Saturday, January 31, 2009

Contacting Austin

There has been a lot of contact made with lawmakers and lobbyists in Austin.  They are in session and now is the time to get things moving on improving newborn screening in our state.  I spoke with Bill, Greyson's dad, about it a little this past week.  It turns out that the funds are just not there to support the cause.  While the support to pass these new requirements is there as far as yay, or neigh.

Money talks.  Money makes the world go round.  Apparently, money is what it is going to take to improve newborn screening, and lots of it.  It looks like the funds will have to come from "big" people with "big" money.  The funds aren't there on the state level.  So..... newborns will continue to be born here in Texas without being screened for 16 additional diseases.  

I met someone since starting the blog.  Her name is Carrie.  Her daughter Hannah is fighting for her life and has been diagnosed with Gaucher's Disease.  They live her in Texas also.  You can read her blog here.  Hannah is having to have extensive therapies, transfusions of different sorts, and tons of other things.  Her family doesn't qualify for assistance with the medical expenses.  Like most of us, they are not wealthy.  They are your average Americans who have worked hard all their lives.  A particular treatment Hannah will begin in a week or so, costs approx.  $30,000/yr. for infants and up to $250,000.00/yr. as an adult.  Where is the fairness in all of this?  Also, insurance has lifetime maximums.  Hannah will be meeting her maximum quickly.  What happens then?   

I don't get it.  I don't understand how price tags can be put on lives!  I think the biggest thing that amazes me... I have gone my entire life unaware of this nonsense.  My naivety was an understatement.  Becoming aware of all this craziness is so very scary.  My ideas of the world are ever so gradually changing as I see what is happening.  

Tuesday, January 27, 2009

A little bit of everything

Last week on top of my heart happenings, Bailee had her checkup with her cardiologist.  We received wonderful news and do not have to go back for a WHOLE year!  Woo hoo!  The appointment was very interesting to say the least.  Let's just suffice it to say..... they were thankful that Bailee was their last appointment for the day.  My precious angel was on a roll. She screamed bloody murder the entire time.  You would have thought they were pricking her with 1,000 needles.  Of course her blood pressure was up, along with her heart rate, and getting a good EKG was near impossible.  But it is over and done with, and we won't see them for another year!  

I recently found an SD card for my camera.  It had some pictures on it from May 2008.  I look at the pictures and can't believe how time has flown by.  Here are some of my favorites.

Brayden got his report card, and is doing great.  We still need to work on his handwriting.... he is such a boy.  

On the way to school this morning he informs me that he has been wanting to talk to me about something but that he was worried because he didn't want me upset and he was embarrassed. It seems, he has decided that it is time to get his little girl friend a necklace.  Yes, this is the same girl since the beginning of the year, and yes, it is the same girl he stole the pear for.  Of course my first reaction was...... heck no you aren't getting her a necklace.... you haven't even done that for mommy.  BUT, I bit my tongue and didn't.  I told him I wasn't sure about that and that we would see what daddy thought.  I also told him that I thought it was nice of him to want to give something like that to her.  

I don't know how I feel about it though..... I don't want to condone this whole girlfriend thing at such a young age, but then again, it isn't really that big of deal.  I just want him to be a kid, he will have tons of the girlfriend thing when he is older.  I am thinking that he can get a few dollars from his piggy bank and get her some little piece of jewelry.  Who knows?  I do think it is a little too early to be doing this stuff in Kindergarten!  I do know one thing..... Brayden is giving me grey hair.  

I took this picture of Bailee tonight.  Whenever I point the camera in her direction, she gives me this goofy smile.  It seems that just recently she has really grown, and that she no longer looks like a baby.  She is an absolute daddy's girl.  She is stuck to him like glue.  One minute she will be in the house wearing her little jewelry and the next minute she is at the barn with daddy in the sheep pens, wearing dirt.  

Monday, January 26, 2009

So rare.... yeah right.

A storm of emotions are brewing inside of me.  Anger, frustration, disbelief, deep sadness..... are what I am feeling tonight.

Today I found out that precious little Zoe from Arizona, passed away just after midnight, from Krabbe Disease.  Then I found out about another little girl in Arkansas who just turned 1. Harlee was diagnosed with Krabbe on December 15th.  

I don't understand it.  Why in the heck do these precious babies keep having to die.  Why in the heck can't ALL 50 states test for ALL diseases.  The capability is there.  

I am outraged.  I can't comprehend it.  I can't wrap my mind around it.

Go ahead, research Krabbe Disease on Google.  The thing you will see most often is how freaking rare this disease is.  REALLY?  Go tell that to Judson's mom, Greyson's mom, Zoe's mom, Harlee's mom, and the hundreds of other mothers out there who has or had a child diagnosed with Krabbe Disease.  Yeah, it is extremely rare..... 

