Sunday, January 25, 2015

The Perfect Compromise

Dare I say it? We had a great appointment this week. They did not share great news with us. Annabelle is still actively battling a relapse of EoE. Our trial for wheat and chicken was failed. But, we met with a team of knowledgeable doctors and talked as adults and caregivers of a child, a person - we decided the best game plan for Annabelle – together. Finding the blessing in a painful situation, we consider a win.

Annabelle did wonderful for the appointment. We waited nearly two hours before a doctor came to speak with us. The afternoon was long, everyone was cranky and hungry (and nervous), but we all made it out with no tears. When the doctor came in our room, Annabelle immediately asked if he was going to poke her. I promised there would be no pokes (needles) today. Once that was clear, she was relaxed and chatty. She showed the doctor her tubey, took a deep breath and explained that she was 3 AND A HALF and her sissy was 5 AND A HALF (This is quite a thing.. the ½ ages that is.)

Of course the conversation began with my pregnancy, leading to her first signs of FTT, then diagnosis and all the issues in between. Once we landed at current-day, we engaged the other two doctors in the room. Both the GI and Immunology doctor shared their expertise with us on the management of Eosinophilic Esophaghitis and we asked multiple questions. Their primary focus was to distinguish the cause of relapse and to clear her GI system of Eosinophils before they do more damage than they’ve already done. My primary focus was two-sided, I wanted to fight to keep her foods and I wanted to fight against more drugs.

Finally came the truest question. The doctor sat down in a chair and looked dead at AK and I both. He closed his notebook and folded his hands in his lap; “What do you want for Annabelle. What do YOU want to do as her parents?” Obviously he cannot give us a true diagnosis for our baby. He cannot make this unfair life sentence of hers go away. He cannot rid her small body of an uncontrolled auto-immune disease. But he had the compassion to ask us, what is it that we prioritize the most in our parenting of this little girl. We cannot have it all, but if we had to choose one thing that we wish for, what would it be.

We looked at one another and didn’t really know how to respond. I swallowed back all the emotions going thru my head. I exhaled deeply over every single flash back that ran thru my memory: tears, Annabelle tears, begging for help, NG tube changes, bandage changes, burning granulation tissue off her stomach, handing her over to surgeons, pacing waiting rooms, brain scans, emergency room frustrations, mady asking me if her baby sister was going to die and go to heaven, myself sitting in church with tears pouring off my face countless Sunday’s, my pleas, medical bills, seizures, swollen eyes from a confused baby crying hours on end, EEG, baby straight jackets, home covered in medical supply, feeding schedules, pharmacy trips, IVs, more surgeries, unknown fears, AKs tears, pacing our home for hours on end, faking the smiles, lying about the worst, living bitter, missing milestones, traveling hours for hospitals, floods of abnormal labs … … … and then I looked down at my daughter. She’s sitting next to me snacking on strawberries and watching a movie. She's happy.

Quality of Life
If there is nothing else in this world we want for our daughter, it’s the best quality of life. We have spent years trying to heal her body, find answers and performing medical treatments that doctors have promised would give her the best help in the long run. All the while, we’ve stripped her from her own quality of life. We’ve subjected her to more painful tests and procedures, we’ve forgotten to allow her to be a toddler. I don’t even remember her first steps or first words because I spent all my time researching, paying bills and driving her to another hospital. Our daughter has sat at a table and watched everyone in the world eat meals without her. She’s isolated from everything she enjoys at the expense of this disease. We want the best quality of life we can provide, safely. 

In the past 6 weeks, Annabelle has grown. She has absolutely EXPLODED in personality and strength. Not to mention, her bone structure has grown in height, she’s gained almost 4 pounds (4 POUNDS!!!!!!), her hair is growing for the first time and she’s resting. She’s laughing. She’s sleeping at night, napping during the day. She can run around the house without collapsing. She can probably join us for a walk around the neighborhood for the first time in her life. Before December, she couldn’t walk 4 houses to the end of our street without tiring. Annabelle’s color and skin looks and feels healthy. She’s eating and content. Our instincts are telling us that he credit goes to the foods now in her diet. Annabelle’s never had protein in her life, she’s never had wheat before now. The combination of those two foods plus the fruits and veggies she can eat – she is thriving better than I ever could have prayed she would. This is the quality of life we wish for our daughter. That is the ‘normalcy’ we want to retain.

