Well I guess if I'm gonna be awake every morning around 1:30 because of Charley's constant knocking on the bed I might as well blog. I've been up for over an hour and I'm officially in sleep deprived crying mode. I will be calling the doctor first thing in the morning to see what he can do. I'm not sure if its a medication thing or if the universe just hates me. On a much happier note Charley has been making great progress on a few things. She is holding her drink cup and bringing to her mouth for sips. When she's all done she is gently handing me the cup instead of throwing it. Also - with a little help - she is identifying her nose. I hold her forearm steady and ask "Charley where is your nose" and she turns her little hand and touches her nose. It is a huge deal! And yes the knocking is still going on as I type this....deep cleansing breaths it's 3:13 a.m.
I know it's silly to be so frustrated by lack of sleep right now since I am 7 and half months pregnant. Obviously I will not be sleeping anytime soon but since its my almost 10 year old that isn't sleeping through the night - I'm a little perturbed. Ever since her cast came off in October she's been waking up constantly. She will pull to stand in her bed and pound on the window or wall non stop until I come in. I keep thinking its going to stop but it hasn't. Last night was the worst night we've had in awhile. It started at 1:30 and has been going on about ever hour since. It makes me feel like a crazy person. Any ideas Moms?
*Caution there will be poop and vomit talk in this blog post read at your own risk* Charley has been fighting a cold since Christmas. When she can't breath through her nose she doesn't want to drink. I have been trying to push the fluids but it has been slow going. Since she already has GI issues the decreased fluid intake affects her bowls. During the course of the week I gave her three doses of miralax to encourage a bowel movement. Nothing. I called the appointment line yesterday morning because she's been very uncomfortable. 32 callers ahead of me while Charley is screaming in her Room. After about 4 minutes she starts to settle down and I realize Keith has climbed in her bed with her. I finally talk to someone just to learn that there are no appointments but a nurse will call me back. Most of the day was challenging to say the least. Charley's unspoken wants and needs are expressed through a series of self injurious behaviors and/or aggressive behaviors toward me. After a short nap she finally had a BM. It was not a one person job by any means. Keith pulled his shirt over his nose and loving held Charley's arms so she wouldn't "help" me with the diaper change. About an hour later we repeated the whole process. I'm thinking to myself okay surely she's gonna feel better after all that- however the behaviors continued. We took at trip to Costco and the ride home was a nightmare. She was screaming and hitting and clawing at Keith and myself. I cried and felt defeated then took a deep breath and prepared for dinner. At dinner she picked every battle. Spitting after each bite and then refusing to eat. I was in my calm place and I told her "we can do this all night I have no where to be". At this point I'm thinking its 100% behavioral because this girl can be stubborn. After about our 12th time out for behaviors she let out two huge burps. I asked her if her tummy was bothering her this whole time and said "I'm so sorry I didn't know" (which of course I NEVER know because the whole thing is a guessing game). Charley then proceeded to projectile vomit everywhere for about 3 minutes. Literally everywhere - I had vomited applesauce in my right eye on my face, too, jeans and shoes. Keith rushed over to help and grabbed me a paper towel to clean myself off. I went to start Charley a warm bath and Keith just stod there looking at me. He hesitantly said you still have vomit on your face - I wanted to laugh so hard. He wiped my face and then helped me get Charley in the bath tub. While I bathed her he cleaned up all the vomit on the floor. He also cleaned her feeding chair and put all he clothes down to be washed. It was a crazy day. The frustration I feel from almost 10 years of guessing what my child's wants or needs are is weighing on me. It breaks my heart that she is so trapped inside her body and mind. I just wanted to scream at God and ask him why. I already know that asking why to a question that has no answer is dangerous - something I've learned from years of on again off again therapy. So instead of crying or screaming I snuggled Charley in her bed and thanked God for these times when Charley actually lets me hold her. I laughed a little because my right eye was still bothering me and I knew I needed to grab some eye drops to flush it out - only a mother would be able to laugh about vomit in her eye. Then my heart filled with an overwhelming feeling of love and gratitude. I thanked God for Keith. We call him Daddy K because he's her stepdad but there is nothing stepdad about him. He is full time 100% there for my Charley girl and if that doesn't make you a Dad I don't know what does. I love my little family and I so glad we survived yesterday.
Today was another rough day with Charley and her aggressive behaviors but there were some amazing moments. At the San Diego Zoo she wore her glasses a little and looked up at some of the animals. On the way home we grabbed a pizza from Bronx Pizza and Charley actually had a slice. She loved it. I should have known she would like their pizza - only the best for my Charley girl. It has been a pretty good start to our 2013. One of my big resolutions is to strive to find joy in the simplest of things. It's so easy to get pulled down by all the "seriousness" of raising a child like Charley and I don't want that to overshadow the joys.
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