Monday, July 18, 2016

Quick Update



It's funny how this journey plays with your mind and emotions, how we become callus to information and feelings but still somehow are hurt by others cruel opinions and statements. Between all the chaos, we find our own little niche on a scary path. We learn that only ourselves and our private thoughts are trustworthy.

Annabelle is blessed to have such incredible prayer warriors that love her unconditionally. Our family could never put into words how grateful we are for each of you. But please understand, at times the more information we share on our little girls condition and her fight, the more we expose ourselves to criticism and opinion on how we should be caring for our little girl. That being said, we enjoy most, being able to share our victories with you guys, pictures of her having fun and how she's doing and updated on where we are. 

Annabelle is sick, her diseases are not getting better, going away or slowing down - we are just controlling them the best we ever have. We are collecting more diagnoses with every test we perform but we're barely getting closer to discovering her Global Diagnosis. We need this diagnosis to save our Annabelle, but gosh it's such a SLOWWW process. We don't have the time or patience for 'slow'. So please, bare with us - continue to pray for Belle even when I can't provide an update, bc often I don't have an update to share. I only have a worried heart, sick little girl, needy family but adorable pictures to offer. So if our posts are only that, please bare with us and keep praying. I do believe that one day we will gain her diagnosis, we will find the best doctor to help her and we will all breathe a little easier. Until that day, let's celebrate every victory together and love this fighting little girl!


 

Lately, Annabelle has been crying and begging for 'normalcy'. She has tantrums more now than EVER about how excluded she is from her sister and friends. She gets so frustrated that she can't swim/play/run as long as others because she tires too easily - for that, I cannot WAIT for her wheelchair!!!!
She's also had a heavy heart over foods, snacks, treats, drinks etc. One of which was pizza. She's wanted pizza so badly so I found a place that had safe ingredients and other moms have promised they are allergy safe. Annabelle had a whole wheat pizza with tomato sauce, avocado and olives. It was her first very own pizza and she couldn't have been more happy. She ate one small slice, and then ended up in the bathroom for nearly 45 minutes in pain and nothing staying in her little system. Since then, she's cried that she never wants pizza again because her "tummy's boo-boo's don't like it". Now, im on a mission to figure out how to make one of my own that should be safe.





We're headed to Cincinnati in two weeks. (YAY!)

Monday, August 1st
We have our 504 / IEP meeting with the Elementary School to determine whether or not the school will accommodate our nurse and how we will proceed with Annabelle's needs being met in the classroom. My prayer every day is still that the school will make the best decision for Annabelle and that we can all come to an agreement on what she deserves. The only thing that I am standing my ground on, is that Annabelle will not attend school without her personal nurse. I do not see why this should be an issue, but our prayers are that everything does fall in line and works out.

Wednesday, August 3rd
Annabelle and I will fly from Washington DC and land in Cincinnati Ohio at 8:35am. We have an appointment with the Wheelchair Clinic at 10am where Annabelle will be fitted into her brand new, custom built wheelchair. They want to make sure the chair is a perfect fit for her and all adjustments are specific to her size and that she's able to maneuver it well on her own before we leave with the bill. (hopefully they'll also show me how to break this thing down to fit into my car!)

While we are there, I am also trying to schedule a consult with our GI doctor to touch base with him. We need to speak with Genetics to ensure our next visit in October will cover all tests that we need to do while were there. I would *love* to meet Motility but I know we can't get in.. their wait list is far too long. We do also need a follow-up with the Sleep Clinic from the Sleep Study we did while we were there last. That final report showed "88 episodes of arousal during sleep" and "78 PLMs noted". She's been given a diagnosis of 'Periodic Limb Movements Disorder', which could be the explanation of why Annabelle twitches a bit, never sleeps a full night without multiple periods of waking up and has daytime impairment where she's exhausted and falls asleep during passive activities. I would like an appointment to discuss our next steps/treatments for this new disorder.

In addition to those departments that I am waiting to hear back from, we also need to see Dermatology. The bumps that are covering Annabelle are unbelievable. I am terrified of this appointment for her. I hate that they're going to freeze/burn them off - she has over 40 bumbs at this point and they're all over her body. I don't want to hold her down for that procedure :( But it needs to happen.


Because I know I am asking for such last minute appointments, we may only visit the Wheelchair Clinic for the day and then spend the rest of our day together and visit the zoo or the aquarium :) We are scheduled to return for major procedures / appointments and another surgery in October, so if we miss our doctors in a few weeks, we will just catch them next time.

Later that evening, we will catch a flight from Cincinnati Ohio to Orlando Florida where we will meet daddy and Madelynne for an exciting 3-day visit with our friends in Florida.
I am so excited for Annabelle to finally get her wheelchair, it will bring her so much independence as a little girl and provide such relief from having to walk. I know she's looking forward to it and so are we :)

The summer is flying by! I wish time would slow down, don't you? I love spending the evenings by the pool with the girls. I love the long days of sunshine and cookouts. Time is moving just way too fast , and I wish it would slow down.. before we know it, the Christmas tree will be going back up !
 

