be your baby again, Im a big girl, Im FOUR!"

Shocked, amazed, heartbroken, blessed. My baby girl, the beautiful little thing that first made me a mommy is now FOUR. I can't believe it.

She woke up and ran downstairs. Standing beside my bed I hear:

Mady: Mommy, is today Thursday?
Me: Yes sweety it is.
Mady: Is it March?
Me: Yup
Mady: The twenty-first?!
Me: Uh,huh
Mady: THEN IT'S MY BIRTHDAYYYYY!!!!

We jumped up and had breakfast. I picked out a super cute outfit for her to wear to school and we perfectly placed her Happy Birthday hairbow in her hair. She was off to K3 with a bucket up cupcakes to share with her friends and it was snowing.. yes, snowing.

I went to work and was driving a meeting from 8-4p all day. I had been devoting so much time in preparing for this meeting that it was a relief for it to finally be over at 5p when I left to go pickup Annabelle. I got home and ran into AK in our bedroom, "Where's Mady?". He said, "She's in her room and she's being a brat". Ooooook!

I went upstairs and as I was talking to her and wishing her a Happy Birthday, mom called to sing to Mady and ask where we should go to dinner. Mady wouldn't talk to her, instead, she didn't say anything and was being rude on the phone. I instructed Mady several times to tell Nenaw 'Thank you' and she wouldn't speak. Finally I took the phone from mom and told her we would have to call her back. I tried talking to Mady but she indeed, was being a brat. I said 'Fine!' I took all her new princess wall decal stickers off her wall and her toys as she went balastic; screaming, thrashing around, begging for me to stop, bawling crying. I am tired of the nasty attitude and not listening. In the midst of the meltdown I checked the time on my phone, 6:09pm, "Happy Birthday!" and slammed her door behind me.

Once the monumental meltdown was over we all got in the car and began heading for Don Pepe for dinner. We passed Keith leaving the subdivision and waved him down. He joined us for dinner and everyone had a great time. It was a lot of fun and the perfect simple ending to a birthday :)

Friday was my day off. That was supossed to mean I could party plan / clean house / organize for the weekend.. I dunno, relax. Instead I ended up taking Belle to Kelly and heading into work for 4 hours. Then home to drop things off and pickup Mady before going to her 4yo Check-up.

Big Doctor's Visit
First thing we did was weight and height.
34lb and 41in tall! Growing so big!
BP 86/60

Secondly the nurse walked Mady to the eye chart and asked that she tell her what all the pictures were. She did great! .....until she made Mady step back about 20ft and asked the same questions. Mady couldn't ready any of them. She couldn't read until she got nearly to the top line. She was frazzled and upset and finally said, in the sweetest voice, "I can see the boat really good". The boat is the tip-top picture and it just broke my heart that she knew she wasn't able to answer the questions. Looks like she is a little less than 20/40 based off this rinky-dink evaluation. Ive made an appt with a Pediatric Opthamologist for the 15th of April and hopefully they will do a more specific test to give better answers.

We went in to the room to see the doctor, waited briefly and everything looks great. Finally. It was time for the shots. Mady and I had discussed she would have to get shots at her appointment and she understood what that meant. They would hurt, but only for a second and it would be all over. She needed to be brave and I would be there with her the entire time. She was scheduled to receive four shots but I choose to only do two this visit and then two more next time. Four is just too much for their immune system at this age, I didn't want her arms sore for her birthday and I didn't want her running a fever or feeling yucky for her parties. We decided on two and kept it moving.

The nurse came in to do the shots. She did better than I could have imagined! I snapped this video and Mady loves replaying it to watch how brave she was :) I swear the kid doesn't feel pain.

Saturday was party day and everything went fantastic. I actually ran on time, no, I wasn't running BEHIND schedule and it felt like on time.. slowly, im getting it. The weather for Mady's birthday was snowy, Friday was frigid cold, but Saturday ended up being absolutely beautiful! I couldn't believe it. It was upper 50s all afternoon which allowed us to just keep the back door open and let people and kids walk in and out, play, scatter and spread out because goodness knows we can't host that many people in our house at one time! It was a tight squeeze during present and cake time. All the kids played very well together and had a blast. Mady was a little overwhelmed at different times but she did good nonetheless. She used her manners when opening presents and said thank you. After the party was over, Lindsey and Jeremy, and Jake and Bekah all stayed to hang out for a bit, it was nice being able to cut loose and enjoy extra bears. Mady racked up on toys and I cleaned my house 2396026 times but all in all the weekend was worth every bit of it. Seeing Madelynne's happy face for her birthday party was priceless.

