The holidays are over and Annabelle's heath problems gave us no time before throwing us right back into reality.
- Final reports arrived in the mail
- Strep throat
- Battling weight
- Scheduling next visits
Christmas Eve I received the Neuropsychological Report from Cincinnati Children's.. we wanted to enjoy Christmas so I pushed the envelope to the side. Once the girls were asleep, I opened the report.
Christmas night I sat in my bed with the heaviest heart. AK watched the sorrow stream across my face and he poured me a glass of wine and ran a hot bath. I flipped page after page of the report, speechless - sometimes chuckling at their findings "Annabelle was somewhat competitive, regardless of what the activity was, comparing what we were doing." but then my heard shattered at other statements. Paragraph after paragraph, page after page I read a medical report that detailed all the neurological concerns that physicians have about my daughter. They evaluated her on Intelligence, Academic Skills, Verbal / Language, Visual Perception / Construction, Attention, Fine Motor and finally Emotional / Behavior / Adaptive. In some areas she did ok, such as Verbal / Language and Intelligence - but the gut ripping ones, she scored Considerably Low / Low Average / Borderline Impaired.
Findings of the Evaluation
- Annabelle has significant emotional adjustment issues, most likely related to impact of medical issues on day to day life. She shows signs of both clinical depression and anxiety.
- She is showing signs of chronic sleep deprivation, which is likely exacerbating her attention and mood difficulties.
- Confirmation of diagnosis of Attention-Deficit/Hyperactivity Disorder - combined type.
Every day we recognize Annabelle's medical issues. They are so blunt in our home, our lifestyles, our bank account, out routines and even our love. There is no secret this child is fighting a bigger battle than most. On the surface she wears scars of medical procedures that we hide with adorable clothing. In our home we lock the medical closet of all her medical supply (partially because it's dangerous, also because we don't want to look at it constantly). But deep down, our parental focus is on her little 4 year old heart. When the world judges our baby from the outside, we loose sleep over what is happening on the inside. We fight every single battle in front of us to determine what is happening to her body. For years we have shuttled her from one hospital to another doctor to another state and back, all to find answers for Annabelle. We have come so far and are finally making huge strides... and then it hits you - while we were learning so much about her little body, we overlooked how this is destroying her mentally and emotionally.
My baby girl is clinically depressed.
Let that sink in.. think about your son or daughter, 4 years old, full of life and no worry beside whether or not you cut the crust off their sandwich or if they see their favorite toys in Target and you won't buy it. They verbally beg you for a tickle fight before bed and wake you in the morning for cartoons and cereal.
Now imagine a doctor just told you, "Because of everything Annabelle has experienced and been subjected to medically (aka, all the appointments I've scheduled and taken her to, all the needle sticks I've held her down for, all the procedures she has PLEADED I not make her go thru), because of all that - what is supposed to be your wide-eyed full of life baby girl, is Clinically Depressed and suffers from intense anxiety (ie: 5 screaming, dry-heaving meltdowns between Richmond and Cincinnati on our last trip.. meltdowns that finally turned into submission where she just didn't care and wouldn't speak as we carried her into the hospital for them to begin IVs within the hour we walk into the hospital and perform tests).
We fight to repair damage that is being done from her disease and march to the top of the mountain for answers, all the while we are destroying our daughter and stripping her from the happiness she is supposed to experience as a little girl.
I write this though as if we are intentionally hurting her. I do know, realistically, that we are only doing the best we can for Annabelle. Our hands are tied and if we want to save our child, we MUST fight this fight. But the parental guilt that we feel from all the repercussions of our pursuit for an answer, is hard. It's heavy, ugly and painful to recognize what you are doing to your baby. It's infuriating that this is happening to her! It's infuriating that we have been put in this position! It's absolutely, nauseating, to read the truthful and honest words written from a team of doctors about our child.
It has taken me two weeks before I read the words over again. I threw the report to the side and didn't want to acknowledge it. "They're full of sh!t to tell me my child has ADHD, suffers from depression, anxiety and is borderline impaired on how she emotionally handles things." ...
Now let's jump ahead a few weeks:
I took Annabelle to Madelynne's school today to surprise Mady for a lunch date. We stopped and ordered Chick-Fil-A and then waited in the hallway at school for Mady's class to walk towards the cafeteria.
