Always an adventure

Just how long can someone how their breath? I think we're figuring it out!

Annabelle is moving rapidly from giving us a heart attack, to acting as normal as an everyday toddler, daily. Without a doubt, something is very off but we are holding our breath to make it to next week without any 'excitement' (embrace the sarcasm).

Her blood pressure is beginning to balance, thank goodness. She has not regained the weight she's lost, but her appetite picked up in the beginning of the week. Tuesday she had 14 BMs in one day. I handled a series of medical documents to sign all day, faxed a few hospitals and was contacted by our next hospital for more information on Annabelle before our visit. The phone calls were exhausting but the staff seem sincere and eager to help - I hope that's the case. I am looking forward to our appointment for so many sad reasons. Annabelle just needs the right answers, written on paper so we can move forward. Im ready to react and move - I am tired of waiting and watching.

That evening I got home to two beautiful, energetic little girls that wouldn't let me have more than a foot radius of my own space. Dinner needed to be made so I gave them both a task in an effort to making ziti and utilized their desire to smoother me and put their little hands to good use! They did an excellent job. Mady and Belle both LOVE to cook. They made the biggest mess around my kitchen but they enjoyed themselves.

When I made everyone's plates however, it was a different story - Belle is now growing smarter and smarter and associated the casserole of ziti she just baked with her own little project and was NOT happy that she couldn't eat it for herself. Dinner is becoming a bigger issue around our house. Any meal is becoming difficult. Annabelle wants food, she loves food, she wants to be included in what the rest of the house is doing and her two-year-old attitude shows when she is excluded. It's more than heartbreaking. She threw a fit and cried her little eyes out at the dinner table Tuesday night. My heart crumbled. She refused to leave the dinner table. She had no interest in going upstairs for the distraction while Mady ate. She didn't want to watch mouse or play, she wanted to sit at the table and she wanted to eat ziti. SHE SHOULD BE ABLE TO SIT AT THE TABLE AND EAT ZITI!!! :( I hate this, I hate this, I hate this for her so much.

The method of distraction that finally worked: I caved and pulled out all the girls snow gear and decided to make a date with the moonlit yard and first snowfall of 2014. This was Annabelle's first real experience playing in the snow. She was too sick last year to go outside, we never even showed it to her. This year she had a wonderful time. While daddy participated in the fun via Skype, Mady and Belle both played for quite a while (until I couldn't take the cold any longer) and then we all came inside for a warm bath and cozy jammies.

Wednesday she will no longer eat. Today her appetite is minimal and she's beginning to appear lethargic. The energy high has left us and we are bracing for what is next.

Last night was the last of the energy high (medical term: agitation). She wouldn't sit still. She wouldn't rest or stop running and yelling. I put her to bed and she stayed awake in her room for hours. I brought her back downstairs and you could tell her little body was just so tired. After stories and extra snuggles back in bed from Auntie-Andi (who is staying with us while AK travels out of town for the next 3wks), she fell asleep. I laid in bed and watched the ceiling, I just knew something wasn't right. One of the worst things that comes along with this hell-ride we are on, is insomnia. I cannot sleep. Even when I have the time allowance to take a nap, I cannot rest. I cannot turn my brain off and stop thinking, fearing, wishing, contemplating, deciding, dreaming etc. Nor do I want to turn my brain off. It's my brain and heart that tells me first when something isn't right and I wouldn't want to miss it when that sign is there. Last night I laid in bed and knew something was off.. I waited and waited, finally a little after midnight Belle woke up crying - she was in so much pain, extremely irritable, agitated, shaking like a leaf and had tears POURING off her little face. I changed her diaper and tried tucking her back in and it wasn't going to happen. We laid down on the couch together until Andi joined us and we all agreed it was due time to watch some Special Agent Oso (cartoons) to carry us until 3am when she seemed to calm down and get comfortable enough to fall back asleep. Needless to say the night was loooong, it ended without gaining much if any rest / sleep and today were exhausted, but my adrenaline is pushing me forward. Something is still 'off'. I have texted the nurse repeatedly today asking for an update on Annabelle and she continues to confirm the same over and over "She's really tired, she's laying in your bed and napping.."

When I got home from work, Annabelle was acting normal but also very emotional and clingy. After I gave her another bath (bc her BMs are absolutely non-stop), she was upstairs playing in only a diaper. Madelynne ran downstairs in a panic that something was wrong with Belle's tubie, when I checked it out there was blood smeared all over her stomach and diaper. I changed her as quickly as I could and wiped everything clean but the blood is still slowly draining. I have no idea where this bleeding has come from. My best guess is that she may have hit her tummy on something upstairs while the button was unprotected. Poor little girl. I hope the bleeding will slow down, at this point it's a steady rate but not too heavy that I am terribly alarmed - I am changing her dressing about every 20-30m and it appears to be slowing a bit. Fingers crossed it does, because I truly do not have the energy to sit in a hospital this evening.. that is the LAST place we need to be!!