Our Life is Forever Changed

It's taken me a week to update. That is partially because we have been so busy, my head is spinning; and also because I am just too heartbroken to write in words what the last week has done to our lives. Let's recap. Shall we? Hang on tight, it's been an adventure.

Monday, March 25th

We arrived at the hospital at 7:15am, 15min late but in our defense the roads were COVERED in snow. We drove extra cautiously to the hospital with both kiddos in tow. The kind nurse checked us in and right away & we were taken us back to pre-op. I sat down in a chair and held Annabelle in my lap. We undressed her down to her onesie and put a cute baby gown over her. You could tell she knew something was going on, she was incredibly cautious and in-tuned to everything going on around her. Several nurses met with us, explaining the procedure. Dr. Villalona came by to say good morning and explain what would be going on. The anesthesiologist checked in and we determined that due to Annabelle's soy allergy, she cannot receive IV anesthesia, so they would have to use gas to put her under, do the scope, come back up, gas, scope etc. The nurse finally came and picked her up and took her from us and walked down the hall. Mady was a welcomed distraction and I took her by the hand and we made our way back to the waiting room.

I used that time to feed Mady breakfast. The diaper bag was packed with a buffet: banana's, applesauce, zucchini bread, apple, OJ, Milk etc. I played on my phone browsing anything to keep me distracted. I fixed Annabelle a sippy cup, warm, to have ready when she was finished. FINALLY! 45min later she was done and we were told we could go see her.

The sight of my sad, terrified baby was nothing less than heartbreaking. She was laid on her side, SCREAMING harder than you can believe. She couldn't lift her arms or open her eyes but she was hysterical. The nurse asked if I would like to hold her and I begged yes. She lifted poor Annabelle and all her cords/wires, and they moved her bed and replaced with a chair for me to sit. She hardly had ANY control of her limbs/head, she still couldn't open her eyes but eventually she heard my voice and calmed down. I wanted to cry SO hard, and had Mady not been right beside me, equally terrified, I would have. Mady was so tender and sweet, she held Annabelle's little foot and sang her song:

Baby Annabelle, of mine

Everything about you is perfectly fine

I love what you are

and I love what you do

Baby Annabelle,

I love you

Finally Dr. Villalona came to meet and talk with us.

Dr. V: I think that's going to be it.
Me: Really? Ok, so you could tell just during the scope?
Dr. V: Yes, absolutely. I couldn't see much going in but towards the end there was plenty indicators for the disease.
Me: Ok, wow. I really shouldn't be surprised, I mean, the more I read, the more she looked to fit the bill for Celiac's. So should we just start avoiding gluten?
Dr. V: No... no I am sorry Ashley, I believe she has EoE, Eosinpholic Esophagitis.
Me: What?! No... no , really? Are you sure?
Dr. V: Well, let me show you what I saw.

Dr. Villalona then showed me the pictures he took during her scope. The top of her esophagus truly didn't look too terrible (not to my uneducated eyes at least), but towards the end, something looked very, very wrong. Terrible in fact. He told us he would be contacting Dr. George (our allergist) and let her know what he has seen and we should get the biopsy results on Thursday.

Shortly after, once Annabelle was in daddy's arms, she calmed down and we were able to go home. We spent the afternoon kinda in a trance. I didn't talk much, because I didn't want to break down too soon. I did a fair amount of googling the disease, mostly trying to figure out how to pronounce it. The kids took a good nap and that evening we all had different dinners. Mady had what she wanted, Belle had noodle soup and AK and I didn't eat, I just didn't have an appetite. We went upstairs to clean and I got a wild hair that said "let's take down Annabelle's crib and give her a big girl bed". It's now been a week and I am glad we choose to take advantage of her being sick and sleepy because 8 days later she has never tried to get out of her bed. She lays down and goes right to sleep. I am shocked and so happy! She loves it too, it's the sweetest thing seeing my big girl snoozing.

That evening I wanted to go to Target. I stopped at Starbucks and walked around the store for an hour and a half, silent, no phone, just walking and thinking. I went to bed praying.