Wednesday, June 29, 2016

My ABILITY is stronger than my disability

Since returning from Cincinnati, our hearts and spirits have been quite down in regards to Annabelle and her continued struggle. For years we have fought and exhausted our energy into finding better doctors, treatment plans, solutions and strategies to help her fight and conquer this battle she's been given. We have done our work, to the best of our ability, we've given Annabelle what we believe the BEST we can give her... but to learn that the disease is still out of control, we still do not have a definitive diagnosis and she is still in pain, it's exhausting and disheartening. 

As parents, we will walk to the end of the world for our children, but what happens when you do and it still doesn't save them? 
What happens when you pray so hard and so long but biopsies continue to come back worse? 
What happens when you spend every dollar you have for the top-notch hospitals, care and supplies, but she still suffers? 

If you have the answer, please share, because we're lost and broken-hearted.


All we know to do though, is enjoy life. We are striving to make life as 'normal' as possible, in the realm of our 'abnormal'. Annabelle wants to play T-ball like the rest of her friends? Well.. we bought the uniform, daddy coached, and she played T-ball. Albeit, she spends more time laying in my lap on the bleachers or sitting on the bases because her energy is too depleted to run; but she wears the uniform and she cheers with her team.




Big sissy is joining the swim team for our second year in a row - Annabelle wants to learn to swim better too.. so, Annabelle joins swim team! Is it reckless? Nah, not too much. Swimming is a great sport for her. It allows her to exercise DIFFERENT joints and muscles in her body and takes the stress and deterioration away from her hips/legs. When she tires, and she does very easily, she goes to lay on the chair under a towel and takes a nap while the rest of her team swims.

Madelynne and Annabelle love being on the same team together, not many sports share a team for all ages but swimming does. They of course compete in different heats bc of age, but our Swim Meets are the same night, their uniforms match and they cheer on one another from the side of the pool. Annabelle enjoys swimming and she's great at it. She's a fearless 4 year old, FEARLESS, so getting her in the pool and teaching technique was a breeze. It's both the Bishop Girls natural calling.

 

Annabelle about an hour after a swim, she didn't have enough energy to walk much, so she couldn't do her next 'heat' in the backstroke. We spent the evening walking around the pool instead :)


Annabelle with her nurse, 'Ms. Pat'. The two of these beautiful ladies are simply inseparable.
 


Our goals, from this point forward, are to live life as 'normal' as we can within our constraints. To allow Annabelle to enjoy life to the fullest and to continue to surround her with comfort, love, compassionate friends and celebrate our small victories.  


SCHOOL
I have to be honest, this is a hard subject and pretty much the reason why I haven't updated the blog lately.
Without going into much detail, because I do love our Elementary School that Mady has attended for two years, but were struggling with their cooperation and our needs for Annabelle. Our initial meeting with the school left our family walking away with significant fears. They were clear that our nurse staying with Annabelle during school hours was not permitted and that they wanted to conduct all their own testing to determine whether or not she warrants a nurses care while at school. Annabelle has been thru a battery of tests, all her life, and the very first thing I told them is that it is my wish is to not have to put her thru any more than necessary..... we left and were scheduled for a total of 5 different series of tests and assessments to complete between then and August 1st. We've completed two so far...



My heart sank for Annabelle. Even during preschool, if you assess her academic skills, she shuts down. She tells you "she isn't as smart as her friends, she's stupid". I hate all those words and we try to curb them - but that is her 4 yo opinion of herself. If we can avoid another person asking her to write her last name on a paper, counting by two's and listing the months of the year - all to prove she DOESN'T KNOW IT, than I will. She's hard enough on herself in school, and the series of tests they're putting on her is already putting a bad taste in her mouth about attending Kindergarten.

Medically, Annabelle absolutely, without a doubt, cannot and WILL NOT attend Kindergarten without her nurse attending with her. The schools approach was to entertain the idea of using their nurse, or bringing on another nurse to help Annabelle .... that simply isn't a logical solution. Annabelle's nurse has been with her for 3 1/2 years and knows Belle like the back of her hand; realistically, she knows Annabelle better than AK and I. We pose too many medical risks to not have our nurse Pat by Annabelle's side and as parents, we will not take that risk. This is a battle we will fight or we will not continue to pursue the public school avenue for Belle.

Wish us luck on this journey friends. This is hard and I have prayed every day that God gives me the strength, patience and insight into the Public School systems mindset that we can reach a mutual agreement on what is best for Annabelle. I am at their mercy when it comes to making academic decisions for her in the classroom (IEP / 504, etc) but when it comes to Annabelle medically, I am a pitbull in a room - I've spent almost 5 years advocating for this baby and will continue to do so the best I know how. I just pray that I am able to articulate my concerns and wishes to them in such a way they understand our families perspective and goals and we are all able to find the common goal and best plan for Annabelle.



