AK left for work around 4am, leaving me with double-duty during the crappiest of weeks yet (it was work related and he didn't have much choice). I couldn't sleep at all after he left and I tossed and turned until I finally just got out of bed around 5am. Took a shower and of course could hear a baby screaming (because isn't that always the case? Do other parents do that or just me? I always hear a baby crying when Im showering.. ). I jumped out and wrapped a towel around me.. I turned the TV onto Video-1 to see the kids room on the survellience camera and Annabelle was tossing around. I went upstairs to check on her to see if she was alright since I didn't quite know if she had been crying while I was in the shower. When I walked in her room I could hear her moaning and then she stopped suddenly. Just as I walked over, she began trembling.. then she started shaking even harder. Once it was over she took several deep breaths with a moan and went right back to sleep. Every time she has these episodes, it's as if it wears her completely out and she sleeps. I packed the car before carrying Mady and Belle in their jammies outside and loading them up. I took them to the sitter's with a bag packed of things to change into later.. it was early for them and there just wasn't any point in making them get dressed and waking up so early.
I got to work a little before 6:30am and tried to get things done before my first meeting of the day. I am slammed busy at work and can't seem to find enough time to finalize everything I'm working on. I worked until I got the call that afternoon and needed to bring Belle in to the pediatrician ASAP.
Doctor Young needed to perform Annabelle's physical to clear her for the MRI and she wanted to discuss with me Mitochondrial Disease. She pulled up her other two patients that have finally gotten their diagnosis with Mito and Annabelle's case is mirroring theirs in several different ways.. so much so, it's scary. She wanted to talk with me about this potentially being Mitochondrial and to get prepared for a bumpy, heartbreaking, most expensive ride of my life. . . we're talking 'Broke-Bankrupt-Rest-of-your-life' expensive. We discussed several scenario's of Mito and I finally agreed that we can begin the work-up to begin it's process. Dr. Young will be contacting Dr. Teasley and scheduling us to see her very soon. I am anxiously waiting to hear when we get an appointment... I am scared to death to hear her opinion :(
After leaving the doctors office, I loaded the girls into the car in the rain and headed towards Chesterfield Town Center. We left the office at 4pm but Mady's swim lessons didn't begin until 5:30pm so I had some time to kill and we decided to make a lap around the mall. I somehow made my way into Stride Rite and found Mady some adorable (clearanced), new shoes. She loves them. Annabelle tried on 15 different pair but I couldn't justify $30 on her shoes when she has a closet full of her sissy's barely worn hand-me-downs. We headed out just in time to approach the department store doors when buckets began falling from the sky. When I say buckets.. I mean a freaking downpour. I mumbled, 'just my luke, huh?', I threw the diaper bag on my shoulder and handled all the bags into my hands and prepared for my dash pushing the double stroller to the car. It was chaos but we all made it... we arrived to Aqua-Tots Swim School, 1/4mi down the road where the rain was coming down no lighter and ran inside. When we walked thru the doors I joked to the poor ladies at the counter, "THAT is why we need swimming lessons! We're all going to drown out there!!" Madelynne did wonderful at lessons and Annabelle behaved very well. She spent most her time sitting in my lap or sitting in her own chair. She didn't have much energy from the excitement of the afternoon.. she isn't used to being out and stimulated that much lately so I think I over did it for her. She was exhausted.
When I got both girls home, we walked in the door and I looked around at the mess of my house. AK was out of town, the girls were both crying and the dog was howling at me. I was so out-numbered and no one was happy. It somehow took every ounce of my energy to get both girls bathed and into jammies and have them in bed without yelling.. they were trying though, Annabelle wouldn't stay in bed and Mady wouldn't stop looking for every distraction possible to keep from going to sleep.
- Mady needed water.
- Annabelle comes out the room
- Mady yells at Annabelle to get back in bed.
- I yell at Mady to stop yelling at Annabelle
- Annabelle takes her diaper off and pee's on her bed.
- I change sheets and Belle.
- Mady comes downstairs and asks for her LeapPad - ARE YOU CRAZY?! NO!
- Annabelle cries because I yell at her again to get back in bed.
I ran upstairs to find Annabelle covered in spray sunblock and pulling everything out of our pool bag. Oh my goodness child, do I love you so much!! I squeezed her tight because the alternative was to lose my mind. I wanted to laugh and cry at the exact same time so I decided to lay her in bed, smoother her in kisses and beg her to go to sleep. That was the last time I had to go upstairs, fortunately. But my energy for doing much more work was running thin. I jumped in a quick shower and came back to my laptop until about 11pm when I crawled in bed.
Zoey (our pup) knew daddy wasn't home and she couldn't wait until I told her it was bedtime. Without a second thought, she jumped into bed and curled into a ball right by my belly. She is the best snuggling pup ever.. all 40lb of her Boxer self, her body temperature is about 150 degrees and she kept me so warm last night, it was wonderful... almost too wonderful and I didn't miss AK as much as I should ;) I kid, I kid!
Annabelle woke at 12pm, 2:30am and 4am. All in all isn't wasn't too bad. But everytime she woke up, I couldn't go to sleep. At 2:30am I could hear her crying, which quickly turned into a couple loud panicked screams and then silence, by the time I made it to her room - she was seizing. It finally stopped and she rolled around a small bit, then it started again. I kept trying to open my eyes wider and wider.. almost as if I didn't believe what I was seeing. I wanted to turn on the light but I didn't want to startle Annabelle or wake Mady. Once it stopped, I rolled Annabelle over to her back and watched her for a second, it began again, only this time it was much shorter of a spell. I didn't know what to do. I was terrified and scared to death if it would happen again. I sat in her room and watched her for God knows how long. Finally when I could feel myself falling asleep sitting up, I headed back downstairs. I made sure all her monitors were working and I turned the TV onto her camera and watched her like a hawk. I hardly closed my eyes when I heard her yell at 4am. That time she was only crying, coughing and choking. Her temperature was 94.9.
At 4:30am when I crawled back in bed, I held Zoey and rubbed her until I managed to swallow over my pounding heart and get a small bit of rest before allowing myself to get up for the day. I needed my rest for the day, it's MRI day and I knew I would be busy. Close your eyes Ashley and sleep - you'll be kicking yourself tomorrow if you don't. I keep giving myself a pep talk like I am a fool and it will work.. I can't rest and I won't until I hear good news for my little girl. Even when I sleep, I dream in fear of something terrible happening and I wake up in a panic. I would give anything to go back into a walk in my own shoes 5 years ago when I didn't have a care in the world and could sleep for 12hours straight without responsibilies, fears and the heavy heartache I carry right now. I just want genuine, peaceful rest - I can't imagine ever getting that again.
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