Tuesday, March 26th

Annabelle was at Kelly's and so tired. She wasn't herself, reasonably so. Kelly kept me updated really well all day but with each text it broke my heart. She said "We rode all the way to Louie's school and back and she didn't take her shoes or socks off. We know she isn't feeling well!" - See, Annabelle doesn't believe in shoes and socks in the car, it's like her personal mission to have them off immediately as soon as you shut her door :)

Around 3:15pm Kelly called me, "Louie has a temperature and a kid in his class has strep. Im running him to the doctor now and will let you know what they say in case you need to find out what to do if Annabelle's been exposed to strep after having her poor throat biopsy'd!" Fortunately he tested negative for Strep and I showed up early to get Annabelle and went home. All day she only drank a cup and a half of formula. A slice of lunch meat and a couple grapes. My throat would be sore too!

Wednesday, March 27th

Sheila came over to watch Annabelle so I could keep her from Kelly's. Of course when I got home the house was a mess but nonetheless Annabelle was safe and away from what was keeping poor Louie sick, but her cough sounded terrible. She only drank two cups of formula and wouldn't eat all day. I tried for dinner to get her to eat and she just wouldn't, I can't force a baby to put food in her mouth so I gave up. We all went upstairs and took baths, I squeezed Annabelle extra tight after laying her down and went back downstairs. I spent most my evening browsing online. Laid in bed early and zoned out trying to watch TV. AK and I watched The Following until midnight and I swore I wasn't going to be able to sleep. I am pretty sure I fell asleep DURING my prayers asking God to please give us good news tomorrow. I prayed the doctor was wrong in what he was seeing, I prayed for a blessing for my little girl that deserves a break.

We skyped with the Lloyds and chatted for a while. It's so nice seeing our friends on a regular basis, via internet or not, it's so nice having that support system. They've been a bigger support than our entire family and then some. They are praying dearly for us, and to be honest, they're a lot more in touch with the big man upstairs than we have been lately, so hopefully he hears their prayers sooner than ours!

Thursday, March 28th - Our Lives Changed

I dropped Annabelle off and talked briefly with Kelly about what the tests may say. I was clueless and couldn't concentrate on our conversation to save my life, but I welcomed the distraction. I gave Annabelle several kisses while she sat in her highchair and said goodbye. Pulling out the subdivision I started to pray. The further I drove, my stomach began to sink. I just knew today would bring me news. By the time I sleep tonight, I will be upset to not have answers, or upset to have a diagnosis I didn't want. There were so many unknowns and it made me literally sick. I crossed the funky railroad track and my bluetooth cut in and interrupted Elliot in the Morning. The screen read: GI Specialist. The time was 7:35am

Dr. V: Good Morning Ashley. Are you sitting down, busy, or have time to talk?

Me: Yes, yes now is fine! Good morning to you.

Dr. V: You probably want to grab a pen and paper, I have a couple things to tell you.

I was speechless, I knew by the start of this conversation, it wasn't going to be one that I could have while driving down the road and I found the nearest turn off to park. Grabbed a folded piece of paper and knocked everything out my glove compartment to locate a pen.

Me: Go ahead, Im listening.

Dr. V: She definitely has EE, I am so sorry.

He explained to me how they measure and what numbers mean on the biopsy. He explained again what he was seeing, rings, furrows, scarring etc.

Dr. V: We want to see a reading of zero. 5 is a positive and 15 is a definite confirmation we have a problem. At the lower end of Annabelle's esophagus, she was showing numbers in the upper 40s. The middle was above 25 and the upper was over 15. Here's how we treat this, we remove most the top allergens and switch to an elemental formula.

Me: But, we're already doing that. Those top 8 trigger foods aren't even in her diet! She's already on formula and has been.

Dr. V: I know, I am equally baffled. I am going to call Dr. George as soon as I get off the phone with you and we will discuss a game plan. Annabelle also has a great deal of gastritis in her tummy that was visibly irritated, once this disease is under control and the gastritis is healed, she will, for the first time, feel good. She won't be in any pain. You've done well Ashley, you have a diagnosis although it isn't what any of us wanted to hear. But we know what we need to do to help her. We will get there, it will be a long road but your baby will be happy and pain free very soon.