Thursday, June 2, 2016

Hero



Have you ever met a hero?
They dress in entirely too tight clothing, sport a strong catchy name and sweep in to save helpless people. They're strong, not frail. They most certainly don't come in 48" 38lb packages with bouncing curls.


So how is it that this sweet little girl rescues me almost every day? Can a 4yr old be my hero?



The SHIELD she wears on the outside doesn't allow the world to see her brokenness on the inside. She looks tough and mighty, her veins are ridden with scar tissue but her adorable dress distracts you from seeing them. Her left eye and face is becoming more paralyzed but her precious smile covers it up. She has a SUPER CHARGED POWER PORT in her stomach that allows her to add a boost of extra power and nutrients while she's out saving the world. She's fueled with SUPERNATURAL STRENGTH that makes it impossible to keep her down. When she's supposed to be conserving her energy and preserving the health of her cells in her body, she chooses to pull of BMX Bike Stunts on her training-wheel-less bike, instead. Her PERSERVERANCE is stronger than the world expectations of her. She unexplainably defies the odds time and time again.






Have you ever met a hero? Because I think I made mine.. Annabelle is, without a doubt, my hero. She's the hero that I can't live my life without. She's the hero our community needs to remain humble.



This strong little girl wasn't supposed to make it to school age. Doctors asked us why we are even signing her up for school.. but, to our amazement, she continues to fight and graduated preschool last week. Friday she was registered for kindergarten. Annabelles nurse cried during the entire graduation ceremony, in pure love and admiration for how far she has come.. Annabelle and her nurse have a bond unlike anything I've ever seen. A more special and unique bond than I can even have with Annabelle, the two of them know one another and trust one another in such a way it's amazing.





This school year wasn't easy. Annabelle struggled most days to make it just 3hours in school, and although she still writes her name completely backwards and counts 11, 13, 18, 22, 23, 24.. She's still overcome more than her doctors and medical team ever gave her credit for. I am so proud of this little girl. A preschool graduation may be the only graduation she has, so it was very very special to us as a family to watch her so proud of herself. It was truly a hard, but wonderful evening :)





We met our principal, school nurse and kindergarten teacher last week during orientation. We also scheduled a Child Study for next Monday where we will meet with the school team, our nurse and AK & I to determine which accommodations we will need to make and have in place when she starts school in the fall. We haven't decided if we'll need an IEP, 504 or both.. I'm just now learning this acedemic / public school lingo and have a LOT more to learn.. Hopefully I get a good handle on it all next week.







Wheely-Chair Update
It's been 7weeks since we've met with OT at the Wheelchair Clinic in Cincinnati. Based on how Annabelle's overall health is going, I think we'll need to return to Cincinnati a bit sooner than we expected, preferably in August. It would be ideal to be able to pickup our wheelchair while there so I called for an update.. They broke the news that Medicaid will not participate or cover any costs for the wheelchair. We half expected this, but prayed regardless for the help. I was sent a form to sign that I acknowledge Medicaid will not be billed for the wheelchair and we will assume the remainder of any costs. I had the option to retract our order of the wheelchair and cancel it or continue and pray like high hell our other insurance will help at least some. Of course I choose to continue, but I would be lying if I said I didn't want to get sick when I saw the total cost and then cried.... The grand total for Annabelle's wheelchair, (no power, 100% manual chair), is: $7,938.91. Im not sure about the rest of you, but we most certainly do not have that money.  




Here's a quick rundown of the items on our invoice. Mind you, when you purchase a wheelchair, that's all you get, just the frame of a chair. Anything more than the frame itselt is a custom upgrade. Yes, so as you read this list, allow your eyeballs to burst out of your head and roll just like mine do at how ridiculous it is we have to UPGRADE her chair to get just the BASIC ESSENTIAL pieces that should come standard in the first place.



Wheelchair: $3,409
Footplate: $202
Spinergy Wheels: $1,061
Side Guard (to protect her hips/clothes from getting caught between the seat and the wheels): $197
Armrests: $224
Padded Calf Straps: 101
Swivel Anti-Tip Rear Wheel: $256
Posterior Back (seat back): $755
Transport Bracket: $264
Headrest Pad: $265
Seat Cushion: $432
Seat Belt: $114
Trunk Support: $99
IV Pole: $331



I don't know why the invoice left me in tears so hard, perhaps out of sheer frustration that we don't have the means to provide everything our daughter needs to keep her happy, semi-healthy and living life to the fullest - or if I was just so damn frustrated with the medical world that they rob families like ours and children like Annabelle from the necessities they NEED to survive. It's a sad, broken, corrupt medical world ... one I despise and hate being forced to live in ...



