Christmas Time

Christmas this year was night and day compared to last, and I thank God so much for it. Our family hosted multiple Christmas parties at our house to accommodate family and provide comfort and security for Annabelle to be in her own home and nap when she wants, take her feeds without having to use a backpack and just run around like a crazy kiddo if she wishes. She did wonderful. The holiday has completely exhausted both girls but it was worth it. 

Santa brought Annabelle a pink puppy and train table for Christmas. Santa brought her sister a dollhouse. What happened Christmas morning? Annabelle played with the dollhouse and Madelynne played with the train table. Figures. Both girls enjoyed their Christmas, albeit a small one with just 5-6 gifts each (which is MORE than plenty considering family spoils them), but it was perfect for us.

Shortly after Christmas, Annabelle began feeling cruddy again. I started keeping a close eye on her the day after Christmas because something wasn’t right. Bedtime and nights are getting worse by the day. She’s miserable at night. She pleads to not have to sleep alone. She coughs her little head over and gasps for air. She retches with so much force, that I fear she’s going to further injure her nissen. I just wish I knew what to do to comfort my little girl.

Friday night I didn’t want her sleeping alone, at least I didn’t want her to fall asleep alone as her cough was sounding horrible. We kept her in our bed and around 1a AK woke me up in a panic. Annabelle was absolutely roasting hot with a fever, her limbs were like ice. I asked AK to grab some meds and a cup of juice or water while I tried to wake Annabelle. She immediately started crying and hitting her head and pulling her hair, I imagine she may have had a headache, she then began pulling at her shirt / jammies so I took them off to cool her down. Once I got her to settle down and into my arms in the bed, she then began retching to try to vomit. My heart started to race! I wrapped Annabelle in my arms and ran to the bathroom where we weren’t only carpet / bed and if she needed to vomit, at least it would be on a hard floor. AK finally came back to the bedroom and I yelled for him to get me an extension and large syringe asap so she wouldn’t further injure her nissen from vomiting. Seconds felt like hours. I hooked her up and her stomach was able to release the built up pressure. Annabelle was so weak. She couldn’t lift her head, she couldn’t lift her arms. She wanted to drink her juice but couldn’t even mumble the words to have some. After feeding her a few sips and flushing her tubing with meds and water, we made our way back to bed. She asked to see Mickey Mouse Christmas for the 2304612938510 time this week. AK and I watched our fighting baby girl together as the moon faded into the sun. Her fever didn’t take long to go away and by the next morning all she had remaining was a simple cough. Our minds were in a daze, but we weren’t shocked. Crazy things like this is just life with Annabelle. She keeps us on our toes and guessing, she’s always throwing curve balls into an ordinarily calm day.

The rest of our time off work / out of school and home with just our little family was wonderful. We spent a GREAT deal of time in our jammies and sweatshirts. We avoided leaving the house at all costs and we watched plenty movies and played too many games to count. Our nights were spent playing Uno with Mady after Annabelle went to bed, and sometimes our days were spent with mommy and daddy taking a nap while the girls played their handheld game systems with headphones on. (Parenting win!) It was a wonderful time home with just the four of us. I enjoying spending all the one on one with each person and it was just what we needed.

The cough persisted however. It’s becoming worse and less manageable. My initial fear was the flu, but she doesn’t have anymore of the ‘cold’ symptoms, plus, she just ended the Tamiflu. I feared an ear infection or sinus infection based on how congested she sounds. Finally, last night I hit the wall. Her cough was so terrible that she’s physically exhausted from head to toe. She wants to sleep all the time, lay around and will not walk when we go somewhere. We ate dinner out last night and she wanted to lay in my lap. When we got back to the car I asked AK to take Madelynne home while I take Annabelle to be seen. I just wanted to ensure we weren’t missing something that requires an antiobiotic or prescription. Annabelle was miserable and I just knew the night was be equally difficult as it has been lately.

KidMed was great, Annabelle was exhausted but in good spirits. I prayed she would have an ear infection but she didn’t. The doctor thinks it was the flu but even if she tests positive, there is nothing we would be able to do bc she is well out of the window for Tamiflu to help. While we were there, in the middle of talking with doctors, I could feel her body getting hotter and hotter as she laid in my arms. Literally within a handful of minutes her fever had returned. I wanted so badly to roll my eyes at my crazy kid but I looked at the sweet doctor in confusion as she scratched her head. Pneumonia?

We did a chest Xray and Annabelle smiled perfect for her pictures.