The doctors agreed with us whole-heartedly. They explained that while we do not know what is happening to Annabelle’s little body on the inside, we don’t know exactly what her true diagnosis is, but making her time here as comfortable and normal is possible should continue to remain our top priority as we move on in her care. He agreed to work with us to decide what that would be and as a group, we all decided Annabelle’s treatment plan.

For the next 90 days. Annabelle will continue to eat chicken, wheat, fruits, veggies and coconut milk. We cannot lower her around the clock tube feedings of Elecare, but we are not removing any foods from her diet either. (Nor are we adding any of course). We will unfortunately, be adding more drugs back into her diet. She will go back on steroids, now twice x day, remain on singulair granules, omeprazole and mineral oil. This wasn’t a terrible compromise. I hate that we are back on steroids. For so many reasons, I HATE steroids. Their long term affects are terrifying, not to mention the immediate side effects (hello crazy roid-rage baby again) but it’s a compromise. We get to keep foods that we know are nourishing her body.

In three months we will perform another endoscopy and round of biopsys to determine if the medication is working as intended. If it hasn’t cleared the active eosinophils within 90days, Annabelle will have to come off foods and back to 100% tube feedings with drugs. Our prayers are for the meds doing what they’re made to do and us to have clear biopsys’s in a few months. In the meantime, we continue to fight for answers!

As the appointment wrapped up, I asked the doctors, in their experience, what was the possibility of ever coming off Elecare and tube feedings. The answer was grim, vague and he told me not to focus down that road at all. Many people will never come off those feedings and we are nowhere close to having those conversations. My gut told me the same answer, but I wanted to hear an expert opinion. We asked the doctors many questions around Eosinophilic Esophaghitis and it’s relation to children with other diagnosis – his answer was again, vague and grim. Their best advice was to continue the road we are on. Do NOT stop fighting for an answer for Belle, she desperately needs a diagnosis before more is damaged beyond our control, but to keep her quality of life in perspective and never lose focus. We are not promised tomorrow, make the best of every single day we’re given – fight but remember to laugh and breathe.

We left the hospital late that night, around 630pm with labwork to complete. Our minds were racing but our hearts were content. Annabelle was happy and in a great mood. I never explained to her what happened or why we were there. I never threatened her with the potential to not be able to eat bread and chicken anymore so she didn’t have that overlying fear about the appointment. We simply went home and enjoyed dinner as usual. 

Madelynne was very curious as to why we were at the hospital so late at night. She wanted to know if the boo-boo’s were still in her sissy’s tummy and I told her yes. She wanted to know if she would have to stop eating all food again and we explained to her that mommy and daddy talked to the doctors about that. We explained that, “we told them just how much Annabelle loves to eat her chicken and dinner with the family, how much Annabelle is growing and how happy she is now. They told us that she can keep eating if she starts to take a new medicine. The medicine will make her a little more cranky and upset at times, but it will help the boo-boo’s. You’ll help her when she gets frustrated, right?”
Madelynne understood very well and Annabelle was clueless to our conversation. The night was wrapped up quickly as everyone headed to bed. I called our doctor and talked to her for a long time over what happened that day, we were both pleased and discussed our game plans together. The night was late and AK and I were exhausted.
We said our prayers, onward to a new day. 
Finally, a battle won.

Wednesday, January 21, 2015

The call came late last night. Biopsy's indeed confirmed what our doctor was visually seeing during the Endoscopy. Annabelle Eosinophil counts were 45x hpf, they're not the worst we've ever seen, but they're pretty close. The dangers of this scope are that we have only trialed for about 6 weeks, and NOT heavily. The amount of trial foods she eats have NOT been the majority of her diet, she's had them for a handful of weeks and were already seeing the disease actively respond.

The good part in this however, is that the top and middle parts of her esophagus were not nearly as affected as the bottom. This is a pretty good indicator that food is the culprit to this relapse vs something airborne.