I thanked him very much, asked a couple random questions including the terrible coughing, he said that most often kids with this disease have asthma, and he will mention it to Dr. George. Once I hung up I called AK right away. No answer. I called Kelly. No answer. I called Kristy - beneath a whisper that tells me she was laying in the bed with her sweet baby's, she finagles her way out of her bedroom to talk to me. I explained to her what the doctor just said. I was very matter-of-fact about it all. I think I was in shock. I didn't have a studder in my voice and just read off the facts. I was almost to work and pulled in the parking lot when it occurred to me, "My baby may never have a birthday cake" "My baby will have this disease and will NEVER be normal for the rest of her life, she will always be fighting to stay in remission. She may never eat food again!" At that time I broke down.. only half way. I was sitting in my car in the parking lot and couldn't look like a mess walking inside. I couldn't allow myself to get upset yet. Then AK called back, I explained to him the results as he was walking Mady inside the school. He was pretty quiet, I don't think he really thought she would have the disease so the news seemed like a surprise  Our conversation was less than 30 seconds. Which was helpful because again, I needed to keep myself pulled together!

As the day went on I moved about in a trance. I didn't rush to update people, I did respond to those that texted me. I called mom and she needed to call me back, which took place several hours later and she seemed unphased. I talked to Kristy a lot during the day. We discussed back and forth the research and information we had found online. We reassured each other constantly that everything is going to be alright. Annabelle is strong and no matter what, she will be feeling better and for that will be grateful. Food or not. I had a meeting at 1p and did my best to concentrate, finally I told him "can we reschedule, I am worthless today, I think we covered enough information already. Let me work on this and get back to you next Thursday?" I scheduled us for the following week and he left. Just then the allergist called me back and asked that I come in that afternoon at 4:30pm to discuss the diagnosis, our game plan, what this all means, get started on meds etc.

Today was Grandparents day at Madys school so Sheila had Madelynne with her. I called Sheila on my way to pickup Annabelle and told her, "The allergist wants to meet with AK and I at 4:30p, would you mind hanging out with Mady until we are finished at the doctors. We are discussing xyz and it's right beside AKs work, he will be meeting me there."

Sheila: Well I am going to bingo tonight, as long as AK is home before 5p that's fine.

What?! We don't even normally get off until 5p and wouldn't be home until 5:30! Needless to say AK came to the appt. but had to leave before the doctor even came in to see us. I was so upset. I spent the next two and a half hours talking with Dr. George, collecting stacks of prescriptions and going over a game plan for a diagnosis, all the while trying to wrestle and distract a very cranky 18mo from staying out of trouble. To be honest, most our conversations didn't sit well with me. She seemed to have an extremely lax approach to treating this disease, she even offered the option of doing nothing. If you don't treat and bring the disease into remission you will destroy your esophagus, potentially never be able to eat food, endure painful esophageal dilatations breaking the rings, etc etc. I couldn't believe she even offered that approach which then led me to finish the rest of our conversations. We agreed the most realistic steps are to remove all foods from her diet, ensure she is getting 34oz of formula each day and maintaining her weight. We have two weeks to have her diet in place and the meds doing their job well. After that the clock starts for another scope and biopsy in 8 weeks. So 10 weeks total, we get to do this hell week all over again.

Friday, March 29th

That night Annabelle was up from 2-4:30a coughing and choking. I was less than a minute from taking her to the ER. It looked so similar to an asthma attack but different, it also looked like croup but sounded too raspy/wheezy. It was bizarre. I called Dr. George the next morning to discuss two things: Pulmocort prescription costs $435, we need another option. And the coughing, I need help. She listened to her over the phone as we were talking and said that if she starts again that she needs to go to the ER. In the meantime she would work on the prescription. She did call back, and that WAS the generic and it WAS with my insurance, for a price of $435! Good god, Im going to need help.

I decided the kid had been inside so much this week. It's Good Friday, let's go see the Easter Bunny. All was going well until we were standing in line and Belle started coughing again. We quickly took our picture and I left. Drove straight to Chippenham ER where we hung out for the rest of the day. She had Tracheitis from being intibated Monday during the procedure. They gave her a couple meds and she took a nap on my chest. Mady was an ANGEL for being stuck sitting on a hospital bed for an entire day. I was very proud of her, she's been a champ this entire time. She tells people "My baby sister has boo-boo's in her tummy. She can't eat". lol

Saturday, March 30th

I wanted to go to Short Pump to try to begin the kids easter shopping. I haven't bought the first thing and wanted to at least get their easter shoes, a bathing suit for their basket etc. We left the house so late that we only had time to lap the mall unsuccessfully and then run to Whole Foods to pickup an insanely priced chicken salad to take to Shawn & Amanda's Easter Egg Hunt. This was our first event since going off all foods. In many ways it broke my heart, BUT Annabelle did end up doing great! I just kept pushing the formula on her and she seemed to stay satisfied. We hung out until everyone was on the verge of meltdowns. Got home and got both girls in bed, Annabelle's neb treatment and then I ran out. I went to Southpark Mall to find the kids some shoes.. side note: we have GOT to move from this ghetto, ridiculous place. Im over it. Then I made my way to TRU and spent entirely too much trying to fill an easter basket with no candy or chocolate! I finished the night at Target getting the loose ends and buying every sippy cup they sold for the little girl. Mady made out pretty well too. It was nice to get out, but I was exhausted. I assembled the kiddos baskets, made sure everything was placed just perfectly and went to bed.