We sat down at the table and all began to talk. The cafeteria filled with more and more classes and soon, every table was full of kids talking, laughing and playing. Annabelle wouldn't eat (our next topic, later). Her eyes were huge as she snapped her head back and forth. Within 15 minutes, she was covering her ears, humming and crying with tears pouring off her face, "It's too loud mommy! There are too many friends in here!" (I told Belle we would be going to sissy's school to see all her friends). We had to pack up and leave. She absolutely couldn't handle all the noise and chaos of a lunch room cafeteria.
I believe a lot is going on when it comes to how Annabelle handles life circumstances. I do believe sleep contributes to her emotional behavior, as well as many other things. I know she has been subjected to some of the most painful medical procedures and watched loving people hold her down for them, the trauma in that itself is enough to cause emotional damage. We trust Cincinnati Children's Hospital though and we pray they recognize Annabelle's struggle and that they are putting in place the best plan of care to help her thru this.
Many, many other things were mentioned in the report. They provided us with multiple resources that AK and I can use to help Annabelle and our family adapt. Next month, I will sit down with the team and we will revisit this report yet again, discuss their findings and outline how we will help Belle. I don't even want to think about it until then. My mommy heart is too broken.
SICK
Christmas was tricky for the entire family. Everyone was either snotty, coughing, feverish etc. I guess that's what happens when it's 80 degrees & July in December! The week after Christmas, Annabelle continued to decline to the point I just knew she wouldn't be getting any better on her own. We spent our New Years in Patient First. She had strep so we began antibiotics - 4 days later her fever FINALLY broke and she seemed to turn the corner. For nearly two weeks though Belle has laid on the couch or our bed, sipped her cup and refused to eat anything. If she gets up to play or run, she finds herself in such a terrible coughing fit that requires us to vent her stomach via gtube and then she crashes. Hard. And sleeps for hours all over again. She's been miserable but I am happy to report she's back to her usual, raising hell and playing Shopkins with her sissy.
LOSING WEIGHT
Over the holidays, Annabelle's attitude and behavior has shifted to the point she fights everything in front of her. From using manners, using the potty, all the way to eating. Yes, despite all her curve balls, she now refuses to eat. We have prepared every meal we can possibly prepare. I have bribed her past the point I am proud to admit, still she refuses to eat. Today I was told "I don't like chicken anymore and never did!". Um, ok? not eating is probably a short battle that every parent faces at one point or another.. But for Annabelle, not eating or meeting her caloric needs = health spiraling out of control, seizures, impaction, etc etc etc. There are mountains of concerns when it comes to Annabelle and how intricately we balance her diet.. defiance is not really factored in.
Therefore, after a month of pleading with a 4yr old - we are back to tube feelings. She is being tube fed for about 95% of her daily nutrition at this point. She's ok with it, unfortunately. We are still encouraging her to eat on her own but right now, we are playing with fire to leave her responsible to eat enough.
Back to Cincinnati!
We have our next appointments on the books. We are scheduled for 5 appointments, February 8th & 9th.
- Neuro-Psychology followup
- Neuro-Muscular
- Physical Rehab
- Gastroenterology
- Sleep Apnea Clinic
Annabelle and I are flying alone and have already purchased our flight tickets. I am not looking forward to this trip, it will be incredibly fast, overwhelming and a FLOOD of information for both Annabelle and I to navigate alone. But it will be quick. We will fly Monday morning, have two appointments that afternoon. Hotel for one night, three appointments Tuesday and fly home late that evening. Then we get to return to work and school Wednesday. I am already exhausted ;) The benefit though is that we don't miss too much time from having to travel and we save a ton on hotel costs etc. Our flights were only $181 each! I was so happy to score such a great deal, it makes the trip a little easier to accept. lol.
We want to thank you all for your continued prayers for our little girl. Thank you for your love, generosity, thoughts, well wishes and commitment to following Annabelle as she fights for Answers. Thank you so very much. Our family is blessed to have you part of ours, we are blessed to be surrounded by so many loving people who enjoy seeing Annabelle laugh, learn and grow just as much as we do. Thank you, with all my heart. We wouldn't be here and Annabelle couldn't have made it this far if it weren't for your prayers. We are forever grateful for you. Thank you.
xoxo
