Tuesday, May 27, 2014

We're onto something, finally.


We learned so much about Annabelle Tuesday. My expectations were low, my wishes were set high but the information we received was invaluable. Our visit this week brought a huge new perspective about our daughter and is allowing us to now look at her life thru a completely new set of eyes.

Without sharing too many details, because so many tests, presumptions, and medical conversations are still taking place - I did want to share our initial impressions and where we are moving. 



Before Annabelle was born, my body went thru hell - we didn't expect to conceive or fully carry Annabelle and we really didn't have much explanation to what was happening with me. Mady was born healthy, full term and without any issues. Annabelle came after my body ran a marathon that depleted me of the best nutrients and support to carry a healthy child. 

I struggled to keep the pregnancy, and I mean I STRUGGLED! There were multiple Hospitalizations, several drugs including reglan, zofran, phenergan, multiple series of rhogam because I kept bleeding without explanation and finally towards the end, even more rounds of medications to stop labor on different occassions until we couldn't any longer. I received steroids and they pushed Magnesium as hard as they could for 11hr until Annabelle was finally born by emergency csection at only 33 weeks. I was sick the entire pregnancy, not typical morning sickness, I was diagnosed with Hyperemesis Gravidarum. I lost weight so rapidly that my own health deteriorated. It wasn't until the final cocktail of drugs that I was able to slow down on dropping weight and I finally gained a total of 6lb... And then have birth to a 5lb baby. 

Annabelle struggled just as much during the pregnancy. She tested positive during early genetic testing for spina bifida.. A 20wk Amniocentesis discredited the spina bifida threat but continued to come back high for genetic disorders but non specific to which. 
She failed all her stress tests. We visited the perinatologist multiple times a week until labor and delivery for the safety of Annabelle was just inevitable. 

During the gestational time Annabelle was born, was part of the most critical period for her gastrointestinal system. She needed to cook in utero longer, she needed the extra time to build a solid strong GI System, but instead, we subjected her to floods upon floods of drugs and then into the big cold world. From that moment, she was on her own to finish developing and thrive. 

Quickly once she was born, Annabelle was placed on Elecare. This formula in particular requires basically zero effort of the GI system to get the nutrients. All her body needs to do with elecare is absorb it. Our bodies are so much more responsible for finding the nutrients and things we need to survive. We break down red meats to get iron, we break down dairy to get vitamins etc. Annabelle's body was never taught to break down anything... All we taught her to do was absorb and not work, any liquid we out into her tummy. 

Now imagine a life and you've never eaten red meat. What happens the moment you eat your first steak? Your body freaks out and you're terribly I'll. you and I know there are plenty nutrients to gain and iron to absorb from red meat, but your body doesn't see it that way - your body rejects it and wants it OUT! It hasn't been trained on what the benefit of this new food is and what to get from it.

Moving forward. Annabelle didn't work an ounce for the first 18m of her life... In fact, she's only spent about 5 months in her 2 1/2yr NOT on elecare. We've never trained her body how to work and get the things she needs to survive. 
So keep that thought in mind....


We know, and confirmed without a doubt again, she has an auto-immune disorder. What we still do not know however - is just what exactly continues to set her into a full auto-immune relapse and make her body fight and attack itself. We used to think it was food.. Now we believe it to be airborne based on where the highest qty of Eosinophils were last found. But we still have no clue what exactly is doing all this. And until we know, we cannot protect her. And if we can't control the disease and protect Annabelle from it's threats - well..... We count Annabelle's best days and just be grateful for those. We all know this isn't an option and this is the point in every conversation where mama bear puts back on her boxing gloves and starts fighting ferociously again. I wear hives all over my body just thinking about the fight ahead... like right now, here they come again:

A couple considerations that are on the table:

  • Annabelle is allergic to a billion things, her body's allergic reaction is to set off the auto-immune response.
  • Annabelle's GI system doesn't know what to do with any foods or substances not does she know how to gain any nutrients from them, and in result - goes into auto-immune. 
    • This could explain why each time we have attempted to lower the quantity / density of her calorie packed formula, she rapidly looses weight. 
  • Annabelle has a rare form of Genetic Celiac Disease. Elecare could potentially have traces of ingredients that is setting off a response from Celiac.
    • Which is odd considering Celiac Disease is what our first GI nearly bet money Annabelle had when she was 18m old. Our first scope was essentially to CONFIRM the Celiac diagnosis and begin treatment. When our doctor came from the OR, he appeared shocked and shook his head saying "it's not celiac, I'm sorry, it's going to be eoe". I will remember those words coming from that doctor for as long as I live.
    • There are many deformations that the doctor recognized on Annabelle that clued her towards Celiac. What I didn't know however, is just how painfully difficult it is to get a Celiac diagnosis. 

