More Pain, Fevers have begun again and ..Blood.

Here we go again.

Belle is indeed heading back downhill. The few weeks of stability were nice, they weren’t roses and sunshine but they were closer to great times than we have gotten in a long while. The last couple days, as I have mentioned, Belle has struggled with pain, sleepless nights, shivering etc. Yesterday she continued the vomiting but her temperature also started moving rapidly again. This time it stayed high but continued to spike and drop. All the while her temperature was moving and she was getting cleaned from the vomit – she couldn’t stop shivering. It took quite a while before the shaking would subside and temperature would slow. She gave up around 2p from sheer exhaustion and didn’t wake up until 730pm. When she woke up, she was a bit more monotone than her usual self and extremely pale. She enjoyed playing around though and enjoyed a few apple snacks. While we were cleaning dinner, Annabelle managed to sneak a bite of a turkey burger.. I caught it quickly after she put it in her mouth but it was a struggle to get her to spit it all back out. I wasn’t overly panicked, I mean really, what can I do once it’s happened? At least it wasn’t beef (that she’s highly allergic to!). We try very hard to watch her like a hawk.. but a sneaky child that is almost 2yo, it’s almost an impossible mission. She has gotten a hold of something she shouldn’t have, maybe twice in almost 6 months.. I’m thinking that’s pretty impressive, at least I would like to tell myself that.

Annabelle went to bed without a fight around 845p and slept most the entire night. She woke up this morning however, hysterical. She was hitting herself so badly it terrified me. Her tears wouldn’t stop falling and she could hardly catch her breath from whatever was hurting her :’( AK is working so much lately and he wasn’t home. This morning was the first time that I truly felt like I didn’t have control and I started to panic. Her pain was more intense than I have ever seen.. and it wouldn’t stop. I held my phone for several minutes waiting to hit the final ‘1’ of 911 for help. Finally.. she slowed down. It was 6am and I was standing outside on our back porch, it took her breath away and she exhaled. I don’t know what it is about my kids and the outdoors.. but that seems to do the trick sometimes when nothing else will help. I brought her shaking little body back inside as I held her as tightly to my chest as I could. I had both of us wrapped in my robe from being outside and she clung to me like a monkey with her head on my bare chest, moaning. She wasn’t interested in a cup, juice or snack, she wouldn’t let me sit down, let alone go into either of our bedrooms – so we just walked. I walked with the side to side sway, one arm under her butt and another holding her head close to me and we started making our usual laps around the house. At times she would lash out and cry, and then she would soothe herself back to a moaning whimper. Finally after almost an hour, I managed to get her to lay down in the bed tightly next to me and we watched Doc McStuffins.. then Mickey Mouse Clubhouse.. Mady joined us in the bed… and then the Dog. I laid there far too long with all my girls and prayed and prayed and prayed, this episode would never plague my daughter again – in her lifetime! I didn’t know what had happened, all I knew is that she was hurt and we were both equally terrified and couldn’t help one another. I never want to live that again.

I got myself ready as both girls (well, dog included, all three girls) laid in my bed. Annabelle started pulling at her clothes again so I took her upstairs to change her diaper. Blood. That explains a lot. I'm confident this is why she was in so much pain this morning. I don’t know exactly where the blood is coming from this time.. I can’t imagine it’s already from the small bite of Turkey burger last night, but I wouldn’t be surprised. I don’t know if this is something that has been manifesting over the last several days and the culprit to the pain.. and it’s just now presenting itself. I just can’t be sure.

The doctors are informed. I called them yesterday afternoon after the temperature fluctuations, vomiting and persisting shivers. And I left another message this morning regarding the mornings chaos and blood.

I am so scared because I have no idea what this means. The last time Annabelle started going downhill like this, it continued to escalate until it finally hit a plateau. I don’t want my baby girl to decline anymore than she already has – I fear what the next step of downhill could mean to her. I was terrified a few weeks ago and was able to breathe finally the last two weeks… now my heart is in my stomach and throat, and beating 548531564mph. I consciously have to remind myself several times a minute, “Ashley.. breathe, exhale..” because I continue to forget. I keep holding my breathe. I can’t sit in my chair and relax, I am sitting so high, I keep staring at walls with the eyes the size of quarters and an expressionless face and forget to blink. I feel like I am walking in the thickest fog.. and while I am terrified of this walk, I am also terrified of what happens when the fog is gone.  I have so much anxiety about the next minute that it’s eating me alive. Lord help my little girl, she needs prayers and answers. 

I am scared to death.