Fortunately, there weren’t any signs of pneumonia. The doctor gave me a walking prescription that if I choose to fill the antibiotic, I could. I just don’t know what to think. Fortunately, there weren’t any obvious signs that needed attention, but were left with an exhausted kiddo with a nasty cough.

We got home last night just in time to tuck Mady into bed and give Annabelle her meds. I spent the next hour racking my brain as to what could be going on…

My biggest fear is that these are signs her body is relaping from the food trails we are on right now. In three weeks today, Annabelle will undergo her 7^th endoscopy and we will biopsy her GI system once again. She’s been eating chicken, wheat and a little rice. If she’s relapsing, that would explain why her little body is in so much distress and why she continues to spike random fevers, why she’s hitting herself and mostly, it would explain the terrible choking cough. Gosh, I pray with everything I have that this isn’t a sign of a relapse. I am praying so hard. Please pray with me.

Let the festivities begin!

We've survived the flu, thank heavens. Annabelle did great with the Tamiflu. Her tummy has been a little yucky but overall, she never caught the flu virus and for that we will take it!

Christmas time is here, and in our family, we love any and every opportunity we can find to enjoy the festivities and make it memorable for the kids. Last year, Annabelle could hardly move and slept 22hr x day, this year, we want to make the most of it.Therefore, it feels like every day there is another event going on whether it be decorating Christmas cookies or driving around to see the Christmas lights. Annabelle is hanging on, but I can tell she is wearing down faster and faster. She has energy for long stretches of time, but she depletes so quickly.



Thursday we took our girls to the Jefferson for Christmas Tea with Santa. When making our reservation, they asked if anyone had food allergies and I said yes. Well, last week the chef called from the Jefferson hotel to discuss food allergies and to figure out how to make the event most memorable and still safe for Annabelle. I was so delighted to see and hear about the foods he specifically prepared for her, safely with all her safe ingredients. Annabelle is sweet as ever, but she's crazy. She thinks she's a teenage mutant ninja turtle, she roars like a dinosaur and in the middle of dinner blessing, there is a good chance she will 'toot' and then start bursting out laughing at herself. Annabelle is anything but ready for a fancy afternoon for tea time at the Jefferson Hotel. BUT(!) her sissy is going, and she wants to do EVERYTHING her sissy does, so off we went. Velvet dress, matching ruffled satin gloves, shiny new dress shoes and light pink lip gloss for both girls. Annabelle was wonderful and keep her hands in her lap, I handed her a gingerbread cookie, she looked at me in disbelief because she's never had a cookie before. I told her she could eat it, she took one bite and I laughed, "Annabelle, you bit his head off!"
Facial expression, priceless. That's Annabelle being fancy for ya!

We were only there for a few hours, but she was melting down fast. I could tell she was getting weak as we stood in line for pictures.. her little legs kept buckling so I picked her up and practically carried her for the rest of the afternoon. In hard moments like these for Annabelle, it's a blessing to be her mommy and able to recognize her needs and read into whats going on faster than ever. I can tell when she is crashing faster than she can sometimes. She is finally getting comfortable telling me when she isn't feeling well and something is wrong, or she needs to be held. For so long she would lie and say "No mommy, I fine."

The next day was Madelynne's Christmas performance at her daycare. She was the star and so excited to make it to the play, afterall, she thought she would miss it from the flu! She had been fever free for 4 days now and if she promised to cover a cough, not touch surface or hold hands, than she could go.

Annabelle was not doing well at all. She didn't want to sit in the chairs. She didn't want to stand, she wanted to be held but wasn't comfortable. Finally, I carried her to the hallways in the daycare and sat her down "What is going on Annabelle? You are NOT behaving very well. What is wrong?!" She broke down in sobbing tears, 'mommy, i go home. please, lets go home mommy'. I felt terrible. I stood in the back and carried her over my chest with her head on my shoulder for the rest of the performance. On the way home, Annabelle seemed to be perking up a little and we needed dinner. As we were headed to the restaurant, Annabelle kept begging for a drink. She kept telling us she was thirsty. I promsied we would have water at the restaurant and we weren't far away. By the time we got there, she was nearly in tears pleading for a drink. When we sat down, she started crying, pulling her clothes off, and hitting her stomach, "I need a drink mommy! I thirsty!! I thirsty!!" Something was clearly bothering her tummy.. I asked if her tubey hurt, if her skin was itchy, if her tummy was upset and nothing. She just kept saying she was thirsty but was absolutely inconsolable. It was wild, and the first time that spell has happened. I don't believe it was as simple as 'being thirsty', just like when Mady told me her eyebrow hurt, that is code for 'headache'. I just can't figure out what Annabelle is trying to say when she is hysterical over being thirsty! It doesn't make much sense. She's done it again a few more times since but nothing as bad as Friday night. She spent the rest of the evening laying in my lap and trying to fall asleep. I spent the meal wishing we just went home instead.