Annabelle's tests came back alarming abnormal. In many dangerous category's.. primarily though in the liver, kidney, thyroid, endocrine and of course GI/nutritional areas (vitamins etc).

There are a few immediate changes we are doing now for Annabelle until more tests come back. I have been in close touch with all the doctors and have been absolutely floored and blessed to see how much they are all in constant contact with one another about my little girl. She's quite the hot topic of conversation around several offices and hospital and I am so grateful she's getting the attention and brain-power of professionals that she deserves. 



 
On a personal note: 



Our Memorial Day weekend was spent surrounded with family and friends and we thoroughly enjoyed all the quite time. I hope you were able to do the same. I am finding more and more opportunities to just sick back and soak in all the amazing things my children are doing, saying, playing and learning. I cannot say loud enough just how awesome these girls are!!  Mady graduated preschool Friday, as soon as her name was called on stage, Annabelle yelled "my sister! My sister!!!" And she ran down the center for the church sanctuary with her feeding backpack on to give her sissy a hug. We spent time playing in the pool, which has become Annabelle's new favorite past time. A wish she pleads for all the time... One I can't always accommodate and therefor would be lying if I said I didn't let the girls just pretend to swim and wear their bathing suits in the tub, more often than I care to admit ;)

Belle is talking up a storm. Her imagination is far bigger and more amazing than I ever believed possible for a child! I sometimes wonder if she's too pumped on drugs and is delusional lol. She loves to play pretend and does so all the time. I need to record her soon so you can hear her sweet voice and watch this amazing girl learn and live every bit of life to it's fullest. 


Tuesday, May 20, 2014

Eosinophil Awareness Week

It's National Eosinophil Awareness Week. A painful, rare, life-altering disorder that my family and anyone reading Annabelle's story, is all too familiar with.

Many parents, fighters and supporters around the country are celebrating and using this week to actively education and spread awareness for an epidemic that has plaqued our children and loved ones. I am doing my part in a much quieter way this week, we're wearing our shirts and bracelets, but life is just moving a bit too fast in our family to devote the attention this disorder deserves this week. I wish we could be doing more, but I would like to think that Annabelle's Blog and stories are touching hundreds daily on how serious Eosinophil Associated Disorders are to those affected and their families. I would like to believe that instead of focusing only a week during the year, that our family is spreading awareness all the time to you.

If you do want to learn more or how to donate and support all the children and families that are fighting this battle, please visit the sites below.

http://apfed.org/drupal/drupal/Get_Involved
http://curedfoundation.org/site/
Many videos, http://www.youtube.com/results?search_query=eosinophil+awareness


Our babies need a cure.
  • We need funding for research.
  • We need help.
  • We need a bigger support and resource team to help navigate life with this labeled burden (heavy word? ... I tried to think of another, but burden was appropriate. especially with how I am feeling about it today.)
  • We need a better way to diagnosis and manage EoE Relapses.
  • We need educated healhcare providers that truly understand Eosinophil Associated Disorders
  • We need education systems that are equip to provide a fair and valuable education to our sick children.
  • We really need unlimited supply of wine for all the momma's and daddy's that spend every waking minute with heavy hearts while raising our children who suffer this unfair disorder. (I don't know this wish will make it to the top of priorities for donations and funding but it's worth a shot). 


Our Governor, Terry McAuliffe had this statement released Sunday.
https://governor.virginia.gov/constituent-services/proclamations/proclamation/eosinophil-awareness-week/


Today on our schedule, living life with Eosinophilic Esophaghitis, we are visiting with a highly respected, very difficult to schedule with, Dr. House in the Mystery Medical World.

Annabelle has been thru the ringer of tests, labs, surgeries, procedures, more tests and more labs - most of which always indicate an abnormality of some sort. None of which have given our doctors the information they need to make an official diagnosis for our baby. We are moving out of the box today and seeing a doctor that practices Natural Medicine. She promises to look at our little girl from a global level. View Annabelle's system as a whole and try to help us understand and decipher how and why her body is operating, fighting and failing in the way it is. We are eagerly anticipating several hours this afternoon to nagivigate piles, and I truly means MOUNTAINS of paperwork and medical records to find some sort of trend to explain Annabelle a little better. I am praying with everything that today will at least, if nothing else, give us a better path to walk down towards finding a diagnosis for Annabelle. I hope today provides us with a direction - with a direction, I can find the best doctors in the world. I just need to know where we are going and I will run. As fast as you can imagine with my baby cub under my arm. I will run.