Shivering, Tired and overall defeated

For all the days we spend with our family smiling, giggling and making happy memories.. we stay prepared for the downhill fall that is always promised. Unfortunately, we are heading back downhill again :(

Saturday was a wonderful day for Annabelle but soon after the cookout she started showing signs of losing energy, her balance was struggling and muscles were becoming so weak. You could tell she needed to go home and get rest immediately. I packed both girls and brought them home. Annabelle enjoyed a bath upstairs but couldn't last more than a few minutes in the tub.. she needed to be out of the water and to lay down. Her bath water was very warm despite the blazing hot temperatures outside, but she struggled to warm up during her tubby & after her bath.. she shivered so hard as I dried her off. I decided to put her in warmer, zip-up jammies and she laid down with a warm sippy cup and was immediately asleep. She slept all day. When she woke up, she was again shivering. We headed to a cookout with family and the girls played in the pool. Annabelle had a wonderful time. However, if she wasn't in the pool, she was laying on me.. and again, shivering. I've kinda ignored this behavior over the past couple weeks and tried not to think much of it - but after this weekend I have started to watch a little closer at her behaviors.

Annabelle (and the rest of my family) slept almost 12 hours Saturday night!! I was so grateful for the rest and I knew the girls needed it too. Annabelle did get up a couple times, but she continued to go back to sleep with little fight and a sippy cup of Elecare. Sunday she spent most the day again, extremely fussy, irritable and exhausted. She was cold again. While driving down the road I noticed in the rear-view mirror her squirming and sitting in awkward positions, I turned around and her little lips were blue. The car wasn't cold, the air wasn't blowing on her and Mady said she was hot. I keep the cars temperature about 68 degrees during the summertime.. it was odd but again, I tried to look past it.

The last couple nights have been nothing less than utterly miserable for Annabelle. She isn't sleeping well anymore. She is waking screaming hysterically and in so much pain. She is mad... I mean, MAD during the nights. In her defense, I think we are all over this idea of having to wake up at 2am and hear babies crying, including her. She no longer wants a cup of formula, she doesn't want anything to eat, she refuses medication, she doesn't want to be held but don't DARE put her down, she isn't running a fever and her diaper is dry... but again, don't dare leave her. AK was up a lot with her last night and while he was in the kitchen attempting strategy #13 to soothe her, Annabelle ran into my room and climbed onto my bed. I laid her on my chest and she just weeped with an exhale "Mamamamamama..." she cried so hard as I rubbed her back and asked, "Annabelle, are you alright baby?" .. she shook her head NO and cried harder. I almost wanted to laugh because I don't know if she actually knows what that means (when she shakes her head no) but it was innocent and sweet to see her trying to respond. She laid there on my chest and refused to move. I prayed she would just collapse and fall asleep but it didn't work. AK finally came into the room and swept her into his arms. I gave her a kiss goodnight and he put her back into bed, crying :( There comes a point where we have done absolutely everything we can to help her, we cannot do anymore but give her love and comfort, we know she is exhausted and the best thing for her little body is to sleep. We could literally spend the entire night walking around the house with her in this state of hysterical crying. AK and I both have full time jobs and also have to get sleep (a joke, I know!). Annabelle fell asleep rather quickly after a few minutes of crying in her bed and didn't wake again for several hours later. Repeat process. I have to give it to Madelynne, she is a trooper and could likely sleep through a plane landing on our roof. Annabelle has only woken Mady once since they began sharing a bedroom together. Im shocked, and so relieved!

On another note.

Apples seem to be going well. We are only using prepared, purely organic, nothing added, apple sauce. I have found apple chips and we offer apple juice sometimes during the day to spice things up.. especially if she gets dehydrated in any form. Annabelle is enjoying the apples very much, I hope it continues to be a successful trial for her!!

Her bowels have been up and down however. Even with a fairly consistent diet and no dramatic changes at all, she is having many days with extremely loose stools and spends the entire day peeing through every diaper (soaking her bed... ugh, the laundry!) and then days where she rarely pees and doesn't have a BM for several days. There isn't any consistency at all. She is either constipated or has diarrhea. Urinates all her body fluid, or retains everything. I hope the doctor next week can also shed some light on this.

In the meantime, we are keeping Annabelle as happy as we can at home. We won't be taking her out of the house at all this week.. and likely not until her appointment next Thursday. Saturday over did it for her and her little body needs to rest, but mostly it needs to find some sort of routine. I hope this bout of painful days and nights is over soon.. I hope her struggle with maintaining her body temperature and the shivering is also short lived, or at least doesn't escalate and present itself with another issue. I pray for a continued successful Food Trial w/ apples. I pray this week does not continue to decline for Annabelle. Our fears and worries are quickly rising in our home while watching her. Prayer Warriors, do what you do best, please! We're ready for you again!!

Lemonade Stand, EoE Fundraiser Success!

Saturday was a wonderful success! Granted it was so hot, humid and intense heat that we all nearly suffocated - but we made it thru and so did many of our loved ones that came out to visit.