I signed the paper and faxed it back. Our chair is being ordered now and our fingers are crossed that it should arrive by August. We are hopeful that it will and we can make good use of our time while there (as we always try to do). Annabelle's body is failing fast and hard during this most recent relapse. She complains of pain a LOT, both while eating and during regular activities because her stomach is hurting so badly. She cries out in pain and is asking more and more often why she is sick and why God made her body with so many boo-boo's. She's getting older and explaining things to her is actually becoming more difficult. She doesn't settle with a simple answer any longer, she asks multiple follow-up questions and always looks for an optimistic fairy tale ending, "So when we go to Cincinnati NEXT time, they will fix the boo-boo and then I will be able to have pizza like my friends and I won't be sick anymore?" .... "no sweety....." :(


We are staying very close in touch to the team in Ohio and if things were to turn for the worse while we are here, it's understood that we will fly immediately that way where she can get the best care. For now, we are just allowing her to live life to the fullest and caring for her the best we know how.


She is our hero. Every single day she finds the energy to get out of her bed when her weakening body pleads for her to lie down. Every single day she finds a way to make our family laugh and remind us how blessed and grateful we are to have all that we do. On the worst day, a frustrating work day or traffic jam that causes everyone to run late, we struggle to give into the negativity.. life is all too short and too precious to allow anything other than joy and laughter fill our homes. Next time you're struggling, I challenge you to give a stranger a compliment, turn up the radio and sing... or if you're me, think about how much Annabelle has overcome just to be here today.. smiling.. laughing.. running and playing. When the world wants to drag her down, she laughs and skips the other way. Find the joy in everything, I promise - it surrounds you. You just have to look for it. I found mine.... she's asleep right down the hall...



Thursday, May 12, 2016

Smiling thru the tears


I've drafted about 5 different blog posts. I have posts that were drafted while we were still in Ohio and then another that I wrote on our drive home. But I cringe with every word I have to write. I want to share how the rest of our week went after the procedure, but the truth is that it was awful. I am so, SO tired of updating here just to share with you that we aren't doing well. I hate it!


Above anything, I don't want to share the post that I am about to share. It's updates like these that rob our family from the lies that 'were living happily ever after' (what a tricky lie we tell ourselves, to enjoy the moment). We wear a smile until the truth is revealed and all that happiness is stolen from us because of this awful frickin disease! I hate it, I hate it, I HATE IT!


The skinny on our update is that the rest of our trip in Ohio took a traumatic downhill turn by Wednesday morning (2am to be exact). Annabelle began showing signs of bacterial traechitis which landed us in the Emergency Room. This was a result from the surgery and the anesthesia team changing our anesthesia plan mid-surgery without mine or AKs consent. They performed a new procedure on Annabelle that we never would have approved and the result was the irritation and damaging of her trachea. Those wounds were then exposed to bacteria that resulted in an infection that her body struggled to fight.


By Thursday, we were able to perform the Sleep Study. Annabelle did wonderful while being hooked up but she hated the nasal cannula. Once that was placed and taped securely to her face, she was able to cry herself to sleep. She wanted that thing gone more than anything and we couldn't help, we couldn't hold her because of all the tubes and wires she was connected to. We couldn't lay in the bed with her because of the monitors. She had to be left alone, still and immobile to sleep the night by herself. She was still trying to recover from traechitis, coughing, gasping and moaning. God she was just a mess. It was a hard night for all of us, AK nor myself slept at all that night.







Friday was the day we ordered her wheelchair. This process wasn't as painful as we expected it to be once we got in the room. The OT and Vendor quickly led us thru the process of selecting the right chair for Annabelle. Our requirements were:
  • Lightweight enough that Annabelle can push it alone
  • Frame can adapt to add power options to the chair later, if we need
  • Collapsible so we can transport it in our current vehicles
  • Sized appropriately for Belle now and will also last us 5 years (insurance will only allow 1 wheelchair every 5 years, so it has to fit her hiney now all the way until she's 10yr old!)
  • Versatile so we can personalize it to our needs
What we landed on was a chair called a Ti-Lite, Twist. Annabelle choose a purple frame and hot pink seat. http://www.tilite.com/chairs_twist.php






Once we choose the wheelchair itself, then came time to customize everything that Annabelle needed for it to serve her.
  • Transport brackets to allow Annabelle to be transported in the chair (school bus, metro, etc)
  • High back seat cushion. This is necessary when transporting and will also provide more comfort for when she needs to rest.
  • Hip protectors. To prevent her clothing, fingers etc from falling into the wheels right beside her hips (This is about the moment I began asking why the hell do chairs NOT come with most of these things?!)
  • IV Pole. To hang her feeding tubes, pumps, bags and fluids.
  • Removable, washing seat cushions. Having a child with a GI disease = lots of messes. Why wheelchairs don't come with removal seat cushions and washable inserts, is beyond me.
All these things were upgrades to the standard chair. Our #1 upgrade that we did opt to do were Annabelle's wheels. We bought our baby 22's!! haha ;) The wheels we upgraded were significantly lighter which allows the chair to become much lighter to push for Annabelle (and us) and also to lift to put in a vehicle. Since we upgraded to the low-profile, lightweight wheels, we were also able to angle them on the chair to allow Belle to be much more comfortable when resting her arms beside her when pushing the chair. You wouldn't believe the world of a difference this made for her. I am so happy about this upgrade (but holy crap, the cost was painful).

