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.