AK headed over first as I stayed home to get the kids bathed and dressed. While I was still setting up, a few people started to show up and browse.. Mady was a bit shy about her responsibilities to the lemonade but Annabelle showed no hesitiation to greeting anyone who arrived. Both girls spent a lot of time that morning playing with their own toys that we were selling in the yardsale. Annabelle decided she wanted to exchange the Stride Rite's she was wearing for a too-small-pair in the yardsale.. it's a good thing I stumbled past them in the line of shoes and snatched them back up quickly before someone grabbed them! ;)

As I was unpacking the last couple things, I recognized a familiar face. . I blinked twice before I realized it was one of my girlfriends that came out with her new little girl to visit! I almost squealed with excitement (but composed myself in efforts to not look crazy), minutes later I recognized another familiar face(!!!) I don't know if it was the lack of sleep deprivation, heat, emotions of life lately or what - but as I stood there talking to two of the most beautiful, selfless mommies that drove a HIKE to Prince George to see me, my eyes literally started to water from the intense beating of my heart. I smiled thru the tears before I let any fall and changed the conversation several times to keep myself distracted from the emotions of what today would bring for my little girl.

The day continued just as the morning began. The humbling love that Saturday brought to my heart and my family is absolutely indescribable. There are no words to describe how grateful and loved we felt to see so many people that have been thinking about and praying for sweet Annabelle. There were so many faces that I hadn't seen since high school that came out, friends that we visit often now, family that visited to show support and buy lemonade and loved ones that came out just to lend a helping hand in any way we needed.

Please please please hear my words when I tell you how grateful and blessed we are to have each and every one of you in our lives and keeping our family in your prayers. Thank you, with every ounce of love I have to give. . . for every one of you that came out and brought an even bigger smile to my face. I was caught by complete surprise - it was truly one of the best days I have ever had. All I want as a mother are my baby girls healthy and happy, and to see selfless friends and family that I haven't seen in so long, take their time away to support us and also wish for my sweet girls health and happiness ... it absolutely floods my heart and soul to tears. THANK YOU!





The icing of the cake Saturday, was introducing Annabelle Grace to sweet Joshua. Joshua's mom is one of the most amazing women I have had the pleasure of meeting. The two of us just recently met face-to-face a week or so ago, but we have been exchanging emails and phone calls since March. Dawn has picked me up and answered my concerns on some of my toughest days when battling Eosinophilic Esophaghitis. Her son Joshua, is also plagued with this disease and together Dawn & Joshua have been battling this longer than Belle & I have. Dawn is full of the most helpful, educated advice and shared experiences. I just knew Joshua would be equally as amazing as his mother - but he blew us all away with just HOW incredible he really is! When you see him, all you want to do is wrap him in your arms and squeeze him. He is the most precious, strongest little boy. I kept holding his hand and smiling to tell him "Gosh I love you", he probably thought I was a crazy woman , but that's ok. I kinda am. Annabelle and Joshua were precious with one another. They played with toys, and even snatched them from one another in perfectly appropriate toddler style ;) It was humbling to see our two babies, two children that have such terribly sick, hard days where they fight against their body to just make it thru tomorrow  - and somehow, they still manage to wear an adorable smile, high-five and share toddler hugs around perfect strangers. The spirit of these EoE kids is breath-taking.

Dawn and I chatted about some things we have been meaning to discuss, and have committed to a lunch date this week to continue to catch up in person!!

Annabelle is currently trialing Apples, and Joshua just lost Apples from his diet :( for that, Dawn gave Annabelle all her leftover safe apple treats. One of the goodies she brought were Apple Chips in a bag. Annabelle was seriously beyond herself in heaven when she first popped one in her mouth!! Andi and I both almost cried as we watched how happy she was at EATING apple chips! She didn't slow down.. she ate every one, didn't waste a crumb and then proceeded to lick the bag. It's a quick reminder at how much we take for granted in life when you see a child licking a bag of apple chips because they have never had chips, a food like this, apples, let alone foods for so long. Our hearts melted so fast - Andi immediately found where we could buy more on Amazon and orders were placed! :)




Saturday was a better success than we could have imagined. We sold a little over half our things, poured over 4 pitchers of lemonade, sold a bazillion donated baked goods and hugged so many loved ones, family and friends. Annabelle was a trooper in the heat and took many breaks inside, I was surprised she stuck it out for so long and I am so proud of her for doing so. I was happy that my friends that haven't met my girls, were able to meet them and my husband. I was happy most of them were able to squeeze a bit of Annabelle and feel her squishy incredible, loveliness as you hold her in your arms and she cuddles next to you. Everyone deserves that :) I was blessed to meet many of my friends children that I haven't met and humbled to have so many close friends and family make the trip out in support of us and our awesome lemonade as well. We couldn't have done it without all of you and Annabelle thanks every one of you.

THANK YOU!!

Yardsale and Lemonade Stand!! Come show your support!!

I cannot begin to explain the excitement I have over tomorrow's promised fun!

AK and I have been needing to have a yardsale for a while.. doctor bills are stacking higher and higher and somehow, August has already appeared on the calendar. We decided that we needed to have a yardsale for so many reasons, but what we didn't know is how big of a heart our 4-year old has and her intentions.

