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...