Friday, July 26, 2013

lost in thought

Capri is doing well today. I got to feed her with a bottle!  She only drank 2 cc's so not a whole lot but it was a start.  She does well sucking on a binki and has done so the last few days, it was so funny to see her face when she sucked and food came out.  Her eyes widened and the milk kind of just leaked out of her mouth.  She waited a second then lurched towards the bottle to try again.  After 2 minutes she got very tired and fell asleep.  That is one thing that the Drs are worried about, her heart is working so hard that her body just isn't strong enough to suck on a bottle.

Her liver issues have also gotten worse.  She is supposed to be below a 1 and she was up above 10 today. (I cant remember if that number is enzymes or bilirueben or something completely different) Last night they started her on a medication to help with the liver function and hopefully now that she is eating that will help as well.   On a positive note, all of the genetics tests came back negative.  They thought she may have Turners syndrome ( where you are missing one of your x chromosomes) but everything came back normal.  She will not have any developmental delays or physical problems besides getting tired very easily.  I made a schedule today of our new life
730 wake up
830 leave for hospital
930-12 spend time with Capri, while kids play at play area
eat lunch in the car on the way home
130 nap
330 clean house, do laundry etc
530-830 mike spends time with capri
830 kids in bed
10 mike gets home

This means Mike will only get to see the kids on weekends and on thursday nights at family dinner at my father in laws.  Its defiantly not an ideal situation but I don't know how else to make it work.  The kids start preschool in a few weeks and need to get into the habit of waking up early.  If we are used to leaving the house by 830, getting to school by 9 should not be a problem.
Now that grandparents have left and we are back to paying for everything on our own we are back on the Dave Ramsey program.  Envelopes out, budget even tighter than it used to be but thanks to all of your support we were able to pay off most of our medical bills and we are going to be okay.  Now if i could just figure out a way to get my SUV to get better gas mileage we would be set!

I sat on the 3rd floor of primaries today listening to 2 people playing the piano and violin.  They were not getting paid to be there, just two guys in there 20s donating there time and talent to help parents and children.  It was so calming to listen to them play.  I wish i had a talent like that, it was beautiful.  I sat in the chair, closed my eyes and just let the music consume my brain.  Letting every stress, worry and concern about Capri float away while i got lost in the moment.  I couldn't have been there longer than 10 minutes but i felt so refreshed afterwards.  It reminded me why I loved yoga so much.  A way to forget all your worries if even for just a moment.  I think im going to look into a night class to see if that will help me sleep vs taking sleeping pills.

I feel like i have a plan now and this next month, although stressful is going to be doable.  We are going to be okay