When cleaning her room and playroom, I asked Mady to help me sort through the toys and things that she no longer plays with and find some things she wants to give to other little boys and girls to make them happy. She was a trooper and chose LOTS of great things to contribute to the yardsale. I then asked if she wanted to sell Lemonade while we were having the yardsale and people could buy her lemonade and she could raise money. She piped up so quickly and said, "Yes! Maybe if I sell lots and lots of lemonade, we can get so much money and help my baby sister get better!" It kinda broke my heart that she knows money is a sad way around everything in this life, but at the same time, she is right. What Annabelle is battling currently is so costly, it's killing us. All the boys and girls that are fighting the heart-wrenching disease of Eosinophilic Esophaghitis deserve so much more. And sadly, money buys answers, research, doctors and a diagnosis' these days.

We are selling Lemonade tomorrow on behalf of all boys and girls with Eosinophilic Esophaghitis. Mady says, "we need to help them so they can eat food and not have such bad boo-boo's in their tummy's anymore. they need help so they don't have to cry all day when their tummy hurts and they don't have to be sad because they can't eat". 

It kills me that Mady has to be involved in this. It isn't her responsibility to worry, fear or want to raise money, but it's heartwarming that she DOES want to be actively involved and wants to help her sister. In many ways, I wish I could lie to Madelynne and shield her from diseases like EoE and Mito, but that wouldn't be fair to anyone in our family - not Mady or Belle. The truth is that Madelynne has to watch her baby sister cry, vomit, scream, go through countless hospital visits, surgeries, biopsy's, she cannot eat, she cannot go outside and play, she cannot go to school / daycare / church or Chick-Fil-A, etc. Mady lives side-by-side with her sister and watches everything. Our home isn't sugar-coated against this nightmare and Mady wants to help. If that means by stirring a pitcher of Lemonade and pouring $.50 cups, provides my 4 year old with the heart and feeling that she is helping contribute to making her sweet baby sister feel better - Well then darnit, we're selling lemonade! This has nothing to do with money, but everything to do with allowing the children to feel involved and giving them the gratification that they are making a difference in this world, and directly in the lives of people they love.

It Gets Better . .
Just when I didn't think my heart could beat any faster about how wonderful of a thing this Lemonade Stand will be, I got a call from a dear friend this morning. I have made two, I repeat TWO friends in Richmond that have children with Eosinophilic Esophaghitis. They are both little boys and both around the same age as Annabelle. I cannot wait until the birthday's with these beautiful little children in which we don't serve birthday cake when blowing out candles. There is a sense of normalcy they provide when I talk to these moms, they justify my fears, worries and frustrations when living with a child with EoE. They understand, they get it when no one else can truly feel the same way. One of our friends has decided that she is bringing her son, Joshua and he will also be participating to help sell Lemonade on behalf of his and Annabelle's shared disease. The cuteness is absolutely on overload at these two little babies. The pictures will be priceless and worth a million bucks! I cannot wait to share them with you all, even better... come out and support them!


If you are local and in the market for anything baby, come shop! And if not, I know the temperature will be in the 90s, so I KNOW you will be thirsty. Please come by and buy some lemonade from these sweet kids to help support them!

We will be setup in Prince George. 7500 Brookshire Dr, Prince George VA. On the corner of Courthouse Road and Brookshire. About 5 minutes from 95 and 8 minutes from 295. Make the trip out and visit some of the cutest little fighters you've ever met.

In addition to Lemonade, we will also be selling donated baked goods and tasty treats to snack on!

Yardsale items include a HUGE variety of things from kid stuff to antiques from our families that are wishing to sell. 

I have lots of tables setup of girl clothes, mostly sizes below 2T but many many others things that are larger. 
Most brands include Carter's, Children's Place, Target, Kohls, Crazy 8, Puma etc that are selling for $.50 - $1 each.
Boys clothing of all sizes below 4T
Higher End Brands include: Janie & Jack, Nordstrom, Gymboree, BabyGap, Stride Rites, Pediped, Nike's, Robeez, etc that are priced individually
Cloth Diapers, supplies, wet bags, accessories
BabyLegs
We have about 15 jackets and coats of all sizes.
A HUGE bin of precious Newborn girl items.. clothing & accessories
Pottery Barn Kids Infant Bedding
Pottery Barn Kids Toddler Bed w/ Mattress
Chicco Highchair
Pack n Play
SEVERAL excellent large toys - that would make for great Christmas presents... we know, because Santa brought most of them ;)

I am also selling a good handful of women's clothing, mostly brand names Express, NY&Co, Loft, (sizes from XS-M) etc. Shoes size 8-9. Accessories.
Maternity Clothes, sizes S-M
Mens clothing, shirts size XL and Pants 36 x 32. 
Household items: Couch pillows, lamps, shower curtains, linens, pictures, art, etc.

