We have a case of the Monday's

Annabelle seemed to have a pretty good weekend, all things considered. She did rest a lot but without excessive sleep.. which left her awake for much of the time but too tired to do anything. We enjoyed outside as much as we could because the weather was too welcoming to not to. Annabelle has been having trouble with her temperature suddenly again as well.. this hasn't been a problem for months and it's returned.

Yesterday afternoon at a family cookout, Annabelle was running and playing with all the other kids until I saw her begin to stumble from across the yard - I knew she needed to eat something so I encouraged her to come sit down.. she did but with her head on my chest, completely exhausted. She started shaking, but not as if she were having a seizure - she just felt like she was shivering. It was 85 degrees outside! I didn't think much about it and sat her in the chair next to me while AK made her a dinner plate. I continued conversations with family and friends and then looked down to my sweet Annabelle to the right of me, slowly eating and just staring off.. I kept asking if she was ok and put my hand over her arm - that's when I noticed how cold she was. I was shocked and quite surprised.. this hasn't happened in so long, I was almost nervous for a short moment! I asked AK to feel her and he felt her arms, legs and forehead and looked at me with such a serious face "She's cold Ashley, why? What should we do?" I told him, "I don't know.. do you think it's because she got too hot? Let's just watch her.. I don't want all these people to freak out if something happens. If she seems bad, I'll take her inside or we can leave.." Annabelle sat down for quite a while with me. It took at least 20min before she began to feel warm again. Her limbs were like ice, I have no clue what her temperature dropped to. She was shivering sitting there eating as all the rest of us were sweating and chugging iced tea. I just shook my head, put the usual smile across my face and made the most out of the rest of our evening. Annabelle shaped up very well afterwards..she resumed playing, just a little slower this time - taking breaks often to just sit on a toy, or stand back and watch vs. running. I could tell she was slowing down and she needed to get home. But she was playing, she was laughing, she was yelling, learning, she was living.. how can I pull her away from that?!

This morning Annabelle had to be woken to go to the sitter's house. She fussed a LOT on the way in the car and kept whining, "Mommy.. mommy.. hold". The best I could offer was my hand, twisted backwards like a double-jointed freak with my shoulder prying out of it's socket. I held her hand from the front seat until we arrived at the sitter's house. She seemed so sleepy, when I carried her inside (with her pillow that she insisted on bringing along), she immediately laid down - didn't acknowledge I was leaving and just curled up to fall back asleep. Today was the first day our sitter struggled to make Annabelle eat only 4oz every 3hrs. Each time Annabelle would hand her cup back and say 'done', the cup was still half full (half empty .. you say tomato - I say to-mato). Because she struggled just to drink a few ounces today, she didn't eat any food.. but Annabelle didn't seem phased by it. We got home and she still wasn't interested in eating.

I interviewed a nurse this evening. She was wonderful. Unfortunately the best time for her to visit us in our home was at 5:30pm - which is the crunch time for our family. It's within the hour that were all getting home, and the kids are Starving.To.Death! I immediately started making pasta sauce as soon as I got home and had that simmering for AK to finish preparing the rest of the meal to make baked ziti with Madelynne while I talked with the nurse. We discussed what things I was looking for with Annabelle. She shared her story about her daughter who just underwent brain surgery, and also has experienced complete hell with MCV. I felt like she could finish my sentences as I shared our summarized journey with Annabelle. We took a lap around the house and pointed out the way everything runs and our routines and systems. I think she will be a good fit. We will have to work on a good compromise for her hours and what times work best for our family, but overall - I hope something works soon. I will call the agency tomorrow with my decision after AK and I talk tonight.

We definitely need the help, Annabelle needs to be back home and within a nurses care, not that I'm not in love with our sitter - I am just terrified of the upcoming fall season and even more scared of whatever is next on her journey. I am always scared about what's next. I hate that fear that I carry - I wish I could have all the hope for the future, but that would be a lie if I said I do.. I pray for the future, but my prayers are generated from all the fears I have when I look ahead. I have a bad intuition about going into this cold/flu season. I hope it's just my irrational mommy fears kicking into high gear. Gosh I wish Annabelle could have OJ! I would boost her immune system really quick! haha

We've removed Potatoes completely from her diet to see if that helps resolve the horrible rash on her bottom. I have been battling this terribly painful looking rash that bleeds constantly without much luck. Sometimes I can get it to clear up a decent amount, but within a day it comes back. Because she failed Sweet Potatoes so quickly, our pediatrician and I decided to cut out white potatoes for a few weeks and see if that's the cause to this never-ending rash. If not, we will give her white potatoes back because I do not think she's flaring from an EoE standpoint - I think what I am seeing is purely an allergy thing.

That being said, all she is left with right now are apples that are safe. And green beans that are new, but she does not like them. I can't tell if it's a texture issue or what keeps her from eating green beans, but we cannot get her to eat them to save us. Her diet mostly consist of apples, applesauce, apple slices and baked plain apples to soften. Oh, and 36oz x day of Elecare Jr. That's it.

The rest of the day consisted of arguing with our Medical Supplier to get the correct supplies we are supposed to be receiving. They have been sending us the wrong syringes to use with Annabelle's tube, despite my correcting her over a month ago on the order (If anyone needs Luer-Lok Tip 5ml syringes, let me know and I'll drop them in the mail for you!). I also need Duo-Derm despite my insurance denying the coverage for it. Annabelle (like me and Mady), is allergic to tape, and the paper tape is much worse. Her poor face breaks out so bad. I also can only get her tube placed on one side so that has been the side to wear the tape for weeks (we change it often.. but it's always something on there), this weekend I had to truly give the right side of her face a break and pull the tube to the left side of her face, but still in her right nostril and tape it accordingly. Poor kiddo. I hate this damn tube so much - but it's also a blessing in disguise. A TRUE Love-Hate.

I attempted to request Mileage Reimbursement for our trips back and forth to Johns Hopkins, CHKD etc. To my surprise (sarcasm), they denied the reimbursement because Hopkins is out of the state. Shocker. Oh well, it was a nice shot at least.

Tomorrow we have an evaluation with the pediatrician before being seen by the genetic team Wednesday at Hopkins. I should hear from Genetics tomorrow sometime for all the final instruction before we come up. Our appointment is at 2p and we need to be in clinic no later than 1:30p. At least that means we can leave AT or slightly after rush hour to get there.. fingers crossed for a smooth trip.

Tonight AK and I are exhausted. I think it's the rainy Monday that we've all had. What a perfect day it would have been to stay home in sweat pants with the family and cuddle under blankets with a movie? Yea, that's the way I would have preferred to spend this rainy day! Instead our home is a lot more chaotic - the house needs to be picked up now that the girls are in bed and AK is installing a new garbage disposal because... well, life gives us lemons, constantly. And there is nothing more disgusting than a broken garbage disposal. I gave him about 2hrs before I demanded it needed to be replaced ASAP. Tis' our life! :) One day we will sit on a porch swing, a glass of wine in my hand and my head on his shoulder and we will laugh and shake our heads, "How did we ever make it thru that... ?" Until then, *yawn*!

Here's what our sleepy beauty looks like tonight <3 

Sweet Dreams World.