The rest of our weekend wasn't too bad. Annabelle persistently has highs and lows with her energy levels. But as the weather is getting colder, her inability to maintain her body temperature is also becoming more difficult to manage. Sunday night we tried to see christmas lights and got out the car to enjoy them. She was so happy for the first few minutes, but quickly deteriorated in the 35 degree temperatues. All the other kids were running around and Annabelle could hardly stand. I carried her wrapped inside my jacket and her head on my chest as she told me the things she could see. We only lasted about 5-6 minutes and I had to take her back to our van where it was warm while everyone else enjoyed lights. These are the things that are difficult to manage this time of the year. I am so, SO grateful for an attached garage in our new home. Taking Annabelle from inside directly to the car isn't as dangerous anymore.


Yesterday with her nurse, she slept most her entire day away. She ate a small bit for breakfast and wouldn't eat anything else for the rest of the day. She then slept the entire afternoon. Her little body is doing so much it's unbelievable. She's stronger than I've ever seen her and I couldn't be more proud. She doesn't fade away nearly as quickly as she used to, but she's definitely not stable.. I think it's a great compromise of Annabelle and all of us being able to recognize her needs  immediately and addressing them. She's been fighting this life since she were born, but it's taken until now for her to be able to start communicating what she is feeling, trust us when she says something hurts, and most importantly, differentiate pain from no pain. Her doctors all agree, Annabelle likely does not know what pain is - she has likely been in pain her entire life and wouldn't know how to tell us when something hurts. She runs into walls, drops heavy things on her toes and falls down constantly, but she never cries. Pain isn't something she's ever complained about (or maybe she did as an infant, but we were never able to help her pains so eventually.. she just stops crying). As she gets older and more aware, I pray we can start to learn more and more from Annabelle and what she can share.

For now, this incredible little girl is shining her light around all of us. She's filling our home with love, laughter, fun, strength and hope. You are filling our hearts and family with support, endless love, encouragement and more gratitude from us than you can ever, ever imagine. From our family to you, thank you so very much and we hope you have a blessed Christmas.

The moment we fear!

We came face to face with one of our biggest fears last night.

I call this terrifying post: illness in the home. (Cue the background music: dun dun dun)

Madelynne wasn't feeling great Sunday evening after waking from her 4hr nap, she ate dinner and we all sat on the front porch to watch Santa visit our neighborhood on the firetruck. She seemed to be in good spirits, just really sleepy.

Monday morning, I met her in the stairwell shivering, as soon as I touched her skin I knew she had a fever.. I tucked her into my bed with daddy and Meds and went to work.. The day continued much the same, little complaints but persistent fever. When I got home and snuggled my sick little girl in my lap for a movie, my heart began to beat harder. AK gave her next dose of Motrin (she's been alternating every 3hr between Tylenol and Motrin) and an hour later, she was consistently maintaining a 103temp.

I told AK something didn't seem right. But we both couldn't put our finger on what it could be! After all, the only thing Mady said hurt was her eyebrow (that must be 5yo code for headache, which I personally found adorable in a sad way).

The hour passed and both girls were getting ready for bed. I took her temp one more time and it only dropped a degree. Finally, I threw in the towel. I ordered AK to get Mady dressed for me while I got things together.. And off to KidMed we went.  I just needed to know what it was.. if she needs an antiobiotic or something, I would prefer to start it now vs going all night miserable and battling a fever. I also needed to know what it was so I could protect Annabelle if need be.

We arrived at KidMed.

15 minutes later, the flu. Oh my dear heavens, the flu is in my house!! I swear when I say I couldn't breathe and the panic that tore across my face was real, it happened. The sweet doctor assured me that everything was fine and Mady would be better in no time with Tamiflu. My stomach sank as I squeezed my sick little girl in my arms but my heart raced, "oh god, Annabelle cannot get this. I've been told by numerous doctors, protect her from illnesses and the flu. These kids survive a long time, but not without diligent effort of keeping them well and isolated during flu and cold season."
The doctor and I discussed the pros and cons of Tamiflu for a short while and finally we headed home. 

