This has been quite a week for us.  The election was not the turn out I was hoping for.  Outside of McCain not winning, I was more upset about Amendment 51 not passing.  That felt like a slap in the face.  Truly it did.  What it told me is that unless you live in the world of disability, or know someone really well who deals with it, you never really get it.

I spent part of my week going back and forth with the director of the Swallow Clinic at Children’s.  They are having to create a “special” test just for Hannah.  She made it sound like I should be so grateful for this and I am being a pain about the whole thing.  I could care less if it is special just for Hannah, do what you have to do.  Isn’t the job of the hospital to provide the best care for my child.  If you do not know I have some big issues with the radiology department at Children’s.  They have  not done their job well when it comes to Hannah and they have been quite patronizing to me.  So when the director of the Swallow Clinic told me I need to be more proactive during her tests I replied, “So what do I need to do?  Take for instance her last test, I kept telling them I thought they were doing the test wrong and they kept telling me that they knew what they were doing.  I asked them four times if they were doing what the doctor had ordered and they said Mrs. Nikkel let us do our job.  Well, the test was not done the way the doctor wanted it.  They got some results they needed but not all.”  To this the swallow clinic director told me “oh, I will try and get the right people to work with you.”  She didn’t like  dealing with our doc.  I smiled at this and thought “Way to go Dr. Hoffenberg.  His patients mean more to him then hospital policy!”  I really like Dr Hoffenberg. 

So then we find out that Littleton Public Schools is going to close Walker’s school.  This is so disheartening!  Walker has done so well at his school and really likes it.  Todd and I have been fighting this the last two months or so and now we are angry.  We are still pulling out the stops.  I don’t know if we will have any luck but I have to try.  I have called the news and am going to try and get in touch with some advocates and see what we can do.  It is not over yet.  I have even got a call from the School Board President.  So I will continue to dialogue with him and then work hard to get him off the school board.

Saturday our good friend Cindy came over with her son Micah and yes, the puppy Bousah.  Not sure how to spell the dogs name but I think I am close.  This was to reward Hannah for doing a great job with her sleep study.  That was fun!  All the kids played and it was a good break for all of us.  I think the puppy was a bit wiped out but hey, he’s a puppy.  Hannah was very upset when they left.  She really likes that puppy.  He is just her size!  We all needed a break and it was good just to sit and talk. 

So what’s up for this week.  I am hoping to hear something from Cincinnati Children’s.  I am moving forward with that.   I feel that Hannah is now compensating and is learning to deal with her issues.  I am afraid that she might thing this is how it is when people eat and I want her to enjoy food the way I do.  Love the taste and then let the body do the rest.  I have looked into free flights, insurance and the Ronald McDonald house.  Who know what we will qualify for.   Also I have a medicaid denial hearing.  Oh joy, I am hoping my advocate will pull this off without us having to appear before a judge.  We will see how that goes.  Then of course the ending of the LPS school closing.   Enough said on that.  The highlight of the week is Walker’s play performance!  That will be fun.  He has his line down and I am sure he will steal the show!

There you have it.  Just another week in the Nikkel house.  This is how it goes.  Oh I forgot to say that we should get Hannah’s sleep study results back and I am still waiting to hear back from a surgeon at Children’s.  Yep, it’s never ending.