Thursday, September 27, 2012

How Things Change

Anna's weight never picked up like we had hoped so at the advice of the GI we had Anna's feeding tube put back in last Friday.  She did well with the procedure and we came home the next day.  She was very sore and still is just a bit, but otherwise all went well.  She is tolerating her feedings better than I ever could have imagined after the way things were last time.  She calls it her belly button and every night at bedtime she says, "You gonna hook me up?"  It is cute to hear her say that.  She still is totally underwhelmed with the button but I actually am glad to have it back, sort of.  As we head into flu season and just overall sick season it will be nice to have the guarantee of fluids and calories despite illness.  I know she will gain and grow in strength with this and so we are OK with it.

Another change is in my emotions.  Not too many posts ago I had posted about all of Anna's neuropsych testing.  Yes, some of it is true but most of it, in my opinion, is crap.  My child does not have borderline intelligence.  She is smarter than anyone gives her credit for, even me.  She is so witty all of the time and witt requires intelligence.  Have you ever met a witty dumb person?  Yeah, me either.  She is doing so well in school and I could not be happier with her progress in all areas.  She is also in tumbling now and amazes me there too.  I think the sadness about all that happened to her will always come and go but I must always remember her true potential cannot ever be measured by tests and numbers. 

We have started a fund raising page for Anna.  We have tried very hard to never ask for nay help but our resources are getting spread thinner and thinner.  We do have insurance but it does not cover deductibles, copays, time away from work (and I am always out of vacation time), gas to and from appointments, etc.  We do not qualify for any state or federally funded programs except for the medicaid waiver program and we are on the waiting list but it is about 5-7 years long.  I do not want to depend on others but I am swallowing my pride this time.  So if you feel like it and you are able please think about making a donation to Ann's fund.  If you want to support us but cannot afford to then please just spread the link.  That will also help us in ways you can't imagine.  Here is the link:

Carly and Gabe are doing well also.  Carly's progress in school never ceases to amaze me.  She is also learning a lot of life lessons this year which are far harder than the educational ones.  She is learning what it means to have some tolerance.  She is learning how to deal with people who consider her sister "gross" and do not want to be around her.  She is such a sweet child and I love her so very much.  I am so proud of the little lady she is becoming!  Gabe, oh my little Gabe.  He is chattering constantly and although we can't understand much of it one word is crystal clear- EAT.  He says it all of the time and he means it too.  He is growing up too fast but the other night Kenneth and I were remarking that we are beginning to see a light at the end of the tunnel (the baby tunnel) where someday in the not too distant future we will not have to be chasing a baby around the house.  Of course we will miss the baby days a bit but we look forward to the kids gaining more independence (and us gaining more sleep, naps, and time away together.)

1 comment:

  1. Don't let anyone tell you that your child isn't intelligent when you know otherwise! I just came across your blog and love the Holland analogy to disability. Being different doesn't mean being worse! If you ever are in need of medical or legal advice, or you just want to get involved in the CP community, check out Cerebral Palsy Family Network. It's a great resource sharing CP stories from all walks of life!