Sunday, March 31st             Happy Easter

Of all days for the kids to sleep in, they would on Easter Sunday when we need to be at church! AK jumped in the shower and I went upstairs to get the girls. We brought them down and destroyed the baskets, I really expected more excitement, but without chocolate and only an outfit and sippy cups, you can't get too much excitement. While AK dressed them, I showered and we moved quickly into our routines of getting our family of 4 out the door without running 30m behind. We actually made great timing and beat mom and Mike to church. I stepped out the van and realized I was incredibly overdressed. What kind of church is this?! Belle went straight to Sunday School and Mady wanted to go to church with us. I was hesitant but she insisted. We stopped first for coffee and warmed banana bread with butter, mmm. I like that the church did that. It doesn't cost anything really and I loved having a coffee for the service!! The service started with an exerpt from the guy on Duck Dynasty, I really enjoyed it but the rest of the service was odd. It was like being at a rock concert with a cross on the stage. The pastor wore jeans. I don't know, I think I really looked forward to being able to sit in church and being in touch with Jesus, there were a lot of things I needed to say to him, pray with him, thank him for and beg for help. I needed to feel him and his spirit and it was hard to get there with banging drums and four electric guitars and the singer jumping up and down as if she was at an ACDC concert! Odd. When the service was over the doors opened. It was POURING! I hurried to get Annabelle from Sunday school, I missed her, and we waited for AK to pull up with the van. Moms dinner was actually very nice, we met Mike's parents and they were so sweet. Annabelle napped while we all ate and Mady sat in the highchair :) It was a great Sunday.

Afterwards we headed to Prince George. There was a little harder because again, another function, more food, and my baby can't eat. We tried to hang out outside a lot but it was so chilly. Fortunately the time passed quickly, the easter egg hunts were adorable watching the kids run around and the big kid hunt was fun as always. I got closest Ive ever gotten to Chris, I got 52 and he got 58. I swear he cheats somehow, I don't know what he does but one year I will beat him.

Whew, I told you it's been an adventure!! It was a whirlwind of a week. I have spells where I can't hold back the tears from dripping off my chin. I am heartbroken that my girl will never be 'normal' whatever the hell that's supossed to mean. She will never be able to eat in a restaurant, ever. Our best hope is for remission, this disease will never go away! Mady is the biggest trooper I have ever seen. She's as sweet, tender, compassionate as ever. I love those qualities about her. She is the perfect big sister, hands down. Annabelle will be just fine, I know she will but she has a long road ahead of her. I promise I will be there every single step of the way. I will always fight for her and the answers and help she deserves.

My mission right now: Medicaid as a secondary insurance. We make too much money to qualify but I found a waiver that excludes the household income and only pertains to the income of the applicant, Annabelle, and she doens't make any money. So now I can just pray she can get approved. Im working my butt off for that.

I need to get organized big time. I am already loosing track of the insane amount of information that just stays in my head, eventually things are going to start get deleted in order to hold what I put in! I bought a couple things to begin a binder to keep everything organized the way it should be, so hopefully that works out for me.

Resources saving my sanity and draining my phone's battery:

http://community.kidswithfoodallergies.org/

http://apfed.org/drupal/drupal/index.php

You never think it's going to be your kids that get sick. I read stories, blogs, watched videos and the research of kids with EoE and never in my wildest dreams did I think she would be that 1 of 10,000 kids that would have it. Here I am, I now have a kid with a disability. Never, in a million years would have guessed it. I didn't ask for this, Annabelle didn't deserve it but it's the cards we were dealt. The way we get thru this journey will make all the difference and we will, with flying colors, soaring high we will get thru this!

The best things in life are about so much more than just food.

My baby is sick, we need help.

So after the appointment with the allergist, I got a call from the GI that they indeed had a cancellation come up. We met with Dr. Villalona and I told him with tearful eyes, "Something is wrong with her, I need help, she deserves answers". He asked a few odd questions.

