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 !