I sit here, tears rolling down my face, rolling my eyes, in disbelief.  How could such a cruel disease be allowed to continue to attack our precious children?  

This is why we will continue to fight.

Thursday, January 22, 2009

Calgon take me away!

What a night.... Many of you are parents, so I am sure you can relate.... but I am so frustrated and upset right now I could SCREAM!

It all started with a new pair of shoes. I bought Brayden some new tennis shoes today, thinking I would surprise him. Well...... he tried them on and immediately said they didn't fit. He couldn't decide whether they were too big or too small. Mind you, they seemed to fit perfectly. I just don't think he had the heart to tell me he didn't care for the ones I picked out.

So I decided we would run in real quick and exchange them. Bailee was in my arms.... and boy is she heavy. So we trudged in to the store. As we get to the shoe department I go to the original shoes..... Brayden on the other hand, was browsing the other styles. Call me a bit conservative, but I am very picky in what shoes he wears. Brayden so badly wants the skater type shoes because they are "cool". Daddy and I don't care for them (sorry if you do) and we choose to not allow him to wear that style. Well....... he had in mind that he had to get these high top Nike's that were black, yellow, and white. They were basketball shoes. Not only were they ugly (so I thought) but they were $50.00. The original shoes I had purchased were $20.00 cheaper. Besides, I am paying for them.... I have a right to approve, right?

Well, as soon as I inform him those were off limits and he could choose one of these (as I held up THREE different pairs of Nike's), he continued to be defiant. Well..... he didn't see things my way and before I knew it we were in an all out battle. My son became someone I didn't know...... he began REFUSING to put the shoes up, held on to them with white knuckles, and begins crying, and at times was making this horrible grunting and growling sound.

I am holding Bailee who at this point is getting upset because she hates it when her brother cries. There was nothing I could do to get my son to put the shoes back, much less out of the shoe department. I decide to start for the front of the store, I get all the way there and turn around and he is in the middle of the aisle with the box of shoes. He is continuing to refuse to put down the shoes. (I am wondering at this point, what I can get away with, without having CPS called on me). There was no forcing him to put down the shoes. I told him that if he continued to walk out of the store with them, it was stealing, because there was no way he was getting those shoes or any others with the way he was acting. I threaten to call his Grammy to let her know how he is acting and he throws down the shoes and says fine (very loudly). I probably should have left then, but I was not going to make someone else put back the shoes because my son was throwing a fit. We get back to the shoe department to put the shoes on the shelf and BINGO we are back to square one. In hind sight, we should have left the shoes where he threw them down.

I literally looked around the store, praying I would see someone I knew that could hold Bailee while I either took Brayden to the restroom to solve this, or so I could drag his butt to the car. No one was around. Next thing I hear is, "Are we having problems here?"..... I turn around and see my sister in law, Aunt Shelley! I think she could see the frustration on my face and knew it wasn't a good situation. She took Brayden to the side, as I left for a second time to the front of the store, with Bailee in tow. Within seconds she comes walking up with Brayden who is still crying, but he doesn't have the shoes with him at this point.... THANK GOODNESS!

I let him have it while we drove home. I don't think I have ever been so upset with my son. I can promise you this..... he won't be getting any new shoes for quite a while.

While I love my little man with all my heart....... I could wring his neck sometimes! This was so out of character for him. I do have to admit though, we have been having a heck of a time since he has turned 6, with his attitude. I just don't know what to do about it. It worries me to see such a change in him. I think after we both have a good night's sleep, things will be better in the morning.

I owe a HUGE thank you to Aunt Shelley for diffusing the situation. I am sure the store clerks thank you also, and I can assure you Brayden would thank you if he would have known what was in store for him. I seriously thought, that we would be in there until it closed.

Of course, this would all happen when daddy is out of town! Well, my dear friend Julie sent me a basket full of all these relaxation goodies. I am going to go put them to good use! Adios!

Wednesday, January 21, 2009

32 and chest pains.... are you kidding me!

Originally I started this post and when I was finally done with it, it was extremely long and boring.  Bottom line is this..... had chest pains, went to doctor(s), have abnormal amount of fluid surrounding my heart, lots of blood work and tests, tons of needles, will be closely monitored, will be fine, scary crap!  

Wow... that is way shorter than my original boring post.  

Anyways...... today's lesson is this.... don't ignore ANY slight chest pains you may have. Don't push it aside.  Have it checked out.  

Love this fellow blogger!