Stay Tuned.

Tuesday, May 13, 2014

Mother's Day



Treatment is going well.. Annabelle is taking the Pulmicort Slurry better than she did last year and isn't having nearly as rough side-affects as she once did. Prednisone usually makes her very antsy and uncomfortable, unable to sleep but exhausted - I call it Baby-Roid-Rage. She's doing alright for now though.. I can't wait to see when the double and triple chins start to appear, so cute (sarcasm).

The best part of the last several days since getting our test results, is that she has been an absolute champ about wearing her face mask! I am unbelievably shocked at how well she's taking it. She knows that she cannot go outside without it on and wears it without a fight about 99% of the time. As hot as it's been outside lately, I know wearing a mask over your face must be miserable. Her little cheeks get so bright red and she's sweaty but she does it without a fight. She occassionally asks to take it off, or for mommy / daddy / sister to wear it instead.... I just pull another out of our bag and before you know it, our entire family is wearing a face mask while riding bikes and playing. She giggles and knows we are doing it for her. She points to laugh "Mommy wear mask - sister wears mask - Annabelle wear mask, too!"



I can't be more thankful for the way she is handling things this time. I don't know whether to be grateful for the age of finally being able to understand what I am explaining to her, or the experiences in her short time that have made medical necessities part of our families norm so she doesn't fight any longer. Either way, life has gotten a fraction easier with each curve ball. We are learning the avenues of dealing with each upset and how to manage the next bump in the road. Not a proud achievement, but it's one we celebrate.

Madelynne is understanding with much more clarity that her sissy is sick and she's fully understanding why. She doesn't ask daily if she's going to die anymore, she just focuses on making sure we all have a great day and are happy before we go to bed. Sunday night as her and I cuddled in bed together she looked up at me, "ya know mommy, I think Annabelle had a lot of fun today. That's good right? She laughed a lot and liked playing with me.." I hate that my 5yo carries these worries and weight, but she does so with such a passion and genuine love and care that I cannot take that away from her. I see so much of myself in her soft words and I am so very proud of that. There are many many things that I hope my children don't get from me, but this part that Madelynne has embraced of her mommy - that's one of the most important qualities that I pray both my children carry. 

Annabelle is learning and beginning to ask questions about her boo-boo's. Twice now she asked where Annabelle's boo-boo's are, I pointed and told her "Inside your tummy, here. Inside your chest, here and inside your mouth, right here - ahhhhh" She confirmed all the places and agreed, then looked back at me "Why mommy?"

I wasn't ready for that question. But we don't lie to our children. I will never lie to them... My parents never lied to me about sick kids, but to be honest, until my daughter was sick - I never really knew or realized that CHILDREN DIE. All the time they do. Babies die. Children die. Cancer is a nasty, horrible visicious nightmare that isn't only for adults. Accidents happen. Unexplained medical disorders are everywhere. Children left and right have feeding tubes, traches, floods of medications and silent/invisible illnesses that they fight and we know nothing about. I don't want my children to be burdened with this reality about life, but I do want to raise them realistically that these things happen. In our world, in our life forever moving forward, Annabelle will be one of those kids, Madelynne will always be the older sister to a kid with a feeding tube and surgeries. I want my children to look at one another as sisters and people, and also look past all the others with disabillities and also know they are people too - kids, children, sisters, daughters, brothers, etc that just because they may look unique, travel in a wheelchair or wear a face mask, that it doesn't mean they aren't someone with an absolute amazing personality. I want to raise those children, I will, and we are.