Tuesday, January 20, 2015

Waiting is the worst

I cannot take the anticipation! Biopsy results are still not in and the waiting is killing me. They've never taken this long before. I am so impatient but trying to stay focused.

Annabelle is doing so much better this week than last. After the procedure, she had a terrible cough (pretty common after endoscopies), but she's just becoming so much more aware of it than ever before. When she wakes in the middle of the night from coughing, she cries until we soothe her. When she's hurting, she hits herself until we acknowledge the pain. Recovery itself is getting harder.

Beside the couple days of coughing and choking, she's doing well. She's had terrible BMs that require floods of mineral oil in her diet to encourage movement. They're awful. We keep her diet rich in fiber to avoid it as much as we possible can. 

Fingers crossed for news soon. Prayers our biopsy results are favorable for Annabelle. Dear God, please let there be good news hidden within the fears were sharing right now.

Wednesday, January 14, 2015

Upper Endoscopy

430am is what time Annabelle began our day. She woke up crying for milk. AK went to her bedroom and tucked her back into bed as he told her she couldn't have any milk and she couldn't have a cup.. well, that didn’t go over very well. She cried to herself in her room for nearly 30min before we finally went back, picked her up and brought her to our bedroom. She was just so tired, she should have fallen back to sleep but she was upset. 
Her stomach is never empty, she is fed around the clock. Annabelle doesn’t understand the sensation of feeling ‘hungry’ and she apparently didn’t like it. We turned SuperWhy on the TV and got dressed and ready for the day.

Our nurse arrived early in the morning and Mady woke much earlier than she typically does as well.. she was so worried about her sissy, she wanted to give her a kiss goodbye. Annabelle said bye-bye to her sissy and daddy and we left. Our nurse, Ms. Pat, Annabelle and I headed to the hospital once again. (Daddy needed to work)

The Endoscopy Unit was empty! We were the second to arrive for the morning which was wonderful. Shortly after we registered and decked out with hospital bracelets, they took us back. Annabelle leading the way thru the big doors and down the sterile white hallway.. skipping to her own song as she hummed a little beat (probably ‘Let it Go’ from Frozen..) The nurse asked if she was clueless about what was about to happen. I laughed a little and said, ‘Actually, no. She knows exactly what’s going to happen… we’ve done this 7 times. It isn’t new for us. Fortunately though, she’s in a great mood today. That or she is just so tired, she’s delusional. Either is fine with me’

The Doctors and Anesthesia team all checked in with us, nurses made their rounds, everyone confirmed her birthday, allergies, and procedure a hundred times – I answered as many questions as quickly, efficiently and without detail as I could. “Does Annabelle have anything abnormal about her medical history?” – Dear God is THAT a loaded question! As I answered their concerns, Annabelle snuggled up to Ms. Pat; they played games, watched little videos and made faces at one another. Oh, the blessing to have another set of hands and distraction for Belle during things like this is absolutely priceless!

Finally came the anesthesia conversation. They asked if she’s ever had any issues with anesthesia before. I said, ‘yes’, she had a small issue with Propofol a year and a half ago during an EEG. I understand it’s a completely different procedure and use of the drug, but I mentioned it. When they attempted to sedate Annabelle for the EEG, they used so much propofol that the anesthesiologist got nervous, Annabelle never fully went under and they finally called off the procedure bc it was becoming unsafe.

Here’s the video of that EEG and their attempts to get her under:

The doctor clearly wanted to use propofol for the Endoscopy this time but I was hesitant. To be honest, I really don’t like the cocktail we’ve been using (gas sedation + breathing tube while she’s under) but I had reservations about making any changes. I’ve said it a million times, I HATE ANESTHESIA!!!!! I am ALWAYS terrified that I will never see my baby awake again after she’s been put under. I know the chances are so low, I understand the doctors are brilliant at what they do, but you can only be lucky and fortunate but so many times. It's just one of my biggest fears and I don't think I'll ever shake it. Annabelle is constantly under anesthesia and never, not one time have I felt comfortable with it. To ask me to change everything we’ve done in the past and try something new? EEK!