I got Mady in the shower while AK picked up the prescription... $250 for ONE prescription of Tamiflu. One. A week before Christmas and we can't even negotiate with the cost of getting this virus out of our house for the safety of our kids... But a price tag of $1,000 for the family?! We just can't afford it. We only purchased Mady's :(

My mind raced and I went into full panic mode. The only person that would understand and be able to talk me thru this sudden news was our doctor, I texted her and she called right away.. At 10pm. We discussed multiple situations and ultimately Tamiflu. The ingredients are dangerous to Annabelle's system. We have no idea how she will filter and process the drugs. We're also terrified of the side effects of Tamiflu. But the virus itself is life threatening. Talk about weighing evil to evil!

We decided to begin Annabelle on the meds, and not just proactively; we are treating her as if she already has the flu. Her body does not and will not show symptoms like anyone else with the flu. For all we know, she could be the one that started it and that could be why she isn't eating and cranky. No idea. AK picked up her prescription this morning and hopefully it begins to do it's job.

In the meantime our entire house is on quarantine. We are flooding every surface area with lysol and disinfectant cleaner. My home has never been so clean :) The girls are separated from one another and we're praying... praying hard. I have to work so AK is staying home with the girls. We are doing everything to protect ourselves from getting sick. We are doing everything we know to keep Annabelle in a bubble and watching her like a hawk. And we're praying Madelynne's fever breaks asap! Poor poor babies. This is the moment we've feared, God please watch over our house and rid these yucky germs from my family soon!!! After all, It's Christmas Time and we have big plans for this week!!!!

She's famous!

The holidays are nearing and there is Christmas cheer all in the air. I look forward to this Christmas for Annabelle, as last Christmas was like no other that I never want to relive. We couldn’t leave the house. Annabelle was holding on to dear life with everything she had and she was so exhausted. We couldn’t even see Santa bc the dangers of germs and energy it took was just too much for Belle’s weak body. Angels around us arranged for a special evening, Santa came to our house instead! He sat with the girls and talked with them. Annabelle was in shivering pain and scared of St. Nick but she watched him from her comfy chair and pillow. I’ll never forget that evening when Mr. and Mrs. Claus brought Christmas to our home. I’ll never forget how magical it was for Madelynne to be able to see Santa and I’ll also never forget how painful it was as parents to be in the shoes we were wearing in that moment.

We’ve come a long way since last Christmas. The holidays are much brighter this year. Although we do not have a diagnosis, we have only a few more answers for sweet Annabelle, overall, we are maintaining her health and quality of life far better than I could ever imagine. She is smiling and laughing and playing this Christmas. She tires easily, she sleeps a lot and then runs spells of not getting any sleep or rest at all, she has a huge (at least for us its huge) variety of foods, and then sometimes she cannot eat anything at all. But overall our spirits and her days are brighter. We have so much more hope for the future than we did a year ago. Our energy is towards hope and looking ahead, and not as much praying just to make it thru tomorrow. It’s a good feeling. Equally exhausting, but we sleep better and smile more. For that I am grateful.

Annabelle is very excited for Christmas. I wish she would stop telling Santa a different toy each time she’s asked what she would like. First it was a train, then it was a puppy, this morning she wanted a Frozen watch. Gracious kiddo!

BIG ANNOUNCEMENT

When Annabelle first got her tubey, it was painful hard for me to explain to others. I struggled explaining what exactly the tubey was doing for Annabelle, to her very curious and terrified sissy. Madelynne didn’t know why we continuously had to hurt her sister to put a straw in her nose and make her cry. She couldn’t understand how that was helping the boo-boo’s in her tummy. For other curious children on the playground, they too questioned and wanted to know why she had a tubey taped across her face. Then came the time to do the big surgery for a g-tube. Our conversations changed, our fears and things we had to be careful around shifted. Instead of being careful not to pull the tubey out of her nose, now we have to be very cautious around her stomach. The conversation was so hard. Even when trying to explain to adults just what the purpose of a tube was for, when after all, “she eats, I’ve seen her drink formula. Why do you need a tube to do it for her?” Then a nurse provided me with this amazing book, it was called “There’s more than one way to eat”. I read it to Madelynne, along with Annabelle that didn’t quite understand at the time. It answered so many questions and really brought to perspective what we were doing by tube feeding. It helped family and friends gain a perspective and respect to our world.