Mother's Day turned out well. We had beautiful weather and a family cookout surrounded by all the hardworking, loving and compassionate mothers that we're blessed to have in our families. I looked around a hundred times and watched my girls playing with all their cousins and literally felt my stomach drop repeatedly. I was an emotional wreck on Mother's Day. This was a year from the holiday last year that Annabelle was diagnosed and this year she is running around, appearing much happier and healthier than last, but she's wearing a mask. She's also sporting a tube and can't eat the things on her cousins plates sitting next to her. But you know what? Annabelle's cousin couldn't eat some of the things on Annabelle's plate, just as Belle has certain rules we follow for her disability - her cousins have others too. Most importantly, every part of our family smiled the same smile as I was, we all enjoyed a holiday watching the children PLAY. We have all evolved over this past year. No one payed an ounce of attention to Annabelle's new sporting mask, no one cared that I had to pause playtime to vent / feed Annabelle. Her cousin, that is only days older than Annabelle always peaks curiousity when we're working with her tube.. I love it, she's 2 1/2 and is simply full of innocent curiousity. She's seen her tubey a lot by now and it's becoming nothing new to all the kids in the family. In fact, she was proud to help flush Annabelle's tubing, a high-five and off they were to play again!

As a mother, the hardest thing I have had to do on this entire journey is mourn and bury all my dreams of who I thought Annabelle was going to be. Those are little words but the meaning of them has truly consumed me for years.. it's a battle I may always fight, but one that I am newly working to find peace with. I lost my Annabelle Grace, the one I dreamed of before she was even born.

I knew she would be a handful, and I was right. I prayed she would have curly hair - or at least SOMETHING fun about her hair, since Mady's is so fine. And I got a little girl with a mop on her head full of it's own daily opinion. I hoped she would be as smart as her sissy and have a heart full of sincerity. I dreamed she would be her own kind of beautiful and I was right. All those visions were everything I have in Annabelle. The moment I got pregnant though, after numerous miscarriages, I prayed with every single thing I had that she would be healthy. That I would carry her and cook that child the best I could. I just knew that God wouldn't give me a child that .................. was like Annabelle :'(

When she was born I mourned the failure of my pregnancy. When I laid on the OR table, I mourned the loss of my hard work, planned and prepared for natural birth. As she slept in the NICU, I mourned the distance of not having my newborn in my room / breastfeeding / going home from the hospital together. When the specialist visits started at 2 months old, I mourned the goodbye of normal doctors visits. When her cousin began accomplishing developmental milestones, I mourned every bit of delayed that my daughter clearly demonstrated... and then I hit denial. I put my head in the sand for over a year and pushed her. I pushed our family, I pushed myself as her mother, I pushed her daddy and my other daughter... We pushed together for everything I thought our family was supossed to become until I hit a brick wall. The lies fell all around me and I found myself in yet another specialists office and couldn't answer his questions. I broke down - terribly, and ugly, I broke down "Something is wrong... I know there is and I am so so sorry..... something isn't ok with my baby and I am scared to death".

Since Annabelle was born I have mourned. For the last year I haven't had a moment to thank about all our losses with the child I once believed I would have, I have purely focused on moving forward one day, step, milestone, curve ball, bump in the road, surgery, procedure, pharmacy visit, over-due medical bills, sleepless nights, nurse interviews, record keeping and still finding an ounce of normalcy and the groove for our 'newly embraced' family. We've pushed forward, full steem ahead - and most times with very little support and understanding from all the ones around us. It's hard to see, believe and understand a silent disease. It's hard for anyone that doesn't live, breath and walk in our families steps to accept that beneath Annabelle's sweet smile is a very sick little girl. But this Mother's Day was exactly what I needed. I needed the surrounding love from all our family to watch all the kids just play, live, laugh, giggle, run and PLAY. I needed a reason to stand back and smile and just soak in where we've come in this life. This may have been my best Mother's Day for the most sad reasons. This year I felt the most fufilling and confident as a mother as I ever have. I know my place and my destiny in this life as both of these girls mother. Sunday I stopped asking "Why has this child been given to me" and I confidently embraced "Thank you God, for giving these children to me.. this is what I was placed on this earth to do and I am so grateful".


I read the most moving article that evening. Laying in bed, reminiscing and looking ahead at this life's ride we are on.. I read with tears streaming down my face. The words could have been pulled directly from my heart and daily thoughts, this article is based on my life and it's beautiful. I hope you'll also enjoy.  

http://www.kevinmd.com/blog/2014/05/remember-mothers-sick-children.html


Thursday, May 8, 2014

Eosinophil Hell



It’s been two days and we are still in shock.

To understand what I am about to share, you first need to understand what Eosinophils are, what they do and how they can help you or destroy you. This little diagram is a pretty good description.