I asked many questions and made sure I was clear on what they would be doing and how they would be administering the drugs. I confirmed twice that they had her weight correct on their charts and then I squeezed my baby girl a little tighter.

Before we knew it, the nurse was ready to take her back to the OR. Annabelle gave Ms. Pat and I both a kiss and we told her we would see her very soon. They unlocked the brakes on the bed and off she went. Stopping at the nurses desk for a few stickers and around the corner at the end of the hallway, we watched as Annabelle pointed to which way she wanted to go. I stood 10ft tall at my confident, brave little girl. We gathered our things and texted AK “She’s been taken back.. and now, we wait”

Pat and I grabbed a quick breakfast and coffee and sat back down in the waiting room. I made Belle’s sippy cup of milk, gathered her tubing to make ‘bubbles’ and checked the time over and over. Finally, I heard the best words, “Family for Bishop – is the family for BISHOP here?” We rushed the nurse threw the doors and I impatiently led the way towards my baby girl. I could see her bed and her little pediatric jammies at the end of the hallway, the nurse chuckled “She’s perfectly fine mom. She’s not awake yet but she did great.”
Yea, I don't care.... I need my baby!

To my complete shock, Annabelle was truly still asleep! I’ve never seen her come out of ANY anesthesia this way before. Every time she's waking from anesthesia, she's hysterical, inconsolable, crying, disoriented, scared.. never have I seen her sleeping.

I watched my Annabelle snoozing. She was so quiet. I listened to the beeping of the machines she was connected to.

I watched her even more and checked the time..... it's been 10minutes.. ok, so when is she going to start waking up?

The Doctor finally comes to see us, her head drops and I know what she's going to say. She starts by telling me how well Annabelle did during the procedure and explained that her Nissen was intact. The nissen is not tight, but it's still secure and the muscle is in the right positioning for where we want it to be. She told us the G-tube looks excellent from the inside.

I waited for the news, and then it came.
"Annabelle appears to have active eosinophils in her esophagus. There were multiple white plaques, longitudinal furrows, esophageal rings etc all along her esophagus. I'm really sorry. 

We discussed a preliminary guess as to what caused the relapse (beside the obvious, her new foods.) there is also the possibility that Annabelle could be reacting to something environmental. 

Once I heard the news that we came to find out, I was finished discussing it. My attention turned back onto Annabelle. She was still asleep and it's been almost 20 minutes.
The doctor and I agreed to wait for the biopsy results from pathology before making any decisions as to what we need to do. Until then, I just don't want to talk about it.

Annabelle finally opened her eyes. She looked around and went back to sleep. The next time she opened her eyes, the first thing she recognized was the IV in her hand. Typically, that is what she dwells on - getting the IV out of her hand. This time, she didn't care. She looked at her other hand and smiled. Apparently during the procedure, the nurse or someone put a sticker on her hand. She was very pleased to see that. 

I asked for some juice and she drank a little. Very slowly she was waking up. I kept telling the nurse how impressed I was at Annabelle this time. Finally, the doctor came in to check on her. She was the same doctor that talked me into trying a new method of anesthesia. I thanked her profusely and asked that she reflect whatever she needs, in Annabelle's chart that we repeat this same plan the next time we're here. It was flawless. Albeit a little nerve wracking that it took over 20m for her to wake up. But once she did, she was so calm, happy and comfortable. Not one tear was shed the entire morning. We couldn't have asked for anything more out of the staff and Annabelle. 

Once we were home; I emailed madys teacher for her to tell mady that her sister was 'ok' and at home (she's been so worried lately and I knew she would be distracted at school until she got the news). Annabelle made herself comfy on the couch with her favorite pillow and blanket. I hooked her Tubey to make bubbles to help rid some of the excess gas off her stomach from the procedure. She had a lot of bleeding from the biopsys they took. Maybe they took more than the usual? I typically see a small amount of old blood here and there during her feeds, but I've never seen this much. By the late evening it had slowed down and appeared to be healing (old blood vs bright red).

