Sunday, February 3, 2013

Time flies

There are many things I am not and a good blogger is one of them.  So much time has gone by.  Lets see, where to begin.  The last major update had Ember just starting to recover from  her elbow surgery.  I have had a lot of ups and downs since then. 
Recovery for her was hard.  I was regretting the decision to have the surgery.  She was (still is) required to be stretched several times per day, wear a splint at night that I'm supposed to tighten.  She was so sore for so long and would just cry and cry when I attempted to stretched.  It hurt me too.  I only want what is best.  Well, I gave up stretching mostly.  It was not worth it to have her begging me to stop.  The only thing I continued with was the nightly splinting.  So as a result of these things her elbow is not as bendy as it would maybe be if I had continued to stretch her hard.  BUT, it is much more bendy that before and she can now put her arm up on the table and reach her face to her hand to feed herself, scratch her face etc.  I can finally see the value from the surgery.  When we chose to adopt Ember we knew her diagnosis was arthrogryposis.  What we did not know was how she was affected or how severely.  I was unprepared for the pain I am supposed to put her through with all the stretching I'm supposed to do.  I continue to struggle with finding the right balance between quality of life vs. trying to get as much function and motion as possible.  The balance has shifted a lot.  At first I thought "no problem", I can stretch and know all the pain is worth it.  Now I still stretch but I keep her comfort and happiness much more in mind.
On our last trip to Philadelphia we brought home with us a marvelous walker called an "Up N Go".  Ember asks multiple times a day to walk in it.  We have seen her get so much stronger as a result.  She is just starting to cruise sideways along furniture.  This is HUGE for her.  Her confidence level has grown so much as well.  Also she can stand unsupported for a minute or 2.  She can take a couple steps if we hold her hands.  She is so remarkable!
Ember just started "school" in January.  It is actually special ed through the school system for about 2 hrs. a day and she attends with her sister Sienna.  She LOVES it.  School situation is starting to bring about other issues.  Right now I carry her into school and they carry her out after.  She has a gait trainer they use there for her to get around otherwise they pick her up and move her place to place.  I wonder if its time to consider a wheel chair.  It is hard to know how well she'll walk alone.  I am certain she will but how will her stamina be?  Or her speed?  Thinking about wheelchairs is daunting to say the least.  She can not use a manual chair alone.  Her arms lack any ability to propel herself.  But a power chair?!  That means a lift, access into the house, not to mention our insurance pays for something like 50% of medical equipment.  Power chairs are like $20,000.  Not a decision to make lightly for sure.  I just know I can't carry her to class forever, and she sure won't want to be pushed in a stroller forever! 
We take our next trip to Philadelphia in mid March.  I look forward and also dread these visits.  I love a treatment plan, I love to be proactive.  I hate having to make big decisions about her care.  I so want to make the "right" choice.  I also know the surgeon will likely scold me for not stretching as much as should. 
Ember also needs new ear tubes placed.  I am not sure when she'll get that done.  It is the start of the insurance year and we have a high deductible medical plan.  We pay full amount until like $4000.  We need to sit down and plan how and when we can cover that.  She seems to be hearing fine though so it might wait awhile.  Sienna's ears still have large holes in them that are not closing on their own.  We will have to decide if we want to get them fixed or leave them.  That might be a difficult choice.  She already has hearing loss and it is made worse with the holes.  But I don't know if repair is the right choice either. 

I can not imagine my life without these 2 girls.  They surprise me every day.  They have changed me dramatically.  Not all the changes are good :)  I am tired all.the.time.  I spend so much time going to/from therapy, the dr., making medical decisions, facing things like "special ed".  I also occasionally resent the loss of my "me" time.   Going out places with them is hard.  People look.  Sienna may act "down syndromey" sometimes.   Ember eats by putting her face to her plate.  It is hard to be "different".   I sometimes wish I could have the material things I am missing out on.  But that is so minor.  I am so blessed.  Sometimes I have to work to remind myself that but mostly I am so grateful the chance to parent these girls.  I have learned there is much more to life than a grand vacation, or having the latest clothes, etc.  Yes indeed I have a long ways to go, but with my girls as my teachers I will get there!