When Madelynne started Kindergarten this year, Annabelle asked why she can’t ride the bus. Mady and Belle both came to the conclusion that it was because Annabelle has a tubey. They both think she cannot eat food, because she has a tubey. They think she can’t play in bounce houses because she has a tubey. I had no idea that this tube would become the blame for everything Annabelle is limited from in life. It’s not the feeding tubes fault she cannot do things, it’s her disease and also her undiagnosed disease, not the tube! I found another book by this author, “My tubey goes to school”. It’s amazing. I bought it not for Annabelle going to school, but for both girls when Madelynne went to school. They now understand that tubey’s DO go to school and a feeding tube has (mostly) no limitations to life, it’s just a different way some kids eat.

The conversation and struggles do continue. Annabelle is finally becoming more aware that she’s different and it’s heartbreaking. She asks where other people tubeys are and if they’re sick. If I tell them that someone is sick with a cold, her head drops and she asks if they’re in the hospital (bc that’s our life). A few months ago, I signed Annabelle up for dance class, she couldn’t believe it! She couldn’t believe she could do activities like other kids even though she has a tubey! I strive to make her feel included and associate everyday life apart from her feeding tube. Though for Annabelle, her tubey is very much part of her everyday life and she does feel very different. I expected this to come much later, not at 3 years old.

So several months ago, I noticed the author of the Tubey Books posted her newest book idea. I couldn’t believe it! The pure genius of this wonderful lady, and fellow tubey-mama. She requested pictures of real kids with feeding tubes to create an entire book of “Real Kids, Real Tubes”. It contains pages after pages of children just like Annabelle who are living everyday life with tubeys. Kids swimming, going to school, having surgeries, eating different ways, different types of tubes, etc. There is nothing more exciting than finding an  opportunity to make your child feel included in this big, big world. That's exactly what this book is aiming to do, and it's delivered :)

The book came out last week and I cannot begin explain the excitement I felt and the butterflies when I saw my daughters beautiful little face on the FRONT COVER of the book! There were thousands of entries of photo submissions, and hundreds upon hundreds that weren't choosen to be used, but Annabelle's pictures made the cut. MULTIPLE pictures even! It's precious. The entire book is so heartwarming and meaningful to Annabelle and our family. It's the absolute perfect tool we needed to continue building her confidence as she pushes forward in a world where she feels 'different'. I loved it, please check it out on amazon :)

http://www.amazon.com/Real-Kids-Tubes-Tubey-Photograph/dp/1492212288/ref=sr_1_1?ie=UTF8&qid=1418667074&sr=8-1&keywords=my+tubey&pebp=1418667118064

It's a gloomy day.. week... year. Nothing feels right :(

My sweet girl is constantly on a roller coaster from hell. We did some grocery shopping and strategically found such an impressive variety of new foods that are still safe for her. Annabelle was so happy for the blessing to be able to expand her diet.... And now, she won't eat, not even the beloved chicken nugget. She has no appetite, or she's scared of food, I'm not sure which. Multiple times I offer her something and she responds, "no mommy, I can't have that.." She's lived her entire life unable to eat like others. She now has her own shelf of food in our pantry, for the first time ever, and she doesn't trust us. Food has the potential for Annabelle to relapse, a relapse is painful and all its associated side effects are understandably not something Annabelle sees worth it to eat food. I can't tell if she's scared of food, has no appetite or if she is in pain. I pray with everything that she's not in pain.

She won't sleep in her bed any longer. She is never comfortable. I stayed awake with her until nearly midnight last weekend with her silently laying over my lap. She tossed and turned, head in my lap, feet over my shoulders, head on the armrest of the couch and me rubbing her back, her cradled into my arms, me laying beside her, and nothing. She is never comfortable. When she falls asleep, it's more of passing out and praying she can stay asleep than actually getting any rest.

Her cough has returned, with a vengeance. She's utterly miserable again with this barking. This marks 4 months straight with a persistent cough.
Her BMs are horrible. They're so much time between them, they're so large and painful despite all the meds she is on. I really wish I had an explanation for this issue.. 3yo's do not just have constipation issues that require daily doses of Mineral Oil, Miralax and enemas. Im not buying it.

Good News to report (if you even want to consider it good)

We have our next surgery on the books. January 13th, Annabelle will go for her 7th endoscopy in less than two years. Personally, I would really prefer to not scope and subject her to another round of anesthesia when I know she will be put under when we get to our next hospital. I'm working my butt off to get us on the books there, but it's such a long process. I hate hate hate my kid being put under anesthesia so much, it terrifies me. If I can schedule with the next hospital soon to scope her for this trial instead of here in Richmond, that is our desire. Wish me luck to see if I can make that happen!

Say a prayer for my Annabelle that she feels better soon, cough subsides and her appetite returns - hug your babies with everything you have and never forget to tell them how much you love them and never blink without recognizing how grateful we all are even if things feel so broken. 