Has she been tested for corn? No, but she eats it.
Does she cough and choke on things that she isn't allergic to? Yes, see, look at this video, and that's just a cup of water!

Dr. Villalona explained to me that to ensure she is thriving and doing well, she needs to be gaining 8gr/day, and she has been averaging 2gr/day since last September. She hasn't gained any weight since her birthday last September and has held her 22lb.

Her immune system is spiraling down and terribly dangerous, especially in the midst of flu season. We can't afford for her to get sick again, not after the last tummy bug that kicked her butt.

He suggested it's time to Scope her and see whats going on. He believes she may have Celiac Disease or maybe even Eosinophilic Esophagitis, EE. He will do an Upper Endoscopy and biopsy her esophagus, stomach, small and large intestines and that should give us the answers we are looking for, at least if nothing else it will rule two of the most likely things out.

The nurse came in and gave me several cans of formula, she is so sweet and our insurance isn't covering Elecare. AK ordered another case last week but it still isn't in, and the worst thing in the world that can happen is not to have food to feed your hungry child! We took our lab slips and ran upstairs with 20m left to spare at LabCorp to begin the bloodwork for surgery scheduled the following Thursday, March 21st.. that date sounds awfully familiar.

Only three sticks this time to get blood and they were done. Thank Heavens! I don't know why but that little girl has the toughest veins to draw blood from, every visit to LabCorp is heartbreaking. We got home again, around 6:30p, exhausted and heartbroken. What if my baby has Celiac Disease?! :( I began my week long of researching.

The next day I called the GI back and asked to reschedule the procedure. March 21st IS a big day. It's Madelynne's Birthday and also the day of my big, big meeting at work that I can't reschedule. We moved it to March 25th, the following Monday. Which is a good thing - it allowed for me to have my meeting and focus on getting ready for that, Mady's birthday was all about HER, we could throw two birthday parties and then put all the fun behind us and get back to reality on Monday and do the procedure.

I called the hospital and my insurance to make sure everything was covered and also get an idea of what we were looking like, cost wise. That conversation went a lot like this.

$5,000 immediate out of pocket
Then insurance pays 70%, I pay 30% until we reach $16,666.

It looks like at a minimum I will be paying, $8,918 for this procedure. Why the hell do we even pay insurance when every year I am forking out $20-30,000!! There goes our new house, again! Heartbreaking doesn't begin to touch how we feel about these bills. We work, hard, everyday and try to do well, everyday. We didn't ask for an unhealthy child, that's the gift we were given to be this blessing of a little girls parents and to be her best advocate to fight for what makes her thrive, smile and get the most out of life. It's just a shame that politically speaking - I work my butt off to make money, just to be screwed by insurances and government to have to pay ALL this money, because I make it. If I didn't have a job, this wouldn't be a conversation, all these expenses would be free. I have too much pride to take the ignorant way out, but gosh it makes me so mad! We deserve a nice house that we fit in and dream of!! We make the money to do it! We just get to drown in unnecessary medical bills instead. A constant frustration, that's for sure.

Anywho. In the meantime, I have been conscious of what to feed Annabelle and keep an eye out for the Gluten Free sections in the grocery store to see what may be in store for our future. Deep down I am worried sick about the procedure but I am trying my best to stay occupied and busy! Soon, were getting so close to answers and they just can't come soon enough!

Im in over my head. This winter HAS to end!

The last couple weeks have been hard. Very hard and trying to say the least. 2013 so far has sucked for us, January was a struggle and February just plain sucked. Let me give you some of the highlights.

Belle: Croup round 1, 2 and three.

Belle: Double ear infections

Mady: Sinus Infection

Mady: Upper Respiratory Infection

Both: Strep tests positive, testing for cultures

Both: Constant, non-stop, never-ending colds and snotty noses

Finally, the stomach bug from hell.

All this crap began around Christmas. Slowly we all started getting sick and the girls have been taking turns keeping AK and I out of work the best they can. It's embarassing how much time we have lost from work. One afternoon, I was on my way home from working out of town and Kelly called, it was the FIRST break from the 30 degree weather we have had, it was 60s and the kids NEEDED the fresh air so she asked if I would like to join her at the park. I agreed, I picked up Mady early and met Kelly at the park. The kids played but Annabelle was very monotone. While pushing her on the swings, AK called me.

AK: Hey hun. How are you?

Me: Hey! Im good. At the park with the kids, meeting Kelly. When are you coming home? You should join us! It's beautiful outside today!