We choose NOT to add power to the chair at this time. Honestly, it's just so expensive and we can't afford it. The wheels that deliver the power were too heavy for us to lift (well me, really. It made the chair almost 100 pounds!) and, it was a bit too tricky for Annabelle to use. We also didn't like the way it forced her to position herself and her arms in the chair to use it. At a price tag of additional $7,500, we couldn't do it.

This wheelchair, while it was painful to accept, build, order and purchase; I know will provide our little girl with more independence and the cause for so many smiles to come. She will be able to keep up with her friends, play and laugh along side everyone again. As a parent, I look forward to not carrying her everywhere we go, I look forward to knowing that if she wants to play and run for a minute, that when she crashes and cannot stand that she will have her chair beside her to help keep going. As her mommy, my heart SHATTERS that my 4 year old is going in a wheelchair, but it BURSTS that our medical team was wiser than I and made this decision on behalf of our family. I know we will love it and own it, just like we do our adjusted lifestyle and feeding tubes. It will quickly become part of us . . . . the road is just a bit wee bit intimidating.



So that was the short summary of our week, except our GI Follow-up...


:sips wine:


:gulps wine:


I knew it would be bad when Dr. Putnam ignored my very first question to him: "How do the biopsies look?" He response was, "She doesn't have any active disease in her colon.. but we need to talk about it. Her colon is extremely dilated and damaged.."




AK and I anticipated this, as in her lower GI, being a large part of our conversation during this visit. We listened with open ears, but a pounding heart.



What we're dealing with is something called, "Involuntary Encopresis with Chronic Constipation". Basically, her damaged body doesn't know when to pass stool, so it holds onto it and as the stool builds up, it stretches her colon. By the time she is so 'backed up', the stool is entirely too large for her to pass on its own. In between the times she has a BM, some loose stool/fluid will leak around the impaction.. resulting in leaking stool, constantly (very frustrating for us all).



We don't have a lot of options with how to address this new diagnosis. But we choose to give it our all and attempt to repair the damage done to her colon, without having to remove it. AK and I are committed to working our asses off at home for our daughter, in an effort to avoid more loss of her poor little bodies function. Our homework is to clean out her GI system, FULLY, every 24 hours. It's been years since we've attempted to do this at home, but over the last month, with the help of a LOT of drugs, we've actually been quite successful. We are disappointed to have her back on medications, but I am relieved to see they're working and Annabelle is able to get a bit of relief. 



The downside is that it takes 6 months to repair the amount of damage Annabelle's body has done to her colon. If we fall off the bandwagon and something happens to where she doesn't fully empty her colon every day, the clock restarts for another 6 months. Unfortunately, we've been given only 6 months to make substantial progress before her medical team moves to next steps of intervention.

When we return to Ohio, we will follow-up with the Neurogastroenterology and Motility Disorders Clinic where they will help us navigate our next steps in treating this newest diagnosis. Our goal is to be able to alleviate how dilated her colon already is by emptying her GI daily, and then when we meet our new doctor and based on the surgical report, we will be able to repair the damage that is already done by performing Botox Treatments to the damaged areas. That is our stretch goal, rainbows in the sunshine, perfect happy ending, goal. If we fall short anywhere below that, we are looking at removing Annabelle's dying lower GI system, just like we did to her upper GI, 2 years ago.


Then, we got on the subject that makes me nauseous to even reflect on.

:finishes bottle of wine:

Dr. Putnam: "I am really sorry. But the biopsies did show eosinophils in her esophagus and the active disease has returned."

Those are some of the hardest words to ever hear.

.. this means our mission for finding Annabelle's diagnosis has just ended. It means we cannot keep searching, testing, meeting with doctors and narrowing down our search window. We get skewed and pointless results if Annabelle has relapsed, and that's where we are..

.. this means we've lost control of her disease once again. For 10 solid, fun-filled, happy months, Annabelle was free from this disease, and now it's back. We have absolutely no idea why it's back or what has set it off. And honestly, it doesn't matter anymore.. it's back..

.. this means a clock starts ticking again. A bashing loud, haunting you from your dreams, robbing you of laughter, fogging your wishes for your baby, awful fucking clock is ticking..

.. it means we stop, refocus, reflect and live for right now.

That's what those words mean to our family. We left Cincinnati, Ohio with no treatment plan or advice from our medical team. We came home to a quiet home, surrounded by loved ones that were happy to see us home but blind at the news we had just received. We came home to continue to live life the best way we know how.

It's been a month and we are still adjusting. Last week we took the girls rootin' / 4-wheeling in the mud. The somber depressing rain was drowning our smiles that were already hard enough to find, so we decided to make fun in a horrible situation. We took the 4-wheeler out and played. The look on the girls faces when mommy and daddy began having a mud fight, was priceless. We were all filthy, but we had such a wonderful time.