Dreams do come true!

Today we met with our GI and Dietitian. We entered this appointment with a different mindset than from when I first asked to be scheduled. At that time, Annabelle was still fighting the persistent cough that wasn't getting better, her appetite was depleting and we had recently gotten back from traveling where another doctor scared the begezus out of us that Annabelle was terribly malnourished. Today, we walked they the doors needing much less from this team except just guidance for the path we've chosen to walk on.

You see, as a parent of a child with an undiagnosed and mystery illness, the part I find myself playing most heavily is the loudest, decision making advocate for my child and sometimes that involves going against doctors orders and leading with only my gut. It sucks, no it doesn't take nerve or guts to defy a doctor, it's scary as hell. What if my gut is wrong? I'll be held responsible for my negligence in her care. If something happens, there is a good chance I will loose my medical support system! It's hard. 

Today was the day I had to have that conversation with Annabelle's two doctors. I had to tell them that I left the state to seek a second opinion because I wasn't comfortable with the care I was receiving from them. I had to tell them that the other doctor including my local doctor here, all agreed the treatment plan we were on (that they decided) was dangerous and needed to be changed. I also had to tell two, highly respected, extremely knowledgeable doctors that I have completely changed Annabelle's medications with the support of our Ped and also added multiple foods that we not permitted within our care plan. 

The conversation was difficult, undoubtedly, my voice was shaky but my head remained high as I validated my reasoning for all those decisions during the past three weeks. Thankfully, once again, my gut was right. The changes we've made were a lot less reckless than I feared and Annabelle is in fact so much better on our current treatment plan than she was before. 

The only concern they both shared was my introduction of wheat into Belles diet. This, in retrospect was probably not very smart. But I really wanted her to have bread! We discussed around our plans for quite a while and all agreed that we will keep the wheat, but we must biopsy within 6wks. 

Annabelle's weight looks great. She's growing very well (she's actually lost a little over a pound, but I expect that from coming off the prednisone). We have quite the strategic plan and instructions for her daily caloric intake. I really wish I were a dietitian for this part... Bc I understand absolutely nothing about calories and balancing meals! 

We must continue our tube feedings of Elecare Jr. made to 30cal/oz and delivered at a feeding rate of 120ml/hr so that it is delivered over the course of 1hr. Feedings will continue to follow our schedule at 9A, 12N, 3P, 6P.  Night feeding will run from 10P - 6A at a rate of 30ml/hr,

Additionally, she needs 150 calories per meal x3 and another 150 calories as total snacks each day. Specifically, 8 servings of grains x day (2 x meal, plus 1 for each snack). 3 servings of vegatables x day. 2 servings of fruits x day. 3 teaspoons of fat x day.

Can I stress once again, I really wish I knew more about nutrition. I find Chipotle and a Coke, a nutritionally complete meal and somehow survive..... Before the end of all this learning and adapting, we are going to be one of the best fed families in the county!


:drumroll:

The best news ever though... Are you ready for it? We were able to score a new food today! And not just any food, CHICKEN!!! Yes, that's right. For the child that wishes for nothing more in this entire world, she finally gets a chicken nugget. I am fairly certain by the tears that fell from my face this evening, I may have more excited than she was for this rare new treat.

After I left the doctors office, I spent the drive into work, on the phone with multiple people from another hospital that are eager to have Annabelle in their clinic to study all her adorable, difficult little cells ;)


When we got home, I made Madelynne dinner at her specific request (bc she's scored perfectly every day at school this week and I just couldn't be more proud of her), and I also quickly whipped together a new meal for Annabelle too. ;) Watch and enjoy!

Annabelle loved her chicken nuggets. Shortly after she was finished, she came to me and said, "Mommy, something is wrong. My tummy is saying 'grabble scrumble' ...... it's talking so loud because of the chicken nuggets!"  I asked her, 'well, what should we do about that?'. Annabelle quickly piped up, "We need to make some more chicken nuggets, that's what we need to do!" :)

I did make her some more, but before they were finished, she was complaining more and more about her tummy making noises and then she appeared to be in pain. We quickly concluded that this grabble grumble sound wasn't a good thing, and so we've been spending the rest of our night in the bathroom and changing lots and lots of clothes. It's a new food and will take some time. Annabelle's little body has never, ever had any meat before. Not even when she was a baby, she's never had a meat. This will take some adjustment. The evening isn't going well but the small amount of time we spent enjoying chicken nuggets was worth it in her eyes I am sure. She will be just fine :) I just hope this upset tummy ends soon for her.