AK: Yea, about that. I have this job that needs to go out tomorrow morning at 5am and I some things just came up that I need to work on. I'll be here pretty late.

Me: Ok.. so how late? Like after dinner? Do I wait for you to go to bed? How late?

AK: Well. It's going out at 5am. So yea.... that

I looked at Kelly and said, "Well. My husband won't be home and yours is out of town. Why don't we go out on a hot date together? ...with the kids too of course. Chick-Fil-A?"

During dinner, Annabelle pooped. It smelled horrible and I just knew it would be a mess so I decided we were all finished anyway and I would wait until I got home to clean her up so I could give her a bath. When I opened the back door in our driveway, my jaw fell to the group. She was sitting in a pool flood of feces. Im not even kidding. She could literally splash in it. I didn't even know what to do! I couldn't figure out how to get her out and upstairs without ruining everything in our path! I ran in and grabbed a towel. Pulled her out the carseat and ran upstairs and pushed the rug to the hallway. That became my battle zone. The poor baby couldn't stop pooping. I gave her a bath and 10min later she did it again. Again, I CANNOT describe the amount of fluid that can come from that child.. Mady was right beside me, doing her best to help although I asked her to stay away. She would get me plastic bags. I would bag the trash (diapers, disposable cloths.. sometimes clothes) and tell her to carry it downstairs and throw it outside! lol. I didn't have time run laps! I was in over my head and already changed myself twice from being pooped on twice. Finally. I gave Annabelle a couple cups of water to hydrate, she started to slow down and I was able to pull the messes and house together. I bathed and scrubbed Mady. Got her in bed and came downstairs to begin scrubbing everything else.. doing incredible amounts of laundry and dismantle the Hazmat condition of a carseat.

That's when I texted AK, "You could not have picked a more perfect night away to be unreachable at work. Our house is going down. Ive been pooped on twice and everything in the car and second floor is covered in your kids poop. Either hurry and help or stay far away!"

He texted back: Now I know why my stomach hurts so bad... Im on my way home.

When he got home, he threw up for about 30min straight. Again, I did more laundry. He was up and down all night sick. Each time he got up, I went upstairs and changed Annabelle's diaper to keep her dry. The rest of the week was equally shitty. We battled who would stay home because we both needed to be at work. Friday was our Anniversary and I asked AK to stay home so I could go to two of my meetings, one of which was at an off-site substation. He grumbled and agreed. I promised to be home at lunchtime. Noon rolls around and the guys at the substation are just finishing up, I felt so bad for AK but had to tell him I would be late.. he was ticked. I got back to the office, cancelled my second meeting and said I was on my way home.. until I went outside and my tire was flat. Called him again - he was furious. As if somehow it was my fault! We were all just tired and frustrated. The weekend was spent helping Annabelle get over the tummy bug that she just couldn't seem to kick.

Monday. The first day Annabelle is feeling better. Mady had an appointment with the Orthopedic doctor and took another xray of her shoulder. Miracles and prayers were answered! She's healing!! No more surgery!! I took her to school and went home to let Belle nap. Annabelle had an appointment with the allergist at 2:45pm. I met AK for lunch, then ran around for a few before getting to the allergist 15m early. We began a test to determine if the Rice Milk I have been giving her for two months was making her sick. Annabelle screamed the entire time I talked to the doctor trying to explain things.

Then my phone vibrates, it's Mady's teacher from school: Mady just threw up all over the table.

I am already on the verge of tears because of the last two months. Annabelle has been sick and we haven't slept for a week and a half straight. The doctor visit is enough to make someone jump out the window.

My response: You're kidding.
Mrs. Davis: Nope. She's thrown up everything. Can you come get her now?

I had to make AK leave work AGAIN and go get Mady. I couldn't walk out of the visit with Annabelle because it's a very important visit for us. She's had a lot of issues lately and I fear they have everything to do with allergies so I needed to stay.

We got home that evening at 6:15pm from the allergist. It was horrible. Belle is indeed allergic to Rice, among many many other things including HIGHLY allergic to trees, molds, pollen etc. The spring promises to be SUPER fun for her :( We were placed on Neocate formula because we have now eliminated every single milk on the market, and tightened down the diet even more. Once we got home. she spent the next two days vomiting the Neocate.. projectile vomiting, including all over the dinner table not 3min after we sat down to eat. I decided to move her myself back to Elecare and she is doing much better on that instead.