I've called the school to begin the process to get Annabelle registered for Kindergarten.  Honestly, Annabelle hasn't even made it to preschool much in the last month since we've been home. She's made it to school about once or twice x week but doesn't seem to have the energy to attend much more than that. In the grand scheme, she doesn't need to go but she wants to ride the bus and be like her friends.. so darnit, she's going.


She sleeps late in the mornings and tires very quickly. Her mood is shifting a lot too, she's angry and frustrated with us nearly all the time, her patience is so thin which tells me she is uncomfortable and in pain. She cries almost every single day that she hurts, and I just can't imagine what she must be physically enduring. Her tiny body is failing her and rotting from the inside out, and all we can do is give her a hug and remind her how much we love her and how strong she is.


I don't have any inspirational words, I don't have a happy ending to close this blog post and I don't have any promises to anyone. But I do have a prayer.


My prayer is that you love one another. That you see the best in one another, even if that means you have to dig down deep to find it. My prayer is that you don't spend your lives in frustration, guilt or anger but that you spend it building and loving the ones around you.
My prayer is that you consciously seek to find the beauty in all situations and not take a single day for granted with those that you love.
Sit down, listen to the children around you, have a conversation with your grandparent and hear what they have to say, be still in the chaos and appreciate how alive the world is around you.
In the blink of an eye, your life can ground you so quickly that it makes you physically ill, every minute you live without smiling and appreciative in this life, is a minute you won't get back.
Hold your babies when you're together.
Walk away when you want to scream, but run back for a hug and kiss when you're collected.
Watch them sleep with their eyes closed and their chest rising and falling.
Feel their warm skin and drown yourself in their giggles.
Remind them you love them, every single day.
Pray for them, with them and to them.
And as a friend, my prayer is that you will always support one another even during battles that you don't understand. That you will allow yourself to be selfless in your friends needs and love without judgment.
Above all, laugh, enjoy the company around you, cherish your blessings and know that in the end, you led a life with no regrets, you loved without holding back, you respected yourself and family enough to fight for it and you're grateful for all you have.

















Wednesday, April 13, 2016

Upper and Lower Endoscopy, biopsies and 23rd round of anesthesia




Honestly, considering where we started and how far we've come, I cannot complain about an ounce on how Annabelle is doing on this trip. She's handled painful procedures like a pro, the hospital has been very keen on addressing any anxieties she has and allowing us to make a lot of decisions for her. All things considered, things have run pretty smooth.
(For the record, I LOVE this kinda blog update :) )

Since our OR time wasn't scheduled until 1:55p, we spent most the morning being lazy, painting, doing arts and crafts, watching movies (we watched Matilda, because I got to pick the movie this time hehe).









The doctors and GI team made their rounds at 9am and we joined them for Annabelle's briefing on her case. I love how they do this. All the doctors on the floor, research team, specialists, and our nurse stand in the hallway outside of our room with their computers and we join in a circle. Our nurse then briefs the team on why we are here and how Annabelle is doing. The main doctor explains to the team what our plans are for Annabelle while she's on the floor and during surgery. They ask if we have any follow up questions or concerns and then they wrap up our case.

(Here's a random internet picture of what this looks like)

It's all open, we are intimately part of every detail of Annabelle's care, just the way it should be. After were finished, we go back into our room and shut our door for them to move onto the next patient. 


The OR called for us shortly after 1p and transportation rolled us to pre-op. Annabelle began to get scared for the first time, she was breathing terribly heavy and had silent tears falling from her eyes. 

"What's wrong sweetly?"
"I'm scared mommy, I don't want surgery anymore. I just want to go to our hotel, please."

She has been so brave until this point. And she still was, but she was nervous. Our room was no longer decorated beautifully with a Disney movie on the TV, instead, we were now in a holding cell with lots of monitors, beeping machines and teams of doctors, anesthesia and research specialists talking to us and surrounding Annabelle's bed. She had every right to be intimidated. We both gave her our cell phones, she played games, took selfies and even snapped pictures of mommy and daddy lol (excuse us, we look like hell)


Finally, Dr. Putnam made his way to see us, this was a relief to Annabelle, she loves Dr. Putnam and was so happy to see him. We quickly discussed our game plan and he noted that we were next in line for the OR and he would see us soon. 



We moved into the OR where about 15 people were standing around and waiting to begin. I feel like such a fish out of water when we go in here.. they're all staring and watching us silently as they work to organize their last things. I eye each and every one of them, trying to smile, but in my mind screaming "keep my baby safe. keep her alive. Take care of my baby. You. And you. And you. And you.." I can't help it, each and every one of them are accountable for my daughter from the time I am escorted out of that room. I don't know what their roles are in the OR, nor do I care, but my expectation is that they all keep her safe. each and every one of them. 