"So she just has a cough, right?" -NO.

This cough is getting worse.

Annabelle's appetite is depleting, she is hardly getting any rest during the night, she cannot nap during the day and she's utterly exhausted and in pain from the chronic cough. I spoke with our doctor Friday and pleaded for help. She did a lot of studying and reading on the treatment of EoE and agreed with the doctors in Boston that perhaps, our treatment plan as decided from our doctors now, is not the best treatment for Annabelle and her current state.

We decided to immediately switch her from swallowed steroids to an inhaled steroid and also add inhaled albuterol. In addition to those, we reviewed her current PPI and added Singulair Granules to her daily drug cocktail. Saturday progressed similar to the days prior. Persistent cough that became increasingly worse as the evening went on.


Finally, late Saturday night, Annabelle entered another coughing fit that led to painful retching. I couldn't run to her bedroom fast enough before I found her sprawled on her hands and knees in her bed gasping for air and retching. Madelynne followed me asking if her sissy was ok. I ordered Madelynne to run to the Tubey Closet and get a really big syringe that we use to make bubbles (60cc). She hurried off as I held Annabelle in the best position I could considering her state, and continued to calm her down between her gasps for a breath and coughing / choking. Mady came back to belles room with tear-filled eyes and a 5ml syringe. That wasn't nearly large enough - I told her I would go get one. She was shaking like a leaf and I explained, "Everything is going to be ok Mady, sissy is just having a hard time catching her breath". By the time I stepped back into Belle's bedroom, Annabelle let out a huge scream and began shaking all over her body, she then started vomiting (VOMITING) everything off her stomach and into her bed. Vomit, her last feed, stomach bile, small bits of food, and numerous streaks and traces of blood. I was absolutely terrified. Mady started yelling and pleading for an explanation for why Annabelle was throwing up. Annabelle CANNOT vomit due to her Nissen. She hasn't been able to vomit in almost a year because of her Nissen (where her stomach and esophagus are sewn together). She hasn't even managed a burp in almost a year, let alone a drop of vomit. I knew something wasn't ok. I knew she tore or opened her Nissen, but I didn't know exactly what to do. Annabelle was exhausted. Her stomach was finally relieved from all the pressure that wanted to escape and the coughing spell was finally over. She was in terrible pain, but so so tired. I cleaned her up after about 5min of laying in vomit so she could catch her breath and I wipe her tears. Mady asked me repeatedly "If we need help mommy. You should call 911. I can dial the numbers, but can you talk to them because I don't know what to say?" Bless her heart. She was scared to death. Annabelle was scared too, but more in shock than anything. I was terrified and clueless as to what we should do in the middle of the night, alone with two girls. (Daddy wasn't home that night).

Sunday progressed normal but again, as the day went on, Annabelle began to get worse again. With each cough she would wince. Her appetite was nearly gone, I just know it hurt her to eat. Her feeds were delivered extremely slow by a trickle rate, if that. No bolus or fast feeds. I spoke to our doctor multiple times again and told her that my gut just isn't allowing this to sit well. Something is telling me that she needs to be seen but I don't know what to do. More than anything, I was scared to death to enter another night when I know the nights are the worst for Annabelle. Laying down is excruciating, and I know it will be even worse now with an opened Nissen. Finally, shortly after dinner, Annabelle's cough and choking began again. Daddy was home by that time and was worried, he finally turned to me and said "we have to do something - this isn't ok". I knew what I needed to do. But everything inside me wants to protect Annabelle from what I know will happen the moment we walk into a hospital.

I told AK that I would let the doctor know that it's time we go in so she can give the hospital a heads up. And then I went upstairs to take a shower. (The things you learn to prioritize when you live in a hospital.. take a shower and pack extra clothes / yoga pants and caffeine, because you have NO IDEA the next time you'll actually be able to shower.. oh, and pee. I've learned my 18hr lesson from that one too.. when I enter a hospital with my baby, I will never, ever ever ever leave her for a SECOND no matter the need. Unless she's being taken from me for a surgery or procedure, I would never ever leave her to shower or pee. Never.)