As our nurse snuggled Annabelle to try to get her to rest, I decided to exhale and join AK for lunch. After all, the day started at 430am and everyone was just exhausted. Annabelle got plenty rest during the day and Madelynne was beyond thrilled to finally see her sissy that evening. They played more Uno, laughed and Annabelle told Mady what she did that day. The conversations were priceless. 

As bedtime approached and everyone was being tucked in, AK and I couldn't help but stand back and reflect on the day we've had. Each struggle comes with a blessing. Each bump in the road is a sign that were at least still on the road. Despite daily frustrations, we are completely blessed to be in this life with these two amazing little girls. Our hearts are in our throat about the biopsy's but we're trying hard not to think about them until they're back. We know the news is bad, we just don't know quite how bad it will be. Our prayers are that the results will be within a range we can work with. But our primary focus is this little family we have surrounding us. The warm home we have while the temperatures outside drop. And the delicious snacks in the fridge that we can devour when the kids fall asleep ;) 

Monday, January 12, 2015

We are stronger than this challenge; and this challenge is making us stronger.

Tomorrow we take our baby girl for her 7th Endoscopy in less than two years.
Tomorrow morning, my heart stops once again.
Tonight my heart races and I want to puke.

We are trailing so many foods right now. Recklessly. Annabelle has been eating wheat, soy and chicken. Typically with this disease, you trial one food at a time and scope/ biopsy to consider it a pass or failed trial. Tomorrow, we will go in and take a look at her upper GI system.
The doctors will explore:

  • any visual damage of her GI system from the disease, Eosinophilic Esophaghitis.
  • her G-tube site, and
  • the Nissen where her stomach and esophagus are sewn together. 
I have a lot of concerns about the integrity of the nissen and whether or not everything is still intact. If the Nissen is not still intact or is damaged, we will schedule with our main surgeon and he will have to redo the Nissen surgery (which we desperately do not want to have to do again. It's quite intense and requires a helluva recovery).

Sometimes I am blessed/cursed with a gut feeling prior to a scope, whether or not I believe the results will be good or bad. I have a yucky feeling that the results will not be in our favor this time. I don't have anything to go on beyond Annabelle's persistent cough and sheer luck. Luck that we never seem to have, so if we wish for good results - our luck will deliver us with bad. I hate being a pessimist, but I also hate disappointment. Something just tells me we won't have a great day tomorrow.
I pray I am wrong!!!!

Annabelle on the other hand has been doing SO wonderful. I cannot begin to describe how proud of her I am for trialing these foods. She goes back and forth between having an appetite and not wanting to eat anything. She hasn't eaten a ton of the foods we are trailing, but I think she's eaten enough to present indicators for the biopsys to pickup. She's been a trooper.

The most incredible part of the last month and a half we've been trialing, is the amount of growth and development I've seen from her! I literally cannot believe my eyes as I see her energy and strength. Literally. She's awake and so alert. She's very verbal and full of energy (sometimes a bit too much, but hey, she's 3!). She genuinely appears to be thriving from the nutrients she's absorbing from all these new foods.

The biggest news, her hair is growing. Yes, HER HAIR! For the kid that has fingernails and toenails that barely ever grow, and hair that NEVER EVER grows, she's actually growing hair! It was so brittle and frail in just October that it caught the attention of the doctors in Boston, and now it's getting longer and thicker. Absolutely, absolutely amazing. Albeit, a little nerve-wracking because I KNOW this is NOT typical Annabelle behavior. This is not typical growth for our Baby-Belle, but I am happy for the progress... and I am really, really happy to see my little girl sporting a pony tail for the first time in her life. Finally, at 3.5yo, we have a pony tail!

The 24hrs prior to a surgery or big day is always stressful and distracting. Today was no different. On the drive in to work I heard a news story that really tore at my heart strings. I remained distracted all morning despite the work in front of me. All I could think about was Madelynne and something bad happening to her. I kept directing my mind towards Annabelle because I knew all these thoughts were likely stemming around her surgery tomorrow morning, but I couldn't. They kept going back to Mady. Finally, around noon, I couldn't take it any longer and I went into crazy-mommy-mode and emailed her teacher. I apologized for sounding insane but I just needed to check to make sure Madelynne was alright in school. A few hours later she reassured me that Madelynne was fine and had a good day. I exhaled.