Antiques, Tools, and much much more. We have a few families participating and so there will be a great variety of things to shop for :) 


Again, everything we are selling and doing is an effort to support Annabelle on her incredible Journey through this battle she is fighting with everything she has. We hope to see a lot of people and familiar faces and I hope to meet a lot of new faces that have been lifting Annabelle in prayer as well. Thank you all for everything again. Let's cross our fingers for beautiful weather tomorrow and we cannot wait to share pictures about our day!

Disclosure: Our babies that are battling EoE can move very very quickly from a great day to a terrible day. Outdoors isn't typically their friend and within minutes their health can turn sour. Annabelle is having a great day today and we hope for the best tomorrow. That being said, if she is showing any signs at all of struggling or she isn't doing well during the yardsale, she will be going home to rest - the same will go for sweet Joshua. Mady will be proud to run her mini-business alone. 

It's our goal to have the little ones outside and participating as much as they can, but please be mindful and respectful if something happens and they cannot be there. 

Thank you all for understanding :)

Prayers Answered! A semi-healthy Immune System!!!

This week has been a little bit of a roller coaster for Annabelle. Not all terrible, but not wonderful either.

Again, I apologize for the lack of timely updates - I have been struggling myself processing what is happening to our family. It's getting harder as the time passes without answers. I am watching how this is affecting Mady, how the fears and stresses are putting a blanket over our family and we are trying our hardest to stay strong during this time. AK has been working out of town a lot lately, Mady has been testing boundaries and Annabelle has been showing signs of being sick.. not to mention the touch-and-go of our food trials. I have vowed to myself to only take each day, minute by minute, then hour, then day and not look ahead at next week because I will be consumed. It's quite a conscious effort and requires daily - sometimes hourly self-pep-talks, but we are going to make it out of this. I know we will. 

While AK was out of town this week, the girls got sick. It started with our sitter and myself, then Mady started running a fever and I just knew there was no turning back from protecting Annabelle. Usually if one of us are sick - the entire family is quarantined away from Annabelle in order to protect her immune system. There was no escaping it this time. Monday night and Tuesday Belle began running a fever. She was vomiting and generally uncomfortable but still able to get around. She screamed her little head off all night Tuesday night. Her fevers were impossible to maintain but finally stopped moving around 9pm and stayed about 99.2. She had a couple more spells of messy diapers and vomiting episodes but fortunately she never stopped eating and drinking which was a huge relief. This was a HUGE test for Annabelle and her immune system. The last time she caught a 36 hour bug, she was sick and couldn't stop vomiting or passing liquid stools for SEVERAL weeks. That illness is what brought us to our first diagnosis of EoE. The doctors all agreed there was something very wrong with her immune system and we discovered Eosinophilic Esophaghitis was the culprit. This is the first time since last March that Annabelle has gotten sick and I prayed with every single thing I had in me that this wouldn't knock her down and hurt her too badly - this was the moment myself and our doctors have been fearing for months..

I am beyond happy to say that by Wednesday, Annabelle was ALREADY bouncing back to her normal.. toddler self with a good day. My heart flooded with relief. This spell of a tummy bug really provided us with a lot of answers and unknown fears. It tells us that her immune system is working better than we hoped and with that - it solidifies how strong of a little girl Annabelle is. This surely does not bring us out of the woods. Eosinophilic Esophaghitis is an auto-immune disease and anytime she gets sick will become very difficult for Belle. But today we are grateful to learn that her system is in much better condition than we all previously speculated because of her latest symptoms. We are feeling SO, SO VERY BLESSED!

I checked on her in bed about a million times over the next couple days. When I tucked the girls in for the 100th time, recovering them with their blankets as they peacefully slept.. I curled myself into a ball with my back against Annabelle's nightstand and hugged my knees as I watched my baby girl sleeping. I watched her inhale and exhale.. I smiled when I saw her little lips sweep into her own smile and my heart flooded with warmth when I heard her coo from dreamland. I swear I could watch her sleep all night. I sat there and thanked her. How weird is that to 'thank' your child for fighting a sickness? I prayed for her, I thanked God and the Angels he sent to wrap her tightly during the last couple days, I thanked him for the strength he gave me to keep my chin very high and not get discouraged each time I was holding her little head as she was vomiting.. I just felt so reassured 'everything will be ok, this isn't the end.. it really isn't'. I thanked Annabelle for her incredible bravery and the strength I knew she had to put forth to get thru the last couple days when I KNOW her little body is exhausted beyond belief. She could have easily laid on the couch and sobbed like she does on really hard days, but she didn't - instead she picked herself up and with every ounce of energy and fight in her, she made it through a stomach bug that could have knocked her down, with flying colors. What an AMAZING child she is. If it were me, I would still be in the bed moaning over feeling cruddy. Kids are so resilient and Annabelle leads that strength.


