camping

 

The weeks seem to be flying by. We are just finishing up with Kaylie's school, but I have a feeling the summer will be over before we know it.  Time to send in her protfolio of schoolwork, and get her books for next year.  Second grade :(...  Thats all I have to say about that.  We are going to pick up the girls new/used bunk beds.  You've gotta love craigslist...  I'm looking forward to decorating there new room with matching comforters and pretty curtains.  I even have some cool decals to put up on the wall.  I realize its the little things that get us through the hard days.  Looking for the best deal and finding something I loved for the girls gave me something good to do.  Not that I have tons of time or anything, but it was kind of fun. 

The girls loving on Gabe (most laid back cat ever)

Kaylie is going camping with my folks for the week.  Another week without her, makes me sad.  I know she will love it though and it will be good for her to get out of the house away from all the doctor, and therapy appointments, and just sort of be the only kid again.  I know her grandparents spoil her, but she kind of needs that right now.   It's hard for me to sit in the waiting rooms patiently nevermind sit quietly when the doctors are talking, try doing that 2-3 times a week when your 7.  Kaylie usually al)ways makes a friend in the waiting room.  Doesnt matter their abilities she just loves kids, and often doesnt even notice if there is anything wrong.  I love that about her, and I know the other parents appreciate it as well.  With Kaylie gone I will hopefully be able to get some more packing done, and get our house in order for the real estate agent we have coming to our house. 



even when happy she is still grabbing her tummy



Actually Kalie is usually more of a helper, it's much worse with Alexa.  I can not get anything done when she's awake.  She is constantly needing me... I dont just mean medically although that plays a huge part in it.  She just doesnt let me out of her site, and needs to be constantly held.  She is usually always crying...  I know she has been in so much pain lately, but I think she may be giving me a permanent head ache.  This one has lasted almost a full week.  lol  It's gotten to the point where she doesnt even want her daddy to hold her, and just cries for me.  I feel so sad when I feel that internal frustration boiling up and I look over at her and she is signing hurt.  My heart breaks a bit each time, I see that sign.  I feel so guilty for getting frustrated, and no she isnt just munipulating me.  I can see the pain etched into her face as she hugs her tummy.  I think we found a correlation between her pain and her eating.  Ive noticed that lately anytime she has any food by mouth shortly after the pain seems a lot worse.  I dont know what to about this except not let her have anything by mouth.  She already barely eats anything.  I put a call into the doctor and as usual am waiting for a call back. 

The first part of this was written a few days ago, I forgot to post it. 

We went for a camping day trip this weekend when we dropped Kaylie off.  It was sort of relaxing...  Alexa just wasnt very happy.  She did however go into the pond up to her ankles and refused to move a muscle more.  Her cousin Kira was putting her to shame, cruising around in her little boat, and loving every minute of it.  Alexa splashed around a bit and got some sand on her hands, and put her hands in her mouth.... The rest of the day she was crunching on sand.  lol I couldnt get it out. 

Alexa is getting evaluated for respite nursing care on Friday.  From our phone interview they seened pretty sure she qualifies.  I guess now we just see for how many hours.  This isnt what would allow me to go back to work.  Apparently there is another program that handles that.  I just need to do more paperwork, but I think we will wait until we are moved into our new house for that.  We were supposed to pick up the girls new bunk beds this weekend, but the lady we were buying them from went into labor... (how exciting for them) So we'll pick them up either this week or next.  I cant wait to get them, they are so neat.  I wish they had these type when I was growing up.  It would of made sharing a room with Katy so much cooler. 

Alexa has been having so much pain lately.  She now request medicine by signing for it.  It's like she knows it helps her.  I'm just hoping for the day when she doesnt have any pain.  That would be a miracle.  Just a quick update on her diarrhea episodes of last week.  I realize I didnt update.  Her rash is completely gone, the prescription cream worked wonders.  Thank goodness she doesnt need anymore pain.  We slowed her feeds back down to what she was getting before, and her diarrhea is completely gone.  However she lost over a pound of her hard earned weight.  It took us almost 6 months to get that pound on her.  I dont know what they'll have us do.  We're meeting with the nutritionist again next week.  We'll see what they say.