The afternoon went by very fast. I confirmed tomorrow mornings appointment and arrival times, and before I knew it, I was late leaving work. I picked Mady up from daycare on my way home and as soon as I saw her, I could tell she was upset. We got to the car and I scooped her up, "Whats wrong baby?" She just started bawling. She couldn't tell me what was wrong but kept saying that she had a really bad day. I told her that the teacher said she was fine and she agreed... then she repeated again and again that she was "just upset". As she is getting older, she's becoming more and more wise about her sister. She asks about death, sick children, what it means to be 'blessed', she asks why we thank god for our health when Annabelle is so sick, she asks what will happen when we go to the hospital and what will happen if Annabelle doesn't wake up. She asked if I will be sad... she is worried that I will cry too much. She has so many worries that a 5 year old shouldn't have but struggles to find the words to explain the confusion in her sweet young mind. I wiped her tears and we headed home. I promised Madelynne that her sissy was home waiting for her and I bet she's excited to see her.

We walked thru the door and quickly changed for dance class. Annabelle spent most her time watching her sissy from the door window. Waving at her big sister every time she looked her way.

Tonight, as I sit here and update, AK is finishing dishes and the girls are snoozing upstairs. We remind ourselves again how blessed we truly are. Despite life struggles, we are blessed beyond imagine. We are blessed for so much, but most of all, we are blessed to have you with us on this journey.

This is where I beg for our prayer warriors to do what you do best. 
Please, take a moment tonight to pray for good news tomorrow for our Annabelle that we all love so dearly. Pray for a healing body and the safety of the foods she loves and needs to keep so they can continue to nourish her body. 
Pray tomorrow morning as you get ready for work, school, your first cup of coffee or settled in for the day; take a moment and pray for the doctors that will surround Annabelle. Pray for the steady hands and knowledge to see all the things they need to help us. To continue to guide us. To deliver us good news. 
Pray for the anesthesia team to safely put our little girl to sleep and to quickly wake her back up. 
When you send your little ones off to school or when you pass a school bus or see a small child with backpack on, pray for my Madelynne that will go to school tomorrow morning without seeing her sissy, as we will already be in the hospital. 
Pray for Mady as she rides the bus to school and concentrates on all her important kindergarten things while her little heart and mind are in a completely different world, worried about her baby sister. 
Lastly, say a small prayer if you have time, for the ease our minds and hearts tomorrow as we once again hand our daughter off to a team that will carry her away from our arms. Pray for our strength to stand when we can no longer see her down that long hallway and pray that we remember to breathe during every second that passes until we can see our baby girl again. 
And we will pray for you. We pray every single day for all the family, friends, strangers and anyone else that has crossed our paths. We pray for you and your family each and every day. We pray for all the children that fight these lifelong battles. We pray for all the parents that walk our shared footsteps. We are so very blessed for all we have. We recognize our blessings and we thank God for every one of them. We thank God for you. 

Friday, January 2, 2015

2014 let's live - 2015 let's FIGHT

I don't believe in New Year's resolutions. Our family typically doesn't celebrate or put forth much energy into New Years beyond food.. bc again, most all celebrations in our family revolve around food. It's a never-ending battle and tradition that won't break. We don't give into the 'this year I will not curse, or I will lose x amount of weight..' Our goals are constantly revolving, life is always changing. But turning a calendar over into a new year, sure brings light into how the last year felt and what you see for the future...

Last year, our New Years was spent in MCV emergency room with Annabelle fighting everything she had. It was the first time her little body gave away from not being fed. The threshold was just shy of 5hrs without food and she was losing consciousness and stats were haywire. Doctors had told me how dangerous it would be to Annabelle's little system if she went a duration without being fed, her ammonia levels would spike and we would start to lose our little girl. That fear fed the energy and fight I gave to MCV that night, the reality of the dangers then began to show themselves... I pleaded the staff to let me feed my little girl and they continued to deny my request and insisted she needed further xrays before I could feed her again. I continued to fight and had our doctor call the hospital to explain the situation - by the time the phone call was made, it was too late - Annabelle was spiraling out of control and FINALLY caught the attention of the right doctors she needed. They read her labwork and working diagnosis and that's when the team recognized the danger our Annabelle was in... we spent the next week in the hospital because of that New Years night. She was so sick, she was in so much pain..