Wednesday morning Annabelle began Speech Therapy with her new therapist. I was fortunate enough to be able to meet her before going to work. I needed to sign some paperwork and meet her personally; we discussed what my goals are for Annabelle and developed some immediate goals and stretch goals. I believe Susan will work wonderfully with Annabelle and I cannot wait to see how she progresses through this next level of therapy.

I have been speaking with our pediatrician a little more lately this week too. I didn't contact her during the tummy bug, but I did want to update her after it was over and brag about how well Annabelle handled it. We discussed the failed Food Trial of Sweet Potatoes and both agreed that if she continues to do well on apples, that we will not introduce another food for a long while.. at least another month or two. We are getting ready to enter the flu season and I cannot add or begin another trial during that time. If we do introduce another food, it needs to happen fast - but I want to make sure she is still tolerating apples easily before we make that type of decision. It's enough to make you want to pull your hair out.

Upside and Downside to Food Trials

Now that Annabelle is eating food again, she doesn't understand that the ONLY food she can eat is specifically what we put in front of her.. just because she is eating a food, still doesn't mean she can eat what we or sissy is eating. It's become quite frustrating. It's also led Annabelle to trying to be sneaky and sneak food when someone isn't looking. If you turn your back, she bolts into the kitchen and tries to find food and hide to eat it. (I know, freaking heartbreaking), taking the food from her and then offering the same applesauce absolutely breaks her heart and sends her into pouring tears in less than 3 seconds. That being said, it's actually been harder than I expected a food trial to be. I didn't really consider this being a result of offering her food again.. it was almost easier to not give her anything at all. :(

The other hard part is while she LOVES the new taste of apples, in any and every form you can imagine - that means she is no longer interested in her Amnio-Acid Based 'Medical Food' that tastes like vomit. I DO NOT BLAME HER! We are trying diligently to only offer formula before offering anything delicious so that she is still taking in enough nutrients from Elecare. Our pediatrician and GI both have a lot of concerns about her quickly becoming malnourished again because of the Food Trial process. Apparently this happens a lot.. kids get a taste of delicious food and only want to eat that - however they cannot thrive on apples alone and still need the nutrients from the Elecare to stay nourished. It's getting easier, and really the best time for me to get formula in her is during the nights when she wakes crying. She hasn't slept through the night in months.. but usually when she wakes, if you can calm her down quickly, she will take a cup of formula and try to go back to sleep if she isn't hurting too badly. If she's hurting, she will not eat (obviously). Each day is a battle but I believe we are getting through it ok. We have a great sitter that makes it a priority to fatten Annabelle on a daily basis, and for that we are thankful because she's doing a great job! Just one day of not getting enough nutrients quickly manifests into days and days of malnourishment and she refuses to eat again .. it then becomes a true heartbreaking battle. One day at a time.. with each good day, allows us to have a better tomorrow.. with each bad day, becomes a snowball of rough days. Staying 2 steps ahead is truly the only way to keep things moving smooth (one of the many lessons I am learning as we go).

Yesterday and this morning, Annabelle is having great days. She gets tired very, VERY easily. When she plays hard, she crashes hard.. when she has a relaxed day, she moves at a pretty steady pace. Last night she played her heart out, and crashed just as hard. In a lot of ways, it's typical toddler patterns and then in so many ways it's terrifying to watch how fast her body depletes of energy from doing simple kiddo tasks.

August 22nd. August 22nd. August 22nd. I am already nervous with butterflies! Here's to fingers crossed we can stay out of the hospital and safely ride into August 22nd when we meet with Dr. Teasley and her Neurology Team. I pray for only easy days until then..

EEG Shows Zero Signs of Epilepsy

Annabelle had a terribly rough night Thursday in the hospital. In her defense, there isn't anything warming and 'home' about a hospital baby-jail / crib. And to add the worst head-dressing on her noggin and beeping machines, I really don't blame her.

She woke at 2am in pain and then never rested much for the time between then and the rest of the morning. She did fall back asleep around 6am and slept for a good hour and a half, of course I struggled to follow suit. I just prayed the day would end soon for the both of us.

Doctors were in and out of our room most the entire day. I have to say, we had the best experience on the Epilepsy Monitoring Unit last week at MCV. The nurses and staff were beyond wonderful. The Residents seemed very knowledgeable and intrigued in Annabelle's case and eager to be part of our stay. The nursing staff made the most impressive accommodations around Annabelle's feeding needs. I was very grateful and impressed, they made the stay as enjoyable as it could be under the circumstances.

So What's The Word?

Unfortunately, what I didn't know is that they were only looking for signs for true Epilepsy. I never thought this was the case (the only thing they were looking for), but I guess it's good to know now that this is NOT what is happening. The doctors told us there were no signs of Epileptic Seizure activity or concerns about damage from Epilepsy. Because Annabelle didn't have a true 'episode / spell' while we were there, it is hard to determine what exactly is causing the episodes that she is having at home. The doctors asked if we wanted to continue to stay for a couple more days to hope to capture an episode and I declined. If there weren't signs after 24 hours of the most dangerous scenario from seizures (true Epilepsy) then I wanted to go home.

