28 hours

Its been a little while since I've been able to update.  We've been so busy lately, just not enough hours in a day.  We got Kaylie back on Sunday after a week of camping with meme and poppy.  Luckily my sister got the fun task of bathing her and getting through the layers of grime.  Apparently she didnt take a bath the entire week, and it didnt look like she brushed her hair either.  So happy Katy fielded that horror show.  Kaylie had a great time though, and that's all that matters.   It was so different without her this week.  Much more quiet and less chaotic.  I was able to get so much done.  However I did miss my Kaylie girl.  Now I just miss the quiet...  Usually when Alexa naps I have one on one time with Kaylie, but this past week I was able to have me time.   Oh how I miss that. 

Kaylie's fun continued even when she got back.  She had a birthday party Sunday, and yesterday we all went to six flags.  What a great time that was, even though we went in 100 degree weather.    I kept the girls smothered in sun screen but failed to put any on myself.  I came home looking like a lobster.  I hurt all over...  I guess that teaches me.  Its funny because Kevin says to me later I thought you were getting a little pink.  Thanks for telling me :) Alexa loved the water, she didnt go more than 3 inches in but would've stayed there all day if we let her.  It was nice having Kev home for the day.  I cant wait until he's working a normal schedule.

Last week we met with Alexa's case manager for Mass health it looks like she qualifies for 28 hours a week of skilled nursing.  This is great as it would allow me to have a little time to myself and possibly even work part time.  Also they think it would be beneficial for Alexa to start having saline nebulizser treatments to start helping to thin out her secretions.  They are alos recommending a cpap machine.  The great thing about having the case manager request things means that the insurance will definatley approve.  It will be great not having to deal with that irritation from now on.

Alexa still isnt gaining any weight and is down quite a bit from her stomach issues and now the decreased caloric intake.  The doctor is thinking of adding duocal to her formula to help.    We also increased her prilosec dose (reflux medication), but we havent seen to much of a difference as of yet.   She still experiences a lot of pain, and this heat isnt helping much.  It seems like all she wants to do the last few days is sleep.  Her legs havent been quite cooperating either, and her balance seems all off.

Alexa has such a funny personality.  She doesnt like most people, and will get very upset if anyone approaches her.  However whenever she sees someone getting ready to leave she starts blowing kisses and waving to them.  Its a win win situation they leave thinking she likes them and she gets to see them go.  Also I figured something out about her.  She loves cats, but I noticed recently that everytime she sees them and does the sign for cat she says Iiii!  It''s because everytime she pets the cats I say NICE, NICE!  So she now thinks all cats are called nice.  lol