Friday, January 7, 2011

You can avoid having ulcers by adapting to the situation: If you fall in the mud puddle, check your pockets for fish. ~Author Unknown

It is 6:05am on January 7th, 2011 and I just got the results of a pregnancy test that I took yesterday and it said:  POSITIVE!

Guess we will be expecting a new little person!

Thursday, January 6, 2011

Physical Therapy?

In 2006 I was told that my daughter could get some additional help from an organization called CCS.  Based on the fact that she has ATAXIA, it is almost a given.  When I filled out the application and mailed it in, I received a letter that said she was DENIED services.  Their reason for denying her was due to the fact that she was only on 1 medication to control her seizures!  ARE YOU SERIOUS?  She was denied because they said that she wasn't SICK ENOUGH.....They never even mentioned the Ataxia.  After I started to discuss the situation with other moms and some teachers, I found out that maybe I didn't stress the "right" stuff on the application I filled out.  I really don't understand that reason though.  IF A CHILD NEEDS therapy, why in the world would you make all of this red tape?

WELL, now we are in 2010 (well really we just started 2011, but in October of 2010) I was FORCED to apply for CCS again, by another organization that doesn't want to pay for our therapy any longer.  I almost had my application walked-thru the system, and it was approved. HMMMM, what exactly does that mean?  I didn't have enough connections in 2006? 

After months of waiting to see if we were going to get additional services, I found out that we were approved for Physical Therapy 1x/wk.  WOW, for as much as I am griping, I really am happy that my daughter gets the services she needs.  BUT SHE NEEDED THEM 4 YEARS AGO, as much as she needs them now! 

I guess that is really my problem.  NO ONE has ever told me that she doesn't NEED therapy, they just tell me that they won't pay for it.  SO FRUSTRATING.  THESE ARE CHILDREN!  Stop paying for people to leach off of the system and take care of the people who need it most.

Why, as parents of special needs children, do we have to work so diligently to get the help we need? Why can't someone other than us, have our children's best interest at heart? 


Wednesday, January 5, 2011

The toxins I put into my little one

Yesterday, I was having a discussion with a family member about medications that I give my daughter.  It was sparked, because this person is about to have a major surgery and had a meeting yesterday where she had to bring ALL of her medications to the meeting (this is probably the 5th time she has had to do this in about a week).  In the discussion, after I listened to her complain about it for a little while, I told her my thoughts. 

The doctors do this for a reason, NO I am not a doctor, but I can give you my best educated guess about why they do it.  First, check and double check....I am sure that they don't want any surprises about what you are taking and to the average person, there are probably only a couple of meds.  But, to some, there is a laundry list of stuff they take.  This family member takes about 15 medications A DAY.  The Doctors want to be SURE, you told them about everything......

But, while having this discussion, I brought up a recent news article I saw on 60 Minutes about GSK, one of the LARGEST pharmaceutical manufacturers in the world.  They had some major problems, FOR MANY MONTHS, making and mislabeling medications.  They told the story of a little boy that was taking a 10MG medication and one month the pill color changed (but the bottle information didn't) and the next month the pill color changed back....come to find out, he was taking a pill that was 25MG for a whole month! For a child that is serious concern....

My daughter takes medications to control (or not control, because they aren't working very well right now) her seizures.  She takes anywhere from 2-4 medications 2x per day.  On December 5th we changed from one medication to a new one, but this new one is not working properly (and it is making my daughter a walking ZOMBIE) SO, we are changing to yet another new one. 

WHAT IF, she was given the wrong dosage for her new medication....I would NEVER know.  That is so scary.  I try my best to stay on top of her medications, but I am not an expert, I AM ONLY A MOM.  Some days I wish I had super powers.

If I think about the meds I have given over the past few years, it is downright nerve wracking.  I gave a medication to my NEW BORN baby that was 14% alcohol....I gave my toddler a medication that literally stopped her from sweating, she couldn't regulate her own body temperature.  I had to carry around a squirt bottle to keep her cool on hot days.  I am taking her off a medication that causes LIVER damage (this is one that my husband is particularly scared of).  I am putting her on a new one that causes SEVERE RASH if you go on or off the med to fast.  It is so severe, that it will take 7 WEEKS to finally get her fully on the new medication, by the way, this NEW MEDICATION IS MANUFACTURED BY GSK...OH and did I tell you the one that we are coming off of causes liver damage (almost for certain) if you take 3 seizure medications at the same time?  Right now she is taking 2, tomorrow she will be taking 3 (for the next 7 weeks, until she is fully off the old one and on the new one)...

BUT, the alternative is mounds and mounds of seizures, more than the 20-30 we see right now....SO, I have to give her these poisons and hope for the best.  I have to pray that her body can handle the medication and pray that I will be able to tell if something goes wrong.  Doesn't that seem like a lot of pressure? 


Tuesday, January 4, 2011

Happy New Year

It is the beginning of another year and I have been thinking about some of my past posts....I LOVE reading them.  I love reading the funny ones, the happy ones, and I really LOVE reading the sad ones.  No, not because I enjoy being sad, but it reminds me that things aren't hard all of the time, just sometimes.  It reminds me that there are struggles and then there are triumphs.  Mostly I love reading the posts about things that I have forgotten, because we all know that I am not getting any younger and my memory isn't the greatest.  Life goes so fast that most of the time I can't even remember the beginning of the day by the end of the day, LOL.

I am going to try really hard this year to journal more.  I think it is important for ME to be able to look back and remember where I have been, in order to see how far we have come.