When something harmful enters the body, your immune system responds and moves into action. However, for someone with an Auto-Immune Disorder, this process is broken. Instead of seeing a cold/flu as harmful, Annabelle’s immune system see’s chicken as dangerous and attacks – not just the chicken, but everything in her GI system that the chicken would have touched. Eosinophils should not be attacking anything in one’s esophagus, stomach, intestines etc – they should be waiting to fight other true dangers like the flu. Annabelle has a ton of Eosinophils in her esophagus, and that’s how we gain our diagnosis. Eosinophilic Esophaghitis (Eosinophils in the esophagus… it’s an EGID: Eosinophilic Gastrointestinal Disorder).


The problem with eosinophils in the esophagus, is based on what happens when they get there. The way eosinophils fight is to eat, eat, eat, destroy and destroy everything - finally they’ll release harmful toxins throughout the area to ensure everything is obliterated. Right now, the eosinophils are eating, attacking and destroying her esophagus. Let’s talk about painful?

When this happens, we call it an EoE Relapse – something has triggered her immune system to FIGHT and attack. Eosinophilic Esophaghitis is always there and she will always have the disease, but the goal is to keep it in remission at ALL times. The problem with EoE however, is that we don’t have a clue what that trigger is, there is no way to determine what actually sent her immune system into attack mode. It could be a multitude of things. If you can specifically pinpoint what made the relapse occur, then you remove that component, treat and calm the attack, and pray like hell that the damage done can be healed.

Understand EoE a little better now? Slightly? It’s ok. It’s taken me over a hear to speak the terminology correctly, and I study this stuff daily. I just wanted to share a little more to make it easier to understand the next curve ball that has just happened.


When Annabelle was diagnosed, her Eosinophil count was 40. That means, in a teeny tiny biopsy, under a small specific little area studied beneath a microscope, there were 40Eos/hpf in that one spot. Her worst area was at the bottom of her esophagus with 40. The middle of her esophagus was 25 and the top number was low. Immediately when those results came back, we removed every single food away from Annabelle, put her in a bubble, and flooded her with drugs and steroids as fast as we could. We prayed we could stop the damage and prayed harder she would heal. For months we kept Annabelle in a bubble until we repeated the biopsy and it showed the number of Eosinophils were dramatically lower and our treatment was working. For nearly 9mon we continued treatment until December. December was surgery day for several procedures, one of which came down to the realization that the bottom of her esophagus would never heal or work properly from the damage done from that first EoE attack. Therefore we made decisions towards a procedure that removed the damaged area and allowed us to rework Annabelle’s GI system a bit that she could still use most her esophagus – just with a little more help from the surgeons.

Tuesday afternoon our newest biopsy’s came in. And just as our GI told us, Annabelle is really sick, and in a lot of danger. This time the Eosinophils have flooded every part of her Esophagus from her throat to the stomach with an Eos count in the Upper 50s. This is so much worse than when we imagined. And much worse than when we were initially diagnosed.. the spread of damage, the sheer coverage of the eosinophils that have covered her and are eating and destroying my child is just unimaginable. How Annabelle is able to laugh, smile, eat and play just baffles me. It makes me prideful that she’s so strong, but at the same time I crumble knowing her strength comes from accepting this pain as a normal part of life. Without a doubt she is in terrible pain, she will occasionally complain, very rarely though – vomiting comes along with an EoE Relapse and she has been trying to vomit a lot more lately. But she pushes thru. She fights harder and tries to find more and more to laugh and smile about. Her strength is nothing less than heroic. But my baby shouldn’t have to live a life depending on heroic strength. She’s silently suffering and I didn’t know. I didn’t know she was so sick this time, and there is absolutely nothing that I can do to make all go away.

Please excuse the baby belle mucus/saliva on my sleeve and the filth! I blame the snow gloves and cluttered van on AK and the small people that ride in the back seat ;) This was Annabelle about a week before the scope/biopsy's. She has been trying to vomit a lot. The only good part about having a Nissen = she literally cannot vomit. Her stomach is sewn too tightly around the bottom portion of her esophagus to get anything up. So this is how she vomits. Right before I put her in the van this day, I did pull most everything off her tummy to make it a little more comfortable for her - but that's all the comfort I can provide.. we just watch her go thru this and pray it eventually stops.

