Bad days...

 

There are good days and bad days, we're trying to take them one at a time.  Although nothing specific has happened it's just been a couple of bad days.  My emotions have sort of been all over the place, and that is probably partly why things have been so off.  It seems that as soon as I said aloud Alexa was over her cold she got a new one...  Ulgh!  She's been quite miserable which of course makes everyone else miserable.  I think we are going to have to increase her chest PT and cough assist treatments.  It seems the only thing that helps her. 

house keeping

We went to Boston yesterday to see her GI doc and just as I expected she isnt gaining weight so they are increasing her tube feeds.  To most this will just be gibberish, but I want to write it down so I can look back and remember what she was getting at this time.  Right now her feeds are Neocate 24Kcal @ 50cc's/hr for 20 hrs daily via j-tube.  We are hoping to get her up to 60cc's/hr for 20 hours daily.  Hopefully this will do the trick and she'll start gaining properly.  Her doc also said it's not uncommon for her to lose interest in food like she has, but that we have to keep trying so she doesnt lose interest altogether.  I worry because some days her swallowing is so bad.  You just hear her choking, and coughing.  I try hard not to freak out, because I dont want her to think she needs to be fearful of eating,but it really scares me.  Both her GI doc and ENT doc have mentioned getting her tonsils out.  They arent enlarged or infected, but apparently they dont want them to become an obstruction and make breathing anymore dificult.   Nothing definate, but not something we're not looking forward to.

I've been busy planning Kaylie's 7th birthday party.  My goodness it goes by so quickly.  It feels like we should be celebrating maybe her 3rd or 4th birthday not her 7th!  All this planning has made me think a lot about Alexa's future.  I know I should be focusing on the here and now, it's just hard sometimes.  I cant seem to get this thought out of my head.  Will I get to plan Alexa's 7th birthday?  If so what will her life be like then?  As hard as I try I cant picture it, the options all seem so bleak.  I just want our little girl to be here and to  be happy, I hope we are able to provide that for her...

The beach... too bad this wouldve been nice

The house hunt goes on.  What a disapointment the house in Wareham was.  I wanted so bad to like it as the ocean was literally a block away.  Lets just say the entire house would fit into our current kitchen and living room.  I dont mind downsizing a bit as the house we have now is pretty big, but I would like to have bedrooms that are bigger than our bathroom.  How misleading telling me there's a yard and it's a 3BR.  Go outside put your arms out and that was the size of the yard.  We would of literally been living on top of eachother.  We just have to hope there is something much better out there.   I just wish the guy hadnt wasted my time or my gas.  If I were him I would've been a little embarrassed.  There are just so few houses for rent...  Something will come up, it has to. 

up to no good

Alexa has picked up some more signs. In the last week or two she has picked up the signs for thank you, cookie, help, bird, water, fish, up, cracker, and a few more.  I love seeing her communicating with us.  So much better than when she screaches to get her point across.  I was able to take a lot of pictures at the hospital yesterday, but forgot to take any when the doctor was in the room.  So I'll have to make sure to get some next time.   It was a little embarassing snapping photos of the elevator, the doors, and everything else.  I had a few funny looks from people, I tried to shrug it off, but it mustve been a little funny seeing someone take pictures of such bizzare things. 

Kaylie with her fairy godmother Jenny

We were able to picnic with good friends on Sunday, and that brightened the weekend considerably.  Thank goodness for friends that you know you can count on and will always be there for you.  It helps lighten our burden quite a bit.  We had so much fun doing normal things like wiffle ball, and swimming (well Kaylie anyway).