Control

A week without Kaylie... I miss that smile so much and it has only been a couple of days.  Thank you to everyone who is watching her this week.  She's loving it so far and that makes such a difference.  I dont feel so guilty not being with her.  Alexa is taking it better than I would of thought, maybe she is just loving being the center of our attention.  Although she does keep going to Kaylie's room and peeking in.  She seemed to be asking about her today I kept hearing the word Yaya(Alexa's name for Kaylie) amongst all her babble.

Kaylie is in first grade, but thankfully I am able to homeschool her.  She has some learning disabilities although she is very smart.   By homeschooling her I am able to give herr the one on one time she needs, and this allows for a much more flexible schedule.  Surprisingly we've been able to keep up with Kaylie's school, and she should be able to finish when the other kids get off for the summer.  Although I will still have to do some science projects with her.  It's such a wonderful thing to be able to be a part of our child's education, to see her develop new skills and read, knowing that we taught her is such an amazing thing. 

Alexa has her good days and bad.  She had such a good weekend playing with her little cousin Kira, and seeing her Meme and Poppy.  She played hard and has needed the last couple of days to recooperate.  Yesterday she slept for nearly 22 hours.  Today she was better but fatigued very quickly and was cranky for most of the day. Although she was good for most of her 2 therapy appointments.  I'm a little concerned that the doctors might try to persuade us from having her interact with other children unless completely necessary.  She is very susceptible to illness, and isnt able to fight them very well.  Hence the upper respiratory infection lasting nearly 8 months.  The doctors have mentioned it in the past, but I have a hard time limiting my daughter's life like that.  I would never want to take unneccesary risks, but I think that children need to be around others especially their family to enhance their lives.  I feel she is exposed to more going into the hospital for all her many appointments than she is ever exposed to with us.  This is something we are going to have seriously think about. 

Kira and Alexa looking grumpy

We go tomorrow for Alexa's hearing test and to meet with the ENT doc and also while we're in Boston we made an appointment with her nutritionist since she's still losing weight.  I'm very anxious to find out if her hearing has gotten worse or stayed the same or what.  It feels like lately we've noticed a difference, but that could just be that we're looking for it.  On Thursday she gets admitted for her sleep study.  Hopefully thats all they'll do.  I'm looking forward to getting Kaylie back, and Alexa needs to get out of the hospital as soon as possible.  Next week she has her GJ tube change and that is so traumatic for her.  She gets that done every 6-8 weeks.  No fun... but better than every month like she used to get it done.

Alexa had the strangest thing start this weekend, which has been intermittent throughout the last couple of days.  All of a sudden her lower legs (below the knees ankles and feet) went completely limp like jello.  She couldnt stand up at all even with assistance.  It was like her feet just wouldnt cooperate with her.  This was terrifying for us and very frustrating for her who wanted to be able to play.  It was just so bizzare because after a while of rest she was able to use her legs again.  When it first happened I thought to myself oh no this is it... She's losing her ability to walk already.  She just started walking we need more time...

From one of her  prior sleep studies

How do we fight what we cant control?  I think I've been struggling with control issues lately.  I want so much to be able to make Alexa better, get answers, and get our lives back on track, but I cant.  This is proving to be one of the most difficult things about Alexa's medical issues.  Realizing my own limitations, and asking for help when it's needed.  Maybe our lives are on track they're just different than what we had planned and hoped for.  We're trying to live one day at a time, but sometimes its hard to do that.  I try to look at our future and it all seems so terrifying.  Sometimes it just feels so overwhelming and I feel like I'm missing something.  I try to keep everything straight, but I often find myself wondering did I forget to schedule this or am I still waiting on a call back by them, did I fill out that paperwork for that...and so on.  Sometimes I think I need a secretary just to keep everything in order.  It doesnt help when we have to call back some place 4-5 times before we can get a response.  I guess if those are the worse things about my day I really shouldnt complain. 

Lately we've been trying to figure out what to do with our house which has become a huge burden both financially and time wise.  We've done so much work on the house, and put so much money into it.  It seems like everytime we fix something, something else needs to be repaired. We just dont have the time or money right now to deal with these things.  The plan when we innitially bought our fixer upper in a good economy nearly 6 years ago was to fix it up and sell it in a few years to hopefully make a profit to put down on our next house.  As everyone knows the economy is in a decline, and we're now upside down on our mortgage.  We couldnt sell it if we wanted to.  Which we do.  So right now we're trying to figure out what to do with this.  We really would like to move closer to family as it's hard living out here with no support.  It feels like we're almost out of options.  We might try to do a short sale and just rent a house closer to family, but we'll

have to see.  We never thought we'd be in this situation, and it's depressing to think how much our lives have changed.  Everything feels so out of our control right now.