 
Our immediate decisions were made between the GI and myself talking on the phone for quite some time. We discussed over and over everything in her diet and concluded that we just don’t think it’s Annabelle’s diet that could have done damage this quickly and this severe. She has been on small amounts of wheat but only for a short few weeks prior to the endoscopy – there’s no way the little amount of wheat could have escalated an attack like this. We are definitely still removing all wheat away, but leaving fruits and veggies because of fear if we remove too much of her diet - we will have a flood of other issues with liver / protein etc. Weve finally found a small, safe balance and we cannot jeopardize that yet. 
Between the two of us, we also made a preliminary conclusion that whatever has set this off, is likely airborne. That's right – it doesn’t only have to be food, it can be the water she touches, air she breaths, or even stress to bring on an attack. Based on the fact that the highest counts were at the top of her esophagus and visible damage in throat, we believe that it’s entering thru her mouth but not by food.

Controlling a food or something you ingest is 294610x easier to control of course. Fighting an invisible danger in the air?? …oh good grief! Can we catch a break?! PLEASE!

We had to sell our house and moved in with family since Annabelle’s last clean scope/look. The environment she lives in now is not the same as she did before. The seasons have changed and there is all sorts of crud in the air floating around. I asked our allergist/immunologist  “How am I supposed to do this? How am I supposed to prevent her from inhaling the air inside her house or outside? I just bought her first bike for goodness sake! She loves being outside! She is finally enjoying life and I now have to strip her from that and put her in a bubble. A sanitized, germ-free, allergen free, hypoallergenic bubble. Impossible. She made it pretty clear. 'Do nothing. Don’t fight because she’s loving life, and she’s going to lose that organ and everything else associated with it.' Her words were harsh, but truthful. If we allow Annabelle to continue to be exposed to whatever is initiating the immune system to fight, the eosinophils will eventually eat away at everything it’s attacking.


Our GI has indefinitely placed Annabelle on a liquid prednisone slurry, and instructed that I just begin to pray to move from twice x day to only once x day of the steroids. We have a mountain of other medications part of our EoE Action Plan and have begun the usual treatment. Only this time, the steroid dosage has been increased (prepare yourselves for my posts on Toddler-Baby-Roid-Rage.. it gets ugly.) and no more outside play. I have no idea how to begin tackling air inside a home beside a flood of air purifiers. I have no idea how to encourage and make a toddler keep a face mask over her sweet little face. We've had to do this before, but she was so sick during that time, she didn’t fight it. I just can’t imagine she will actually keep it on this time. We will work hard. She has to. We don’t have a choice any longer.

I picked up a few of the new prescriptions last night on the way home (thank you again, so very much from the bottom of my heart for Annabelle’s donations – it’s expenses like these that you make possible to afford and keep moving forward.). 

I called our hero in the doctor world and she and I talked for quite a while about what’s happened. We both have the same impression of EoE and have many suspicions about how her Immune System works and what else is really going on. Each and every time Annabelle would crash last year, it was usually in reaction to another change. Multiple systems are always affected when something begins to go wrong but always without explanation. Our big question is, “If there are a flood of eosinophils in her esophagus, and we know this because it’s the only place we’ve looked. How do we not know there are floods of eosinophils everywhere else within her body, attacking and destroying in all the wrong places? We don’t know what has set it off besides a really good, educated guess about airborns, but outside of that – how do we not know that her body is fighting other things and causing damage elsewhere too? Liver perhaps? That could explain a lot… a lot. She is making contacts now for us to see another specialist that has a lot of experience in Immunology. If nothing else, perhaps they can offer another perspective to the auto-immune world and why her body is doing the harmful things it is.




In conclusion, we are left with heavy, heavy broken hearts. Annabelle is very sick again. She is an absolutely crazy, silly, hilarious little monkey on the outside – but inside she is literally being destroyed with every minute. This is the shock and truth in the disease she’s fighting – this is the part where Eosinophilic Disorders become life changing to manage. We are grateful beyond belief to watch Annabelle’s energy and optimism, but do not mistake that as a healthy child. Our family is being stripped of heartache from the truth behind biopsy’s. Our little girl has a really really big battle to fight ahead. We have a lot of treatments to work thru, we have a flood of adjustments to lifestyles and we have even bigger prayers that a miracle can heal all the damage that’s been done already to her esophagus and we can safely manage this god-awful disease better moving forward. Next steps are to follow up with the new Immunologist, consult with our current allergist in Norfolk and schedule followup endoscopies/biopsys to keep an eye on our progress to slowing down this relapse and watch the treatment WORK! 