While this did not give us a "Diagnosis", this is really great news. If the neurologist was able to walk into our room and tell us Annabelle absolutely has Epilepsy and it's happening this frequently, that would be devastating and also not helpful in all the other areas we are having problems. I am grateful for this news. This time fortunately, a negative test / procedure is a positive light for Annabelle.

The reason we wanted (Doctors wanted) Annabelle to have this testing done is to rule out our final biggest explanation for what is happening. At this point, we have explored most everything we can to explain what could be wrong with Annabelle and her little body. With each negative test result, it provides us with even more reason to continue our route to meet with Dr. Teasley and her team to explore Mitochondrial Disease. We are scheduled to meet with her and the rest of the Neurology Team on August 22nd. 


I asked the doctor to let us leave as soon as the discharge papers were ready, shortly after, the EEG Technician came back into our room. The moment Annabelle saw him, she ran into my arms and cried so very hard. I felt terrible for her, I just knew removing all those probes and monitors were going to be terribly painful again. AK was at the hospital Friday morning, he's never been part of these painful procedures before.. and to be honest, as much as it truly sucks being the only person to go through this alone - Annabelle is a daddy's girl and I feared if he were in the room then she would look to him for HELP that he cannot provide. He decided to stay and help, although I cautioned him about what he was going to see. I can't say it was good for Annabelle though.. just like I feared, she gave up on me and immediately started begging daddy to help her. He too got to let her down in her pleading, as she laid there with both of us holding her down as the EEG Tech began doing his work. :( She put up a helluva fight however but fortunately it didn't require strapping her back into the make-shift straight jacket. He used a solution to moisten each area that was attached to her noggin and with a bit of scrubbing, they began to pull off. She was a mess and again, exhausted from her fight. I washed her hair before we left and AK and I gathered all our things and made our want to the elevators. Annabelle looked like a beaten, defeated little zombie with a red, puffy, swollen head and bloodshot eyes. She truly looked like she had just been thru hell, and really, she kinda had.

She cried the entire way home and when we walked through the door, we immediately put her into bed. Mady greeted me at the door with a frown and deeply apologetic for the way she behaved the night before. She asked me to kneel down to her level and she apologized and gave me a big hug and kiss. I didn't take it any further, I just let her tell me the words she wanted to say and told her that I forgave her and I loved her too, so much.

The rest of the weekend was good to Annabelle, she caught up on plenty rest.. and slept, a LOT.

You know, when I watched the EEG Tech begin the setup for the test and I stood beside my daughter as she screamed her head off for over two hours, I kept telling myself "He isn't hurting her, she is just mad and upset that she cannot move..." I was wrong about that. He was hurting her. Each and every single probe of the billion that he put onto her head left bloody scabs all over her head. Her forehead has circles of bloody scabs and there are the thickest scabs all OVER the top of her head in her hair. My heart absolutely shatters. I cannot imagine more of a terrible place than what my daughter is going through. . . to be strapped tightly onto a board, unable to move for over two hours as doctors slowly freaking torture you around your head. To put salt in the wound, your mommy is standing right beside you and won't help!! :'( What have I done? God please, this has to stop. It really does. This little girl cannot go through more than what she already has. This is beyond horrible. Hear our prayers and help us reach the end of this nightmare soon! :(




And after all this, Annabelle still greet strangers and anyone that walks into her house with a huge smile and the biggest, strongest hug and kiss you can imagine. How this HELL she has endured hasn't deterred her from the incredible little girl she is, I don't know. 

All I do know is that Annabelle Grace is stronger than I could have ever imagined. She's stronger than I could ever be.

A few added pictures from the visit at MCVs, EMU.

Sneaky little girl and her attempts to find food.

Breakfast before heading to the hospital.

Bath time in mommy's bathroom while everyone else is getting ready!

SKYPE with Aunt Kristy and Char-Char, they wanted to sing the Tigger-Song for her. And it brought much deserved smiles :)

"DESPITE ALL THE RAGE, I AM STILL JUST A BABY IN A CAGEEE!!"

Sissy came to visit and color

There was a crazy storm outside and we had an excellent view to watch it cross Richmond :)

Sweet Dreams baby girl

Child Life brought a pup to visit.. Annabelle wasn't feel very good to enjoy :(

This little girl is every bit of my strength!

Getting ready to take everything off

The removal process was less than fun :( Time to go home baby.

Day 1 - EEG Nightmare :(

I'm laying here in a dark chilly hospital room. The tv is on for light purposes only. I can hear monitors beeping and the video monitor clicking every couple seconds in our room. The blood is probably rushing to my head because I am laying in my bed backwards purely so I can have a direct view of my baby girl in her crib. I need to be able to see her. Shes laying flat on her back with both arms spread to each side. Her little body is exhausted without a doubt. I'm praying she is getting healthy rest and the night treats her well.