Mady spent her night vomiting every 30min until there was just nothing left on her poor little tummy. I pulled bed sheets downstairs and took the pillows off the couch. I made Mady and I a perfect comfy bed on the couch and laid a towel on the floor that held: a bucket. wet washcloth. sippy cup of water. tv remote. At 11pm I gave her an old Zofran that I had leftover from my pregnancy with Annabelle. That slowed the vomiting to every hour until 3am when she started every 30min again for a couple hours. At 5:30a I walked into the bedroom and told AK I needed to tap out and sleep before going to work. I slept for an hour and somehow managed to drag myself thru the day. By the time I was home, Mady was bouncing all over the house and eating everything in sight with no issues! Thank goodness! I hate seeing my babies so sick :(

For Annabelle, we are meeting the GI Specialist this Thursday because I keep pestering them to find me a cancellation and see us asap. The poor little girl is miserable. She cries allllll.theeeee.timeeeee! She is always hungry. I feel just so terrible for her! I think the smartest decision is to remove her from all foods all together and let her little system relax. The longer you're exposed to allergens, the weaker your immune system becomes. The fact that it took Annabelle 9 days to get over a tummy bug that took the rest of the family 1 day tells me that her system isn't doing so great. She needs help and I am on a mission to get the poor kid answers soon. I promise her I will!

Im sure there are a million other misc. things that keep trying to knock our little family down but we keep picking up the pieces. This winter, for sure, hasn't been very nice to us at all. We cannot wait for spring and summer and I cannot wait to find answers for Annabelle. Mady has a birthday coming very soon! Scooby-Doo for her FOURTH birthday! I cannot believe it's already been FOUR years. Heartbreaking and heartwarming at the same time.

One day I will look back at the blink of these memories.. until then, Just keep swimming, Just keep swimming...

Mommy wants to sleeeep

Mady knows no volume control. I've been around painfully loud other kids, but when they are not around.. I swear Mady is the loudest thing I have ever heard. Although, she has the most precious voice and I can't get enough of it.


Im laying in bed this morning.
AK hit the alarm at 5:50a :SNOOZE:  6:00a I moaned "nuh..huh... not yet" :SNOOZE: .. 6:10a :SNOOZE: he told me to roll over and we curled up until the wretched thing started playing another obnoxious country song too early in the morning. Finally he gets up and lets the dog out, turns the shower on and comes back to the bedroom. Kisses me on the forehead and says, "5min. That's all you get. Im jumping in the shower now, you join me in 5min!". Those five minutes of the bed to myself, knowing I have to get up very soon. I savor every second of the perfect balance of warm vs. cool bedding, fluffy blankets and all the pillows. It's Just Heaven.

90 seconds into my last five minutes....

I hear tiny feet running down the stairs and fly around the living room, all the while screeching:

MOMMY! DADDY! I NEEEEED TO GO POTTTTTTTY!

She bolts thru the bathroom door and yells for daddy to help her QUICK to get her jammies off so she can potty.

Mady: What are you doing in there? Are you in the shower daddy? Are you washing your hair? Where is mommy? Daddy, where is my mommy?
AK: She's in bed. Pleaseee be quiet sweety, mommy is still sleeping.
Mady: Oh you want me to be quiet because mommy is sleeping? Ok.
......she talks consistently the rest of the time about any and everything that comes to her mind. You don't even have to respond, she just keeps talking!

another solid 3-4min goes on and for some reason she doesn't pee / can't / most likely, already did before she made it to the potty. She comes into my bedroom.

Mady: Mommy. I couldn't go pee-pee on the potty, I tried but I couldn't go.
Me: That's great sweety.
I can't even open my eyes. please, pleaseee, i love you child. no talking. 30seconds. silence.
Mady: Are you still sleeping mommy? I stayed in my bed all night, are you proud of me?
Me: Of course I am hunny, thank you. Mommy is tired, shhhhh
Mady: Will you turn cartoons on for me in the living room please? Im going to go to my chair and get my blanket, and will you get out of bed and turn the cartoons on please?
Me: Yesssssss.
I surrounder. I know I have exhausted my 5min time allowance already, but I should be able to dispute that because I never got the perfect sleep that I counted on!
Mady: You're my best friend mommy, my best friend in the whole wide world.

And she runs off to the living room. Messy hair. long sleeve shirt on with no bottoms or underwear at all. The sweetest voice you will ever hear, even when you want to hear nothing with your eyes closed at 6am on a 35 degree Tuesday morning. I will miss these exhausting chaotic start to our days, I know I will.