Tuesday, May 6, 2014

Biopsy Results Day

Today is the day we should expect to receive the results from last weeks biopsy's. To say I am a nervous wreck, is an understatement. We've had time to process the truth that Annabelle has relapsed. The news, while not surprising, did rearrange mine and AKs thoughts on how well we had believed our little girl was doing. I've begun to fine comb over all the foods she's eaten and been exposed to. The allergens in the air may have also initiated the relapse, or just stress in general. The worst part of this horrid disease is that the causes for why EoE goes into attack mode is so variable and without any tests. Most anything can initiate an EoE response, and while this particular disease isn't terminal, it's absolutely life-threatening if it's unable to be controlled. The control freak inside me has a really hard time accepting the fact that I CANNOT control every aspect of EoE. I can control, however, some things. The foods she eats and the amount of allergens in the air she's exposed to. That requires stripping my innocent toddler of the bits of happiness we've slowly been able to add into her life. She is enjoying meals around the table and holding hands to say grace again. She just got a new bike and loves to ride! Just last night both girls squeeled, yelled, laughed, giggled and played their hearts out in mud puddles.. I cannot imagine having to take these things away from her again.





Today our prayers are stronger than they've been in a very long time. I am praying and crossing all my fingers and toes for only good news from our GI when she calls with the results. I also pray for the ability to quickly schedule with our follow-up allergist so we can begin making decisions and find ourselves on a path to making Annabelle comfortable again soon.

Plans for the day:
Prayers
Prayers
Distractions
Coffee
Prayers
Coffee
Distractions
Prayers
Prayers
Distractions

and repeat. Until we hear otherwise.

Thursday, May 1, 2014

EoE - Endoscopy Round 3

Annabelle must have known there was a big day ahead. She woke around 2am and spent the rest of the night crying, begging for juice / water, uncomfortable and overall miserable. I have no clue what’s been bothering her so much at night, but it’s sure making for a sleepy family during the days.

At 2am we cut off all her feeds, and began the marathon of crying until 530a when we all surrendered, I asked AK to bring Annabelle into the bed with me and I snuggled her while he started packing all the bags. Mady asked where Annabelle was going as we were getting out the door and I explained “She’s going to the hospital again today sweety, the doctor is going to put a camera in her tummy and check to see if there are anymore boo-boo’s or if they’re all gone! We hope they're all gone, huh?” Annabelle overheard the conversation and was less than pleased to hear where she was going. I was taken back so quickly when I realized Annabelle understood what my words actually meant. This is a turn in the road for us. Explaining to Annabelle what is going on vs. shuttling her to doctors / procedures. I haven’t looked forward to this point and truly don’t know that I am ready. It's been coming and we've been more vocal to Belle more lately than ever, but it's still hard. It’s hard to explain to a 2yo what is happening when all this is so far above MY head! We keep it simple, very simple, and let Annabelle lead the questions as we provide high level answers, without lying to her. 

So far it's working, but more recently she's begun to ask questions that I can't lie to. Maybe I should? But that's not how we parent in this house. No surprises or sugar-coating the facts. 
"Mommy. No shots! Please!" That's the first thing that my child pleads out of her mouth when she learns we're going to the hospital. I tell her the doctors want to look inside her tummy to check for boo-boos. She agrees. She knows there are boo-boos inside her tummy. She knows food is what hurts her and she knows that she cannot run too much or play too hard or she will make herself sick/hurt. She accepts and is beginning to own all these things as part of her life. She is only two though, and while her vocabulary has just begun, both my children have been forced to grow up well beyond their years, entirely too quickly. The conversations I can have with these girls, I could have never imagined I would be able to have with toddlers.. but we do, because this is our life.. and understanding our lives and the odd ways things evolve around us, brings peace when peace and comfort is hard to find. 

So our days adventure began with just that. Curiosity and questions as to what we are doing at the hospital that day. A disappointment when we didn't exactly want what was about to happen. The car ride was long. She was ticked. She wasn't on board with going to visit the doctors. She definitely didn't want any boo-boos, and most importantly, she wanted her juice! She's fed nearly around the clock.. So the discomfort of an actual empty stomach was probably very new to Annabelle.. She begged to eat and have her sippy cup.. I begged for us to arrive at the hospital faster! (My favorite strategy = distractions! Lol)

While I checked in, AK and Annabelle played games looking out the window. We were the first patients of the morning and things were quiet and slow.. I appreciated that. After all, the girls series of questions prevented me from having my cup of coffee before we left the house.. quiet and slow is just the morning we needed ;)




Finally it was time to head to the back. Sweet Annabelle stiffened and nearly jumped in my arms, "hold me mommy, me carry you". 

