This is what's on my mind lately. From the time I wake up to the time I go to sleep, it's always in the back of my mind. Adelyn has a shunt. We know that they have very high rates of malfunctioning but since her first surgery at 5 days old, it's seemed like everything has been perfect. I guess i'm definitely learning that nothing is what it seems. I actually get very high anxiety anytime we are going to a dr appt, bc I'm constantly waiting for another ball to drop on me. We go from time to time for routine MRI's and to see her neurosurgeon. Thankfully, they haven't had to sedate her yet for an MRI, they just hold her still and do a rapid sequence MRI which is good enough to look at her brain and the fluid. May 20th, we went for one of these routine visits, and it turned into anything but routine. Compared to her last scan, the fluid around her brain has increased. It wasn't a drastic increase or he said he would of taken her into surgery right then, but it was definitely an increase. Adelyn isn't showing any signs of a malfunction. She's still herself, happy, playful, smart little self. I'm trying to think positive and that maybe it was just a fluke, but at the same time I dont' want to convince myself that to the point that come August 13th, I'm completely blindsided as they take her into surgery. August 13th is the date that I'm "counting" down to. There are 4 weeks, and 5 days until we take Adelyn back to Med City Children's where they will do a sedated MRI and a shunt tap. The Shunt Tap is where they stick a needle down into the base of her shunt to determine the pressure. I guess some people with hydrocephalus have naturally larger ventricles but if the pressure isn't too high, then they can function like that. If the pressure is too high, then it could start causing brain problems. So these tests are at 8am and then we have to wait 4 long hours to see her surgeon to see what the results are. He informed us on May 20th, that if these tests show that her shunt is indeed malfunctioning, he will take her into surgery that afternoon. I don't like the unknown, especially if that unknown is whether or not my daughter will be having another major brain surgery. It sucks. It consumes my thoughts. I feel like i'm never going to be able to relax and know that everything is truly OK. She's great, people tell me all the time how perfect she is, I agree...but I just can't relax. So all I can do is pray. Pray that she is fine, or that she will be fine, and that this is just another minor bump in her path. There is a saying that I saw when she was little and it fits her so far. She has a determined spirit and won't let anything hold her back. But the saying is "though she be but little, she is fierce." It says it's a Shakespeare quote. I think it fits perfectly. So if you can continue to keep my sweet girl in  your prayers, I'd appreciate it. And  if you have extra time, pray for my sanity and patience. This has been a hard thing for me to roll with...as you can see...everyday I look at the countdown. I'm ready to get passed it and have something else consume my thoughts :)

2013

So far, I have really been enjoying 2013. My kids are at fun stages. Garrison is 4 1/2 and Adelyn is 17 months old. I"m starting to get sad about having a kid that will be starting school this year. I still have 8 more months before he starts, but some how I still feel like my time is dwindling down. Since I only work 3 days a week, my off days are devoted to my kids. The days are always planned around Addy's appointments and a nap schedule and then on teaching Garrison and then play time. Garrison is very smart. He remembers things after being told one time. However, he has a very small attention span and thinks that learning is "stupid." I'm afraid his kinder teacher may have a tough time with this one. Although, I'm sure she is used to 5 year old boys. I have to make Garrison's lessons into a game or else he will not want to sit still. His imagination is wild. He has changed his name and does not like to be called Garrison. His name is Christopher Adam Hunter Cowboy...somedays he drops the cowboy. He loves going to church. He tells me all the time that Jesus made him so that he could protect me, Addy, and daddy. He asked me the other day if I thought he should be a fireman, cop, battle ship guy, or a hair cutter when he grows up. Not real sure where the hair cutter came from but after a brief discussion he decided he'd like to work on a battle ship the best. He really loves his sister. He gets so excited when she gets up in the mornings or from naps. I hear him say "good morning girl" pretty often too her. They hug a lot. They hold hands a lot. Addy loves to just follow him around.

Adelyn is 17 months. Crazy to think she's about to be one and a half. Times goes so fast and it's easier to tell when they are little and it feels like everyday they grow. Addy's been in therapy since she was 3 months old with ECI, early childhood intervention. She has a life skills therapist and a physical therapist. One or the other comes out every week to the house. They seriously feel like family at this point and I know that I owe them so much. Addy's come such a long way. At 3 months when we started, we had no clue where life would take our sweet girl. At 3 months, my biggest fear was that she was blind (she didn't track or look at you). Obviously, those big ol' blue eyes can see just fine now. Then we worked on getting her to roll, then to sit up, then to crawl, cruising to walking. She met all the objectives and wasn't too delayed in any of them. Her annual review was right when she started walking, 15 months and PT cut her loose. I was so excited to go down to one therapist and know that my girl was on target! We were off for 6 weeks but Adam and I were noticing that Addy was not growing out of the typical "funky" toddler walk. We asked her PT to come back out and relook and I knew it, Addy's back in PT twice a month. Addy has a form of MILD hemiparesis. Which is basically just one sided muscle weakness from a "brain injury." It's always been her right side that is weak. She pulls her right hand up as if to stabilize that side and then she sort of drags that right foot and then doesn't want to weight bare on that side so it creates what looks like a limp. We are hoping to get rid of this as much as possible with PT, although her therapist didn't seem too convinced that we would be able to completely get it to correct. Only time will tell and regardless, my girl is ready to take on the world. She is so incredibly determined. She seriously will try for 30 minutes to complete a task. Her therapist's both have commented that this is an odd thing for a baby her age to do but she doesn't give up. They are impressed by her determination. She is also stubborn. We call her our little Diva. She gets her point across and can throw a really really good tantrum.  Her favorite past time is eating. She has a little budha belly. Garrison calls her a "scavenger" She is a messy  messy eater and after she's done eating we have to hurry and clean the floor bc ten minutes  later she will be back in the kitchen trying to see what she can find to eat off the floor!! Her brother is probably her favorite person. I think she thinks he's pretty awesome!