Time seems to be passing so quickly. I cant believe we are already into a new year, seems I was just getting used to writing 2011 as the date, now it begins all over again. You ever wish we had a remote control that controlled our lives. Pressing fast forward through some of the most difficut times and pause to slow things down a bit to remember the best of times. I would love to have a slow down button on my kids as it seems time is going by way to quickly.Alexa has been doing just ok lately. She seems to be doing better in some things and worse with others. Like it seems she is attempting more language. Yay! Nothing is clear and most things are just approximations, but... she is attempting it and that makes me so happy. Her energy level however has gone down. Now dont get me wrong she is able to have really good spurts where you look at her and she seems perfectly "normal". Those spurts usually dont last more than a couple of hours at most, and then she pays for them dearly later. Lately she just wants to lay around or be held. Her new favorite game is to have Kaylie make a bed on the floor using every blanket in our house and pretend to take a nap. She does this for looong periods of time. It is nice for me though because at least she's not stuck to me. My little cling on. Her cold is pretty bad right now, so maybe this is impacting her energy levels I dont know. She's been needing a lot of suctioning, chest PT, and her cough assist lately. Poor kid isnt able to clear her lungs very well. This all takes a bunch out of her. Alexa is still losing weight she is down to 19lbs... Please pray that she starts gaining or maintaining her weight. It's so scary to see her dwindling away.
We've also noticed that she is having increasing weakness on her right side. This is scary because it makes her more clumsy. She's been falling a lot more as she is having a hard time coordinating her movements when her right leg is lagging behind. Also it seems like she is regressing with some of her fine motor skills as well. For example she used to be able to do a finger pinch grasp to pick things up or hold them, now she is only able to fist things. Like when you give a kid cheerios instead of having the fine coordination to pick one up she now has to rake them into her hand and suck on her hand to get them into her mouth. Kinda grosses me out a bit cuz she gets sooo drooly. Also we've noticd that she isnt able to do some of the signs she was able to a while back. She understands them and does partial ones but has a hard time controlling her fingers the way she wants to. This frustrates her so much. It makes it harder to know what she wants, and has caused many more breakdowns. 
We have early interventions nearly everyday. Which may seem like a bit much, but it is good because they make her do things. The early interventions team we're now working with is wonderful. They offer so many programs. Right now she meets with PT, OT, speech therapy, child developmentalist, a nurse and now this great new program expressive movement (basically baby gymnastics). She loves this! We are also hoping to get her involved with animal therapy as she loves animals. We start our family signing classes this weekend and we're are excited to finally start learning and implementing our new language even more. Sometimes all these appointments can be very overwhelming, especially with all her other doctor appointments. Having people come into your house everyday at first seems like a bit much, but I've quickly gotten used to it and like the fact that Alexa gets that extra one on one time. I feel like these things have all helped her exceed her doctors epectations. We do want to get her involved with the palliative care program as well, but I've been putting it off just because things have been so hectic around here. They offer a lot of different things for kids with chronic or life threatening illnesses. 
Kaylie has been going through a bit of a rough time of it lately. I think she is now feeling the stress we've been under for the past 2 years. We've tried to keep it seperate from her, but it's hard to shelter her from our lives. I wonder if she is feeling depressed. She's been acting out a lot more, talking back and having fits. This is not normal Kaylie behavior. I know she gets lonely for kids her age, and I know that she sometimes feels like we favor Alexa. We try so hard not to do this, but looking back we do try to pacify Alexa more quickly than we have done with Kaylie in the past. I wish I could say that we could fix this, but I have a feeling that the sicker Alexa gets the more difficult this will become. Kaylie is still our good girl, but she has become a bit more difficult to deal with at times. One of our favorite things to do at night when it's just the two of us is to watch AFV (America's Funniest Videos). She's on this kick where she wants me to "keep our camera rolling" her words... So that if something really funny happens we can win $10,000. So now whenever something even slightly amuses her she'll blame me for not having the camera rolling and losing our chance to win. Funny kid. I wrote most of this 2 weeks ago but havent had the computer the last couple of weeks because our other computer broke and Kevin has been bringing this one with him for school.
Lately things have been very difficult for our family for a lot of different reasons, that I wont go into now. I just want to thank everyone for all their kindnesses, hope and prayers. Without you all (you know who you are) I dont know how we would have made it. We appreciate everything so much, and are so thankful for everything. At some point I wil be able to write about our struggles, but things are to hard right now. As we are still dealing with it. Maybe when things get better and we have a little distance from everthing it will be easier to write about.I'm going to try to update a little sooner next time. As long as I can get some good computer time on the weekend.