The anesthesia team (initially) followed my request to repeat the same procedure as we did last time for keeping her comfortable and asleep. They administered Versed and within 20-30 seconds, she was drunk.. Just the way I like to see :) this relaxes her so she isn't as anxious when they put her under and she wakes easier without panic. Next they gave her Propofol which usually does the trick without needing the gas to knock her out. Anytime I see Propofol though, I have flashbacks to when we attempted to use it for an EEG and she fought it with every dosage until it was too dangerous to continue so the anesthesia team ended the test bc she wasn't responding appropriately. It was terrifying and I wish I never witnessed it, it's scarred me. She wasn't even 2 yet and was so, so sick ...


This time though, when they gave her propofol, I watched and her eyes bolted open in a panic just like they did three years ago and my heart stopped. I didn't want her to fight or be scared, I immediately crouched down next to her and told her we were going to take a nap together, and she laid her head back down. I told her I love her so much and sweet dreams, she gave a half smile and closed her eyes. That's when the anesthesiologist put the gas mask over her face and we were escorted out. 

This video shows right after she had versed and when they administered Propofol, I cut it off when I noticed they were giving the Propofol and she was trying to sit up.. 



We made our way to the waiting room and found our usual seats, right in front of the monitor that relays how Annabelle is progressing thru the OR. This was AKs first time being inside the OR when they put her under, we talked about it for a bit.. He didn't like what he saw, as a daddy, there are just a lot of parts of this medical process with Annabelle that he would prefer he never sees or knows about. The OR is intimidating, without a doubt, for parents as much as it is for the kids. I'm just grateful Annabelle has us both to balance the emotions of what she's going thru. I am much more medically aware and engaged, a fighting advocate for each and every decision and daddy is her hero that brings a bit of home to the hospital and makes her laugh and forget everything she's going thru. We wear two very different hats in how we provide her medical care and how we parent our kiddos, and I couldn't ask for a better co-pilot on this adventure.
....enough of that sappy stuff..

About 45m later, we were called for a consultation, where they take you into this tiny room between the OR and waiting room and our nurse (Eosinophilic Esophaghitis specialist/ Putnams right hand man, err, lady) briefs you on what went on, updates her notes from us and we wait in silence until Putnam joins with pictures and an update on what he saw visually. She looks good from a visual standpoint, we need to wait for biopsies and he stressed that we need to have some conversations during our clinic visit on Thursday. We agreed, took our paperwork and went back to the waiting room where we wait until she's stable in the PACU and they call us to go see her. 

.. .. .. Almost an hour later, I was covered in hives and wanted to vomit from nerves. She has never ever taken this long to wake up and them call us. Every worst case scenario was running thru my head and I just knew she was screaming hysterically in disoriented fear and I wasn't there (that's how she comes out of anesthesia 80% of the time). I demanded the rep at the front desk let me see her and/or speak to the nurse that's back there with her. I couldn't take it any longer. The nurse on the phone said to send us back, I bolted to the PACU, leaving AK in my dust. When I found her, she was still snoozing away, still had a breathing tube and on oxygen, she just didn't want to wake up yet. After about 5min she wiggled a bit so the nurse removed her tubes and set the oxygen to the side as we watched her for another 30min. She seemed to be slowly, very slowly, coming out of it.. But she was scaring the hell out of me. I couldn't touch her, hold her and I can hardly speak to her bc it's essential she wakes on her own and doesn't panic when her body can't wake as quickly as she wants to. We swallowed over our lack of patience and anxiety and watched our baby snooze... For what felt like a year! Finally, they called transportation and allowed her to finish coming out of anesthesia in our own room on the floor. I was relieved, at least if we're leaving PACU, that's a good sign.. 

When we got back to our room, daddy picked Annabelle from her stretcher and carried her back to her bed where we made her comfortable again. This little bit of movement did wake her a little more and soon she was opening her eyes for us. We both exhaled, loudly and smiled at one another. Whew, she's back! 


I've mentioned it before, but anesthesia is one of my biggest fears, for myself, for my husband, for my babies. It isn't often people are put under, but in Annabelle's case, it is often. This was #23, and although I wish it wasn't in the back of my mind, I always think and say "how many times will we be lucky for everything to run smoothly? This may be the last time I see my baby awake and smiling at me, this may be the last time I hear her sweet little voice." Anesthesia is dangerous, there's no doubt about it and all our doctors remind us. We have to get to a point where she isn't going under all the time bc eventually there WILL be consequences to the repeated bouts of anesthesia.. I just wish we were already there. :( 

We were discharged around 530-6pm, just in time to play in downtown Cincinnati traffic during a rainstorm. Annabelle was too tired to notice how long we were in the car.. She was still so groggy, which was probably a good thing. We arrived at Great Wolf Lodge around 7p and revealed her big surprise :) she was pleased, but couldn't grasp the amount of fun these few days would bring. The last time we bright Annabelle to Great Wolf, she was so sick and weak, we thought we were losing her.. Hospice was called a month later. She doesn't remember that trip at all, she never really got in the water, she just cried occasionally and slept 90% of the time. Here are some pics from that trip:





Mady remembers the trip though and remembers how much fun it was.. When she finds out where we took Annabelle, she's going to be FURIOUS! Lol

We didn't do anything fun open arrival, we had dinner where Annabelle couldn't eat much and then sat for story time, but she asked to leave within 5 min of the story beginning because she wanted to go to bed. 

