Monday, April 9, 2012

Little to report...

I have been out lately.  My laptop died, and my old computer is a serious dinosaur.  I just don't have time to sit here and wait for all the waiting.  I'm grateful to still have a computer, but I just don't have the access as good as I used to. 

Lillian has been battling the same issues that are her life.  She continues to have ruptured ear drums about every 2-3 weeks and last month she had on heck of a viral infection that took me back to trach days.  Retracting and wheezing.  No sleeping for me.  It was a bad one.  She is already battling ANOTHER ear infection and spiking temps almost daily.  Albuterol has been back on our schedule for some time now. 

Her PT told me today they did some sort of test scoring on her.  At her size, she is comparable to about a 3 year old and physically that is about where is she is.  She shared that she wasn't sure how much more progress we would make in certain areas...but we will keep pressing forward.   I think that is a realistic summation.  I actually sat in on her OT last week and had to hold back tears as I watched how hard it was for her to do some of the simplest tasks and then, she would turn around and give me the biggest smile in the world.  Why should I be tearful when she always has a smile?  Such a trooper. It has held me heavy hearted some this week, though.

 I cannot actually believe she is going into Kindergarden next year, in just a few short months.  They are voting on making K full day here next year and I cannot even fathom her handlng that or me either for that matter.  Here, I'd spent all this time in prayer about her going into the special education classroom and had finally felt God's peace about it,  and now I may face her going all day???  Oh mercy.  I have really struggled internally with the thought of her being in a special ed room.  I don't say any of this to hurt others, just to be honest.  It's all me.  My own thoughts. Sometimes I just see her as so average and to think of her separated in that way from all of her peers has been a real struggle.  It is, however, her reality.  If for nothing more than her safety I believe it's the best choice.  She just doesn't have the physical strength that most kids her age do.  I am so grateful to see her moving on in school, bc I know it could be so different, but it just doesn't make it easier to handle.

She is making lots of sounds, and few words pop out here and there.  It's always funny when it happens and so exciting.  She has been struggling with swallowing recently and I hope that is related to all the drainage she is suffering. 

She routinely "talks" with invisible people and it is the funniest thing to watch.  I like to see her bossing them around or encouraging them to come down the slide after her.  a hoot, I tell you. 

Some of the things she loves recently, Good Luck Charlie, the Llama books by Anna Dewdney, Bethany's build a bear alaskan malamute, TACO BELL.  OMW that girl loves some taco bell. 

I cannot even believe we are already into April and this year is just flying by. 

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