It's going to be a busy day.

Annabelle had a great weekend, all things considered.

Yesterday evening I had to stay at the office and work late. I have so many things on my plate I am trying to wrap up before I leave, I will hardly be in the office at all this week and I wanted to get things finished while they were still on my mind. I had the girls dropped off at my work after everyone was gone and they played in the middle of the floor, going crazy with sheets of paper, highlighters and post-it notes! They had a great time and truly couldn’t have behaved any better while I wrapped things up.

We left late and rushed home to try to get dinner on the table. The chicken I planned to use wasn’t thawed so I looked at Madelynne and asked what she wanted for dinner, she asked for Wendy’s. I grabbed my keys and Mady and I had a Wendy’s date alone. Annabelle was being more than a bear, so I left her with AK J She spent her evening extremely fussy, whining and then fought bedtime. Last night Annabelle woke up from a dead sleep, screaming her head off. Full blood curdling screams of pain. Nothing could help her.. we tried everything. She only wanted to be held, and held close, but when you couldn’t help her, she wanted away. As soon as she was down, she wanted to be held for comfort. She wanted her cup but couldn’t drink anything. Cartoons couldn’t catch her attention, singing, pacing the house – absolutely nothing could calm her down. I can’t tell you how many laps around the house were made. Finally, you could tell she was wearing herself out fast.. she was crying so hard but with her eyes closed and her sweet head on your shoulder. There just isn’t anything we can do for her and it’s such a helpless feeling. Hoping she wouldn’t wake her sissy in their room, we laid her back down to sleep and of course she lost it.. she only cried for a short time before crying herself to sleep in her bed.

I don’t know if her temperature had dropped and then recovered, her skin was very cold, clammy and she was acting extremely irrational. Or it truly could have just been a terrible bout of pain that wouldn’t go away.. pain isn’t a rare occurrence for poor Annabelle, but it never gets easier.

Other updates

She’s been having nosebleeds constantly lately. Im trying not to read too far into these. To be honest, I really do believe they’re from this gross mold in the air, she is allergic to mold but I cannot give her any allergy meds because we are Patch Testing this week and it will ruin the test. She was also on oxygen all day Thursday, in a dry sterile hospital which I am sure dried her little nose out. That’s when the nosebleeds began so I am sure it’s just irritated and not quite healed. Hopefully they will stop soon, they seem to be slowing down.. only occasionally do I notice dried blood around her nose here and there.

Annabelle has gained 7-8lb in the last week and a half. She has been eating well, but definitely not that well. Last week she was going between eating for a couple days and then zero appetite at all… all I could get in her were small sips of water. I noticed this week as I have tried to put different pairs of shoes on, her fat little feet are so swollen I cannot get most her shoes to fit at all.. let alone be comfortable. This tells us that the weight she’s gained is not true healthy weight – it’s fluid she is holding but I have no idea from where. When I discussed this with Dr. Konikoff (CHKD GI), two things came to mind for him: Liver and Heart. Both organs have the ability to cause complications and weight gain like this. The last time we did her bloodwork, all her levels were normal – that was 2-3weeks ago so we may repeat that bloodwork today to at least compare if any of those levels have fluctuated and could explain why she is doing this. Heart and the Liver are also two of the main areas that are affected from Mitochondrial Disease.

Today I am drinking an insane quantity of coffee.

We are packing and getting on the road around 11:30am to head to Children’s Hospital of the King’s Daughter’s in Norfolk. 

• We will meet with Dr. Maples at the hospital and will begin Patch Testing exactly at 1:30pm. I hope every ounce of this process is 100% painless, for Annabelle’s sake. Im not exactly sure what to expect yet. 
• Afterwards we will meet with a Pulmonologist to discuss respiratory, breathing concerns.
• Around 3:30pm we will head upstairs to see Dr. Konikoff in the afternoon. There are many, MANY things him and I plan to discuss.

It’s going to be a very long, exhausting day for the both of us. I have a lot of paperwork and phone calls to make on our adventure to the hospital – each doctor is requesting different reports/results/labs, etc so I am trying to track down all that information and have it sent to each doctor. It’s a mess. AK looked over our phone bill last weekend, in under a month, I have used over 2,200 minutes. Im going to have brain cancer in no time. Thank goodness for hands-free in our car considering that’s where it seems we spend so much of our time lately!  

Pray for my patience, sanity and energy today. Safe travels to and from Norfolk and also the support from Dr. Teasley's team to get us seen as soon as possible! Fingers crossed for all good news and no pain for Annabelle today.