What a trooper!

This kid just doesn’t know how to stay down, even on her worst days. She has been a trooper all week since our ER visit Sunday. This morning was the most difficult day for Annabelle, she seemed to be the most verbal when waking up, crying and repeating over and over ‘Tubey hurts – tubey hurts – tubey hurts mommy!!!!” I think it’s a combination of both being sore (the bruising is starting to appear on the skins surface) and also granulation tissue that is growing larger and more irritable. I put medicine on the gtube site and that seemed to bring her a bit of comfort. I'm certain she will be feeling better very soon.

Our Gastrointestinal doctor called – she has concerns about the amount of coughing Annabelle is still doing, and I shared my continued concerns about her lack of appetite. We are not reaching ½ the diet requirements we were instructed to follow. I can’t make the child put food in her mouth. We are offering a massive variety of foods for her to eat, but even that is becoming SUCH an EoE threat. We cannot continue opening her diet only to appease the nutritionist calorie instructions… right now she is eating most all fruits, veggies, white bread and white pasta. Of course there are a couple things in there that we do eliminate because of known allergies such as all soy, grains, wheat, rice, potatoes, sweet potatoes, etc. Absolutely no protein, citric acid, no diary products etc. While that seems like a very small and safe combination of foods – that list of foods is an EoE nightmare awaiting to happen. I cannot tell you the gamble and trust we’ve put into this diet and have all the prayers in the world banking that these foods are proven to actually be safe to Annabelle from an EoE standpoint.

All that to say, the reason our GI called is that she wants an Endoscopy scheduled soon. I agreed. With lots of hesitation (because I am terrified to hear news I don’t want to hear), I agreed that it’s due time to move forward with more biopsy’s. I have a couple dates in mind for this procedure, hopefully if everything goes to plan, we can treat this as an outpatient surgery and be home that afternoon. There is so much that will go into this Endoscopy that will be different from all the others before.. there are a flood of unknowns and decisions we will have to make and I hate every single one of them. My biggest fear is this: In order to perform the Endoscopy, Annabelle cannot be fed for nearly 8hr before the surgery. The last trial (by accident, while we were in the MCV ER) Annabelle only made it 4+ hours before crashing bc she wasn’t fed. I am scared.to.death to not feed her for a full 8hr, and then subject her to anesthesia for an hour before we can feed her again. Dear Lord I am terrified.

All those decisions will be made in the near future and I’ll share soon when the surgery is schedule and which day to mark your calendars to flood Annabelle with your prayers.

Meanwhile, a small shipment from our terrible medical supplier was found. They shipped one random box of two cans of formula a week ago, to our OLD house that we sold and moved from in February. Fortunately, the new owners called to let me know they received a package and I picked it up in time to have more food to feed my kid. I am still in the process of switching to a new medical supplier, I have faith we will be much happier with them.

Annabelle is happy as a clam lately. She has truly been a flood of smiles every evening that I get home from work. She continuously asks, ‘mommy snuggle Annabelle’ (which brings up another topic our nurse has raised concerned about. Annabelle continuously references herself in 3^rd person. Im not worried about this, as she just finally started talking but the nurse has a few concerns.. we will just keep working with her and if speech therapy is needed later to bring them back, then we will. But for now – she can be two :) and talk however silly she wants.) Her little personality is flooding in so many directions and she’s truly becoming the energy of the house. There isn’t any way we can avoid it – she’s loud as anything. She marches everywhere she walks. She speaks loud enough to hear her a mile away. She screams to the top of her lungs if she wants something. She laughs without a care in the world. 

She is a ball of energy the last several days. I am so blessed to watch it and be part of her living, laughing and having fun.... and I swear it has something to do with the weather and the sun finally coming out ;)

A few weeks ago AK and I took the girls to Bush Gardens. Their little world lit up. We learned quickly that we have not only 1 dare devil, but Annabelle is right on Mady’s heels for the roller coasters. Poor Belle still cannot ride many of the rides, but every single one that she can, she did. And screamed with enjoyment the entire time.

She wore out very, very quickly.. she rode in the stroller or I carried her for 90% of the day, but she smiled the entire time and that was worth it. We are learning how to live and enjoy life within the restrictions of her body’s demands. I am learning her threshold of how long she can run and play before hitting a wall of sheer exhaustion vs lethargic and barely conscious. We are gauging these things with much more confidence and ease. Annabelle’s communication about how she’s feeling helps tremendously. She can tell us if she doesn’t feel good, if she is tired, if her tubey hurts, if she needs to vent/make bubbles, hungry, thirsty etc. These are all things that she used to only communicate thru screams and whimpering, I am so very grateful she can help us navigate her pains now and AK and I are not left in the dark on how to help our kiddo thru difficult times.

Life is good. It isn’t great by any means, but we’re blessed beyond words.We are moving along and starting to wear more smiles than tears than we have over the last year. I am grateful for those. Life ahead looks more promising, with it’s own share of worries and fears but we will, without a doubt make it thru each of them. God is good.