It's getting chilly outside!

It's the time of the year that scares the snot out of us. Perhaps literally.. Germs are everywhere and Annabelle, for the first time ever, is in preschool. Aka: The Top Germ Exchange. 

Her school is doing a great job at keeping the germs at bay and also communicating with us when someone is sick. We've had to keep Belle at home a few days bc the exposure was just too risky. Annabelle understands. When she does go back to school, she wears a mask. 

The rest of our family is battling our own germs. Let me tell you, living in the same home with a child w/ very little immune system, while you're sick and still parenting = nightmare. AK and I have both been sick the past week or so, all the while Belle is fighting a cold for the third week in a row. (3+ weeks for a cold is common for her immune system) We're practically bathing in clorox and praying the winter germ season is kind to our family.

Annabelle is doing well otherwise. It took her several weeks to recover from her birthday. We still do not know if it was the birthday cake, exposure to another food or something she ingested in general - but her immune system reacted, and violently. She steadily lost weight and we've struggled for her to put it back on. She's experiencing allergic reactions more often now than she has in years. (allergic reactions being completely outside of the disease itself). You can tell that Annabelle isn't well. She complains of her tummy hurting almost daily but we don't know what to do to help her. We cannot go back on medications that we know would help her because we are still in the middle of a food trial.

While we are not 'excited' to go back to Cincinnati Children's Hospital in a month, as a parent, I am relieved that we will gain another look into how Annabelle is progressing. It worries me when she doesn't have medical care but every 16wks. She's NEVER gone that long between visits before. But anything more frequent just isn't possible for our family. Annabelle is strong and doing so well. I haven't told her that Cincinnati is upcoming. We are going to get thru Halloween and have some more fun and then we will begin talking to her about it. She's getting older and wiser with each visit. Her little body is consumed with fears and sometimes realistic expectations about the upcoming hell. It's hard to soothe those worries in a 4year old baby.. as a parent, learning how to coach her thru them and talk to her on a level she will understand at that time, is so difficult and ever-changing. Meanwhile, we laugh, play, learn and have fun. Annabelle is dancing and doing gymnastics and loves every minute of it. She is a walking miracle and completely blessed by the outpouring prayers from all of you, thank you so very much, for every minute of prayer in which you share my baby girls name.

Allergic reactions and losing weight

Bombshells for Belle was a blast. We had a great time, the kids played, they were filthy dirty. Friends and family came out to support us and the event carried on despite the promise of awful inclement weather. Annabelle made some new friends as did we. We cannot thank Bombshells for Belle enough for all their hard work and efforts in pulling together such a wonderful event for Ms. Annabelle!

Since the event though, we have had a tough time. Annabelle woke the next morning experiencing an awful allergic reaction. I passed her in the hallway before I left for work and with a split second glance at her face, my stomach fell to the floor and I dropped to my knees to look at her more closely. Her face was terribly swollen everywhere, from her ears, eyes, cheeks, chin, mouth etc. It was bright red and hot to the touch. I called our doctor and her response "What has she been exposed to?" ....well.. the day prior was Bombshells for Belle so really, the sky is the limit! My stomach sank even faster. I knew I should have kept a closer eye on her, I KNEW I should have made her wear a mask the entire day. I was so mad at myself .. but none of that mattered now. I gave Annabelle a strong dose of benadryl and headed into work. The day moved as I sat on pins and needles while the nurse gave me updates nearly every hour on how she was doing, her breathing and what the swelling/redness looked like.

It took several days for the reaction to finally go away. Then, yesterday (Saturday), another allergic reaction developed. This time I KNEW she hadn't been exposed to anything out of the ordinary. Her mouth, lips, chin etc were red, splotchy and swollen. I have no idea what is making this little girl react but it's frightening me. She hasn't had visible allergic reactions like these in years - and now two in only a week.

Also, to add insult to injury, Annabelle has lost TWO pounds in only two weeks. For any parent of a tube-fed child, seeing a number DROP on a scale is one of the most nauseating things to watch happen. You don't know why it's happening, you feel like you're doing all you can but your child's little body just can't keep up. Fortunately for us, I may know what is going on. I stopped tube-feeding Annabelle during the nights to give her more comfort, rest and also allow her to sleep better and in big girl undies (this is quite a treat). It's uncomfortable for her to remain hooked and tethered to an IV pole all night, her stomach hurts her when she's being tube fed and potty training during the night is just impossible. Allowing her to end her tube feedings at night was such a reward for all of us. I felt that she was eating enough during the day and now at 4yo, she had enough nutrients and a balanced diet to thrive without needing the tube feeds. Apparently I was wrong. Her appetite for some reason has been poor, she's more sleepy than ever and she's rapidly loosing weight. Back to tube feedings we go :( Poor Belle. Let's cross our fingers and hope this fixes things.

If she doesn't begin to put the weight back on soon and these allergic reactions seize, we will be headed back to Cincinnati much sooner than November 16th!