She deserves a life free of pain!

A week away from more appointments, which we pray leads to more answers and much more help for Annabelle. The coordination for these appointments have been exhausting, but I am grateful they're coming together. Each and every one of them are essential to finding answers for Annabelle.

Next week lineup includes 5 appointments:

• Neuromuscular - we will discuss Annabelle's fatigue and weak muscle tone. Annabelle struggles to run or play like other kids her age. She tires so easily and finds herself in more pain than she can manage by just spending an hour trying to play with her friends. Her legs and hips are extremely weak, she says "they're sleepy".. Her finger grasp is weak among other things that doctors have noticed (thus our referral to see Neuromuscular). The main reason for the visit is pain. We have visited many doctors over the years that have struggled to understand the root cause of Annabelle's chronic pain. We have trialed drugs and therapy's with no luck. The persistent pain prevents Belle from getting rest, which then leaves her exhausted and sleep deprived. It's a vicious cycle that we pray we find a doctor to understand.  

• Rehab - This appointment will correlate with Neuromuscular's. We'll visit rehab to discuss her physical limitations, exhaustion, fatigue and pain. Beyond the neuromuscular side, I am hoping we will discuss strategies to improve her strength and mobility.

• GI - Annabelle's lower GI is getting worse day by day. Her BMs are excruciating with no consistency that I can notate for the doctors. She has either watery stools that she cannot hold or hard, large stool that she cannot pass. We're giving enemas, medication and supplements that are not helping. She complains DAILY about her tummy hurting. Annabelle's crying in pain isn't new to us or her, she has suffered in pain all her life, but the older she gets the harder it's becoming to hear her cries. She is so specific to how she feels and what's happening, hearing her tell me there are pokes in her stomach and sharp chips stuck in her throat (difficulty/pain swallowing) is hard to hear. I always thought that by now, I would have been able to at LEAST find pain relief for my baby. I haven't found answers and she still suffers. We feel every.single.day of this disease and not a day gets easier.

• Sleep Clinic - I'm looking forward to this visit the most. Annabelle' sleep deprivation has caught the attention of multiple doctors. Her lack of sleep and rest has an impact on her entire body's ability to function properly.. including ADHD, pain, GI function, neurological function, motility, strength and energy etc. The Sleep Clinic will assess Annabelle and help us determine which tests we need to perform, whether that be a sleep study or additional procedures. Just last night alone, Annabelle was awake at 11pm, 2am and 5am. She woke for the day at 645am and laid in my bed with little color or energy to even speak. She doesn't rest or sleep well at night. But she falls asleep during passive activities during school and prefers to nap while her friends play during recess. Anything but a normal 4 year old.

• Neuropsychological Evaluation (follow-up) - This is the follow-up appointment that I had to cancel in December. I'm grateful they allowed us to reschedule. The Neuro-psych Eval took all day to complete as Annabelle worked with some of the most highly skilled Psychologists and Psychiatrists. The final report confirmed a diagnosis of ADHD and chronic anxiety and depression. My heart still aches hearing and saying those words. I plan to bring a notebook and fill every page of notes as I meet with this team again to discuss my baby girl and ways to help her cope with all her life's challenges. I knew it all along, but it hurts to hear from a doctor that my baby is clinically depressed and suffers from anxiety. The ADHD is a battle we will learn to adjust and work into our lives, but her suffering little heart and soul that is being defeated by this disease - that's something I just cant bear.

We have kept ourselves busy the last couple weeks. Between the snow storms and getting settled back into school, the girls have stayed busy and making memories. Our church is participating in a food drive that collects a specific list of foods, bagged together and will be distributed to children. It will feed them for an entire weekend! Despite our families struggles, we try to inform our girls of less fortunate people in the world than us. We may not have everything and Annabelle may be very sick, but each family has a struggle all on its own, and some kids don't have any food to eat! The girls were very excited to participate and help shop for the food and snacks, and then one by one, they filled their own bags for the kids, tied them in a knot and pleaded to take them to the church right away. While daddy got dinner started, I drove the girls to our church, Atlee Community, and we dropped off our donations. It was a proud moment to watch them carry their bags with pride to help another child in need.

On the other side of things, we have worked very hard at encouraging Annabelle to eat more. Her appetite is slowing improving, but her little body is not catching up. Her energy is still too low, her endurance is pathetic and her pains are increasing.

Her favorite past times are becoming less "dance and have tickle fights" and more "mommy can we snuggle in your bed?" We do a lot of snuggling. Annabelle and daddy do a lot of snuggling and watching TV. Last night for example, the girls grandma came to visit - Annabelle disappeared constantly to go back upstairs to lay down. She pulls herself away from people when she hurts the most. I was finally able to encourage her to come downstairs and dance the song with us, but she only came down and sat in the middle of the floor to watch the other kids. As soon as the song was over, she went back upstairs to lay in my bed.




I know our days to finding answers and helping my baby are getting closer, I do believe that with every step, we are making strides in the right direction. But I don't understand or have patience for the suffering that my baby endures in the meantime. That is the part we struggle to understand. Annabelle is a warrior, she is so strong, loving and tough - but darnit she shouldn't have to be. I am tired of whispering in her ear "be strong sweety" while a nurse begins another IV and we all pray she can work around the mounds of scar tissue in her arms. I am defeated by the amount of times Annabelle tells me "I don't want to hurt anymore mommy, I don't want to have boo-boo's in my body." I am weak in the words that console Mady's fears, "Mommy, why is sissy so sick and not getting better?"


The road for answers is so much longer than I thought it would be. I knew it would be bumpy with twists and turns, but I didn't know it would be such a gruesome march, with more set-backs than leaps forward. I didn't know it would hurt and tire us down to the point we can no longer think clearly. I do know though, that Annabelle is still and has always been worth the fight. I do know God has blessed our family with prayer warriors and more friends that have become family in our fight for answers, and we are forever humble and grateful for them. I do know that Annabelle has touched the lives of more people in her 4 years than I ever could. We are blessed and thank God every day for those blessings. But we are also so very tired and praying for our answers and relief for Belle soon. Our entire family deserves a chance to exhale and enjoy life without living on the edge of worst-case-scenario's. Our family deserves a vacation that doesn't consist of fun outings between trips back to the hospital in Cincinnati. Annabelle deserves to be able to run, laugh and play like every other kid her age. She deserves to live a life free of pain. And damnit, she deserves a cupcake to celebrate it!