Tuesday she did play for a bit, but she is still incredibly weak. I can't gauge whether it's all because she couldn't eat for two days and then underwent another surgery or if she's tired because of all the running and swimming thru the water park. Nonetheless, she could only play for about an hour and a half and then couldn't walk or run much any longer and needed rest and some sleep. Her cough is getting pretty out of hand too so we're keeping a close eye on that.

No appointments Tuesday. Wednesday we report at a satellite location for a sleep study.. and based on how much we are wearing Annabelle out playing, I don't foresee any issues sleeping on the only night she DOESN'T need to sleep like a log. lol 


















Sunday, April 10, 2016

Divide and conquer VA to Ohio

Yesterday was nothing less than exhausting for the Bishop home. We had opening day at the baseball field, tball pictures, tball game, soccer pictures and a soccer game. All the while it decided to snow in VA making the day miserable for all of us outside all day. Between our games and pictures, we managed to finish packing the bags and our car so we could hit the road as soon as Annabelle's first tball game was over! 



I rode in the backseat with belle for the first couple hours, we watched The Sandlot and ate snacks while daddy drove. She asked often why we HAD to go to Cincinnati and we answered her honestly. She wasn't confused on this trip, shes remembering our hospital visits much better each and every visit, but she still has anxiety about them. Her biggest fear are getting pokes. She pleaded for us to not have to make her get any pokes, or perhaps for us to ask the doctor for some sleepy medicine so she could go to sleep while they do the pokes (how clever! That sure would be nice, heck I would sign up for that myself!)



Annabelle fell asleep in the car around 9p and by 1030p we decided it wasn't safe to drive much longer. The temperatures were below freezing and we were driving in and out of snow storms as we wrapped around the mountains of West Virginia and Kentucky. We were both exhausted so we stopped shortly past Charleston, WV to get some sleep. 


We got back on the road by 7a and were Cincinnati bound. Annabelle continued to ask and negotiate about going to the hospital, and we continued to answer her questions honestly but provide excitement about the trip, "we also get to pick out your wheely chair while we're here this time! AND mommy and daddy have a big surprise for you after your surgery tomorrow!" She was pleased, but still so anxious and disappointed. Watching a broken 4 year old process the fact she's being forced to a hospital for painful procedures is something a parent should never watch across their child's face. It kills me...... I always have to look away..... There's nothing I can do about it either...


We arrived at the hospital on time and were admitted quickly. Our room was personalized for Annabelle and we met so many familiar faces on the GI Surgical Floor. It's like we're 'home' again. 



Before we knew it, it was time for the dreaded poke. Everything leading up to it ignites her anxiety.. Getting undressed, taking off her own clothes, putting on a gown, sitting in the hospital bed, child life and all their distractions - every level of detail is another element that brings her closer to that needle and she knew it. 



I asked for an IV team to help with the stick. Not because we didn't trust our nurse, but because Annabelle's arms are building so much scar tissue that were having to stick her 2-3x each time we attempt labs or an IV. If I can subside just an ounce of her anxiety and fears from the pokes, I will take it. They brought in the queen of IVs and she is accompanied by her ultrasound machine that helps her place the IV. It was super cool. They scrubbed Annabelle's arm, and while child life distracted her with pictures and stickers, the nurses watched her veins on ultrasound and incognito made the stick. The moment Annabelle moaned ouch, we pointed her attention to the ultrasound machine and she smiled Bc she could see what was happening. 



She didn't have one tear. Not a drop. She didn't cry or once complain. In fact, when the nurses left, she told us it was the best day EVER Bc it was the first time the poke didn't hurt! I could kiss the IV nurse for what she did for Annabelle. Relieving her from this stress and anxiety was every bit of my prayer for today and she made it happen. 

Once the IV was placed, it was time to begin running the meds to flush her GI system. Unfortunately though, the nurses couldn't get their feeding pumps to work. We tried using our own extension sets (tubing) and finally after two hours and them trying all her equipment and supplies, I offered for us to just use our own equipment and supply. They agreed. (I really feel like I should be getting a credit on our bill for this) 


The evening has been smooth. Annabelle made a trip to the playroom to paint a few pictures, we did a puzzle, the second was a different puzzle than the box it came in and frustrated the ever-living out of her so we gave up ;) we watched Inside Out a few times and before we knew it bedtime was here. 

At present, we've had two blowouts equivalent to that of an atomic explosion. I look forward to the rest of the night following suit.. If she continues to move stool at this rate, fingers crossed that we won't spend the entire night doing painful rectal irrigations. 


Sweet dreams world