Our nurse had just started working for us. We spent months upon months interviewing and trying to find the right fit for our family and someone that we trusted with Annabelle. An angel in disguise was sent to our home last year. Annabelle fell in love with her immediately and I was so grateful for the bond they were building. New Years Eve I believe was the long day, into the late night that made the two of them inseparable. Annabelle was in such terrible pain, I was frightened and mad, in the middle of the chaos of an ER on NYE, our nurse was everything our family needed to keep the pieces together. A year later, we couldn't live without her. I owe all of Annabelle's progress to Mrs. Pat over this past year.

2013 was horrible to our family. We lived most days in fear and hating the past, present and future. We were a bitter, exhausted, frazzled and angry family. At the strike of midnight, alone in a hospital room with the machines surrounding my daughter beeping, my other daughter and husband 45min away, I looked over the Richmond skyline feeling guilty. What if the unthinkable happens to Annabelle? What if she begins to lose the fight she's dealt with in this life? What memories of my daughter and family will bring a smile to my face when I reflect back? There were very little. I sat in that hospital room alone all night and never fell asleep, I prayed to my daughter and promised that I would make the most of 2014. I promised that I would slow down and begin seeing life for what it was, despite the cards we were dealt and I would put our fight for answers on the back burner to enjoying life.

AK and I had to mourn and bury the idea of who we always believed our daughter would be and how our family would grow to become. When we began to learn our daughter would not be a healthy thriving little girl just as Mady and most others, we were devastated. We fought for 'normalcy', we were broken every time we had to surrender more and more of that energy to making our family 'normal'. Every holiday and life event was opportunity to remind us again that our Annabelle was unique to our family. It hurt. It's painful to admit but it hurt all of us. I promised Annabelle and our family that from 2014-on, we would stop hurting and caring about how the rest of the world moved and we would only focus on our little family and live each day to the fullest with one another.
We've done just that.
We've taken daring steps since making that decision, sometimes reckless but ultimately for Annabelle and ensuring the smiles on all our faces. Should she go to birthday parties with a compromised immune system? Heck with it! Let's go! Well wash our hands a lot while we're there. Rest plenty during the party.. And even days when she isn't able to enjoy any of the event, she still gets to be outside and see other kids and interact however she's comfortable. 

A train ride away from our homes security and all our medical supply? Pack your bags, we're going to see our nations Capitol and the Zoo. 

 And even enjoyed some baseball games..

Many things we still cannot attempt as a family. Many, many events we do miss because of Annabelle's condition, but in every decision our priority remains = "what makes us happy.. Within reason and safety, what makes our family feel more alive than any ever.."

I prayed with everything that 2014 would bring us an answer and diagnosis for Annabelle. I prayed harder though, for a remarkable quality of life for our daughter and I believe that is what God has blessed us with. He's directed us towards a brighter path of hope for the future, he's protected us during the times we decided to live on the wild side, God has sent an Angel and her family directly from heaven as Annabelle's nurse, we're been blessed with a new home and incredible neighbors, but most of all, God has given us another year to meet some of the most humble, caring and faithful people that we would have never had the opportunity to meet otherwise. Annabelle's love and contagious energy has won the hearts of so many and our family could never be more thankful for the blessing to call each of you our family in this world of 'non-normal' were living in. 

Goal for 2014 was to live
Goal for 2015 is to fight

We now know how to live, breathe, laugh and even cry without judgement. This year, we plan to put our Viking helmet back on and fight. We spent very little energy fighting for answers this year. Most our focus was living and quality of life. It's time now to fight again and get answers and help for Annabelle finally. 2015 is guaranteed to be a challenge, heartbreaking and for certain a lot of frustrating closed doors, but we are ready. Annabelle is ready. It's time. We need help. We need answers. We need a damn diagnosis for this kid! Bring it on 2015!

Tuesday, December 30, 2014

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 7th 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.