Once I was showered and changed, I packed Annabelle's favorite things and blanket (gigi) and picked out the most comfy jammies I could find so she would stay warm. When I made it downstairs, she asked where I was going and AK told me to Shhh... I can't do that. I got down on my knees and told her, "Annabelle hunny, we are going to the hospital so the doctors can help your yucky cough. ok?" Oh, the heartbreak that tore across her face was enough to wound even the strongest of hearts. She begged and pleaded to not go. She ran to the kitchen towards the neubulizer that she FIGHTS and promised to take her medicine. "I do tweatment mommy, i pwomise, I do tweatment and make cough go away, i pwomise!!!" My heart broke and AK saw it in my eyes, he scooped Annabelle up and told her everything would be ok. Mady ran to her sissy and gave her a big hug and kiss goodbye and so did daddy before Annabelle and I headed out the door. The rainy drive to the hospital was full of 2046107636 questions from my backseat. Finally, the doctor called and we discussed mutual concerns and she confirmed she had called the hospital, that they were expecting us.


The hospital on the other hand was terribly uneventful. I explained on as high of a level as the doctor needed to hear about Belle as he stopped me multiple times , "So are you here for her cough?" No. We are here 1) We believe her nissen is torn. 2) she has an auto immune disease that doesn't allow her body to present symptoms as they should when she's sick. 3) Her appetite is depreciating so quickly that her diet is becoming dangerously unsafe based on her history. 4) Her persistent cough is progressing worse as the days go by. 5) I NEED HELP! I can't continue to do this alone at home with this child and watch her crumble and drown, something has to give, we need help.
Doctor: "So I hear and can see, she has a cough?"

:eyeroll:  Can you at least make sure the nissen isn't causing damage that needs to be addressed immediately? I gave the ER doctor my pediatricians personal cell number and asked him to call her, as she was waiting by the phone to answer any/all questions that may arise while we were in the hospital. Maybe she could explain our concerns better than me. And better yet, maybe they'll be received more respectfully than just a mother with a child 'that coughs'.

Finally, he ordered a chest x-ray. Annabelle did WONDERFUL! She's getting quite used to xrays. She kept her hands on her hips and held perfectly still. And then she faced sideways while I held her 'skirt' and she kept her hands on her head with a "Big smile for the picture" :) No tears or hesitation. She did wonderful.

The chest xray didn't show pneumonia (thank god) nor did it show significant pockets of air around her diaphragm where her nissen had torn. We consulted with the surgeon about the nissen needing to be repaired immediately and all agreed that wasn't necessary as long as she didn't have heavy internal bleeding or air pockets from the rupture. (Again, thank god).

Our pediatrician demanded an answer from labwork. The ER Doctor replied to her and explained to me, "Even if we do labs, it's still not going to change my course of action. Annabelle looks great, she just has a cough and I'm sure it's just a cold mom. Again, she looks great and healthy to me." My eyes could burst from my head. I thanked them for their time and scooped my baby up. Between every word the doctor spoke, he would have to pause and looked at Annabelle as she coughed her little head off and tried vomiting while wincing from pain. How someone can look at a child in that condition and tell me she looks great, is beyond me.

In the hospital's defense. They cannot do any medical procedures or tests on pediatrics as they do not have a peds unit. If they were to need to do anything beyond 'stabilizing her', they would Med-Transport her to another hospital where they could better conduct those tests. Im guessing that's why they were so reluctant to help in any sort of way.

When I spoke with our doctor after leaving, she couldn't believe that someone had the nerve to say 'she looks great'. We understand Annabelle is quite a mystery and doctors just simply don't know where to start when it comes to helping her, but for the love of Pete. Annabelle still deserves some mercy and help when she's struggling right in front of you. And yes, she has weight on her - purely bc she's terribly malnourished and has been on prednisone twice daily for 6 months. Ya darn right she's going to be chunky!" that doesn't mean she 'looks great' though. 

The next morning we took Annabelle to see our doctor and perform labwork. What do you know, with zero fevers and absolutely no pain or complaining, Annabelle has fluid in her ear and an ear infection. Which I am certain contributed to the upper respiratory infection that she's fighting and the ER never caught. Thank God for pediatricians that know, love and advocate for this child better than over-paid doctors do.

After multiple conversations with doctors, completion of 6 trips to CVS in less than a week, another appointment from the Home Health Staffing company and lots and lots and lots of kisses, bedtime stories and episodes of "Peppa Pig", Annabelle is feeling ok. She is quite groggy, irritable and the cough isn't getting better yet but hopefully it will soon now that she's on antiobiotics. I am waiting to hear from our surgeon as to how they want to proceed when it comes to the Nissen repair. A nissen is a major surgery and a terribly painful, several-day impatient stay for Annabelle. I am not looking forward to it, but I would prefer something to be addressed sooner vs later, as Annabelle is drowning each and every time she lays down or eats/drinks to quickly. Something needs to give soon, very very soon.