AK collected our things as I followed the nurse back and we began our hour of pre-op questions, medical history and consults with the anesthesia team that would be with Belle in the back and keeping her sedated for the procedure. 


The anesthesiologist asked if we had ever used a drug to 'relax' belle before she is taken to the back before. We haven't. It's never been mentioned or offered, but she also hasn't ever fought terribly when the doctors take her out of my arms to head towards the OR. All I could think that morning though, we're the questions my girls kept asking me.. "Where is Annabelle going? What are they going to do? Is she ok? NO SHOTS MOMMY!" I looked down at Annabelle who was curled over my chest like a baby monkey and my heart sank. The last thing I want for her is to be scared! I agreed to the loupie drugs and am happy I did. While it made her absolutely drunk, it also made her quite unaware of what was going on but still happy. 



When it was time to take her to the back, the nurse asked if I would like to accompany Annabelle until she's fully sedated. I don't know why, but for a moment I was hesitant.. I agreed of course but I was nervous. For the both of us. I didn't want to see anything I don't like and cannot control. At the same time, I do want to be with my baby every single step of the way, whether I like what's happening or not. And worst case scenario, if something makes her worry or become scared... Then I would be right beside her until she's asleep.

It took several minutes until everyone was ready to put her under. When that time came, she did fight the gas and a sheet of panic covered her face. I quickly leaned over and sang her name until her disoriented eyes finally reached mine. I smiled and told her she was ok, I told her to have sweet dreams and I am right there. She closed her eyes and I was quickly ushered out the room. 


Again, my favorite strategy to bad situations = distractions. My favorite thing in the world = Food. We went downstairs to meet my mom for a quick breakfast sandwich and back upstairs to wait. The procedure was a little over an hour until they called me. The sweet nurse knew just what I wanted to know the moment she saw my face. Without having to say a word she said to me "yes, she is crying for you mom. She's pretty upset, follow me" my long legs moved three x as fast as hers did thru those double doors to recovery! I found my baby absolutely terrified and wobbly beyond belief. Most the time she is just very ticked but sleepy and disoriented after sedation.. This time, she was furious! I can't say she was in as much pain as I've seen her before, she was just really mad. Anesthesia will do that though, so I hear. It took the entire time in recovery to calm her down. Mostly she just wanted the IV taken out of her hand. She was determined to have it removed. "Take this off! Take it off mommy! Off! No tape, take it OFF!"

Finally, the steps of high heels that I had been waiting to hear.. She was on her way to consult with us about the procedure. I held Annabelle tight and kissed her forehead. Our doctor joined the room with a face of disappointment. She didn't waste a moment to tell me what I didn't want to hear "Mom, she is covered with signs that the Eosinophilic Esophaghitis has relapsed. It's spread from the entire length of her esophagus. She has thick patches of plaque, longitudinal furrows and rings to indicate we're in an EoE outbreak. Now tell me again.. What is in her diet?!" I mumbled and silently told myself to make myself speak, answer the questions because the doctor doesn't have long. I told her everything we were eating and she decided to immediately remove the wheat, bread, pasta. I asked if we should return to our EoE Action Plan that our doctors have already worked to develop and she declined. She explained that from the looks of her esophagus, she doesn't want us doing anything at all until she speaks with the allergist and consults with our doctors at CHKD. 

The biopsys should be in by next week. Those will provide more insight as to just how bad Annabelle is from an Eosinophil count. A normal esophagus has zero eosinophils. When Annabelle was diagnosed, she had over 40 in the bottom part of her esophagus, 25 in the middle and 15 in the top. I have absolutely no clue what the count will be after this scope. We are praying with everything it's low and the damage already done is minimal. 

We drove home in sheer silence. AK mumbled, "Im sorry we're having such a bad couple days.. Im sorry about this morning, Annabelle will be ok, we'll get thru this too". I was speechless and angry. Annabelle was exhausted and upset. Emotionally she was upset during the car ride home, she kept begging for me to hold her. I held her hand until she fell asleep (and so did my arm) and when we got home, we all crawled in the bed and wrapped her up with more love than you can imagine. She watched Mickey Mouse and slept for the rest of the day. 

In the meantime we wait. Waiting is the absolutely worst thing in the world. I hate to wait. The biopsy's will come in and then the rest of the team will be consulted to determine an action plan for treatment, how to calm down this EoE flare, how to treat the damage and last but not least, we will begin working to see just which foods can stay or if we will be losing all food all together again. My prayers are being generated in a thousand different directions. But my gratitude to all your prayers are endless.