Today was worse than I could have imagined. My instincts were right again.. I've been nauseated for days about today and it was justified. 

Mady was hysterically crying and begging me not to leave when I had to walk away. Annabelle clung tight around my neck the moment we walked thru the hospital doors. And within 30m of arriving in our room, the straight jacket, board and sheet was pulled out to strap Annabelle down.

What I didn't know is that it would take over two hours to assemble the leads for the EEG onto her head. I didn't know the process involved three painful steps. I didn't know they used frickin cement equivalent-like glue to adhere the leads and I didn't know my daughter literally had two hours of a fight in her!!

We never used any anesthesia for this procedure. Annabelle finally cried herself to sleep for about 5 minutes total which allowed everyone in the room to take a step back, stretch our backs and exhale for a split moment. 

Ak brought mady this evening to visit. He delivered me dinner despite a worthless appetite. Mady has never visited Belle in a hospital,  the only experience she has is from a couple weeks ago at the allergist. Today she seemed really concerned about her sister but at the same time you could tell she was upset with me. Mady is a mommy's girl and this journey is really taking a toll on her and my relationship. Her choices and attitude upset me so much that I asked ak to take her home immediately. He did and I'm left in this hospital broken hearted in more ways than one.

Both my little girls own my heart and soul and neither of my babies are getting what they need from me. My heart is shattered tonight and I'm so lonely :,(

I curled Annabelle under my arms and gathered all her things.. gigi, lambie, cup and EEG bag and we walked.. I rocked her in my arms until my back felt like it would break and my arms were literally going numb. Finally I laid her in the crib and I climbed in with her. She snuggled as close as she possibly could and I pulled her in even tighter. I rubbed her cheek as her face laid against my beating heart and I silently cried.. and cried.. and cried and cried. She couldn't see me and the lights are out. I hope the video cameras couldn't pick it up either. I cried until my tears ran dry. 

Around 8pm she began to twitch and I pulled away to watch her. I sat up and started reading her cues. She was staring off and looked ghostly.. I called her name several times.. nothing. I waved my hands in front of her face.. nothing. I yelled ' Annabelle, are you alright?!'... nothing. I hit the panic button and immediately the tv turned off, the lights all came on and the nurses entered our room. Annabelle broke her concentration after a few more seconds. Once she seemed semi conscious, the nurse performed a couple tests. Annabelle seemed to be tracking the lights but was still acting very odd to me. She was drooling down her face and simply watching everything around her. We decided to do vitals and she still didn't budge. She just watched as they took her blood pressure etc. I have no clue if what I saw was a concern, but hey kid.. do it here while the monitors and cameras are rolling!

She's asleep and resting now. I am personally too nauseated to even think about sleeping. My heart has never sank so deep into my stomach as it did today watching my helpless daughter lay strapped to a board for two hours. She begged and screamed "MAMA!! PLEASEEEEE!! BYE BYE, BYE BYE!! SHOESSS, SOCKSSS! MAMAMAMAMA NOOO!! PLEASEEE MAMAMAMA PLEASEE!!" I can't allow the tears to fall as doctors are surrounding me. I can't let my child see me as upset as i was. But it also hurts so badly to continue to not be able to be there to help her when she needs help. I wanted so badly to save her :( I was begging and screaming inside the entire time for it to all be over! God please, please help this little girl!! Please wrap her in your arms right now.  Cant you tell? She needs you :,( I'm doing all I know to do for her but I cannot do any more. Please comfort this baby girl! :,(

I have dropped Annabelle's crib rails more times tonight than I can count. I keep wanting to reach in and touch her skin. Its warm.. Im grateful. Her warm, soft skin is magical to me somehow. It tells me she is alive and well.. she's so pure and with closed eyes, she's resting. I enjoy these quiet, still moments watching her. I am alone and quiet in my own prayers and thoughts. Holding onto my daughters hand and tiny warm wrist, I feel connected by three to God as I am speaking to him. I am praying so very hard that this too is part of his plan. Please allow this procedure to provide our family with answers. Please take the pain and anxiety from my babys body tonight and bless us with answers so we can continue to help her. Please God watch over Annabelle. She's incredible and has so much to give to this world. She cannot give if she is being confined to this body that's failing her.. please heal her body. Please send me strength to balance this nightmare with my family and do justice to both my girls. Please watch over all of us and most importantly, hear the prayers with Annabelles name. They're being flooded your way and they're being sent by your own angels here on earth that love Belle. Please hear our prayers and protect baby Annabelle. 

Tomorrow morning, tonight's EEG will be read. We will know tomorrow how long we will be here. At a minimum, we will leave tomorrow afternoon. I am hopeful Belle gets rest thru the night, she deserves every bit of playful dreams.. I hope she's having a huge slice of chocolate cake and ice cream in dream land right now...

Sweet dreams, xo