I have been following a fellow blogger for quite some time now.  I love everything about her blog. She is a fabulous photographer and takes amazing pictures of her kiddos.  I just read a post of hers that had me laughing out loud.  I had to share it.  Check it out!

Tuesday, January 20, 2009

Physical Description.....

Well, I had a visit with my general practitioner today for some medical things I am going through (more on that another time).  I am in the process of seeing different doctors and specialists.  

Now mind you.......  my lovely GP whom I adore.... and is a very nice looking man I must add, and I enjoy seeing..... handed me a sealed envelope that was to be given to the specialist I am seeing tomorrow.  Of course I am interested in what all was included in this sealed envelope..... so I looked....  I read.... and here is what it said on physical exam remarks.....

Physically........  well developed, stocky, obese, well groomed........  

ARE YOU FREAKING KIDDING ME!  STOCKY AND OBESE!  UNBELIEVABLE!  So this doctor that I have grown to just love to pieces.... thinks I am stocky and obese.....  off the pedestal he goes!  

Mind you, I have lost 15 pounds.......  what did he put down before I lost weight.... morbidly obese probably.....  Just FYI......  I am 5'4 and 150 pounds......  not skinny, just nice and fluffy.... but obese according to the medical profession.....  No wonder the obesity stats are so high in this country...... they are horribly exaggerated!

I was with my mother when I was reading the paperwork and was beside myself when I read the description.......  next thing I know, my mom and I are laughing like crazy, and giggling like two little girls! 

Sunday, January 18, 2009

The Love of Humanity.

Our capacity of love, is amazing. As human beings, we band together and support each other when it is needed. While I wish tough times would not fall on any of us..... they do. It is the support and love of others though, that will see us through.

Through Greyson's death, I continue to be amazed at the out pouring of love from all, including complete strangers. The fundraiser yesterday was another reminder of how many people Grey continues to touch. It was a huge success! It was amazing to see the amount of people there. It was awesome! When I think about all the people that pulled together to pull of this fundraiser..... my heart smiles.

There was a woman from San Antonio there with her two kids. She is a follower of Nicole's blog. To know, that she felt compelled to be there, is incredible. During the event, I found myself taking a step back and watching the crowd. There weren't words to describe the feelings I had.

I know the word is spreading, I know we will improve newborn screening here in Texas. I had proof of that yesterday. After the fundraiser, Brayden's friend Riley, who is also one of Grey's older brother's, came home with us. I needed to run to Kohls to get a picture frame, needless to say.... the two boys were not thrilled at all, and both made sure to let me know that they did not like Kohls.

As we were in line to check out, they started talking to a lady waiting behind us. They went on and on about how they are in the same class, and that they were spending the night together and were so excited about it. Out of nowhere, Riley says, I lost my brother, but he is in a better place. Tears immediately came to my eyes. You can only imagine the look on her face also. I turned to her, and briefly said...... (the lobbyist was coming out in me) yes, he did, Grey was 11 months old and died of Krabbe Disease. Can you believe..... it could have been screened for and very likely treated, but Texas does not screen for it! The lady's face immediately lit up and she said..... Oh, my goodness, I heard about his family, and saw them on the news! That is horrible, and we have to change screening here in Texas!

There you have it....... proof our message is spreading......

Thursday, January 15, 2009

Another article about Greyson......

I found another wonderful article about Greyson Morris.  Check it out here.

Greyson Morris Made The News!

One huge leap has just been accomplished in our fight against Krabbe Disease.  Today our local paper had a great article about Greyson and his family, read it here.  And then tonight, Greyson's parents were featured on News 4 WOAI here in San Antonio.  Today was a huge day!  The word is out, and Greyson continues to touch lives. The number of individuals that now know about Krabbe Disease has multiplied, here in our area. See the following link here for the story and video!

Tuesday, January 13, 2009

Facebook..... a different planet

Facebook...... yes, I finally took the plunge into the abyss. I have connected with people I haven't talked to in 17 years. I don't know what the heck I am doing, but it is fun. I love catching up on others. It is great to have a central location where you can go and catch up. The problem I foresee is this...... staying up too late and not getting to bed when I should. There are so many extra things to Facebook that I am unsure of. I don't know the ropes. I am learning though.

You know when you were a child, adults seemed like dinosaurs that just didn't have a clue to what was in or what was the norm..... well I officially feel like one of those dinosaurs. It is funny to look around and see how fast you can fall behind on the latest and greatest technology. I had always considered myself to be a technology buff. I no longer feel so buffy.

So do any of you use Facebook? What do you think? Is it as addicting as I can see it becoming for me? Check my Facebook page out..... I am under Misti Gibson Dunlap..... until next time.... Adios!

Saturday, January 10, 2009

Greyson Morris Benefit

Please visit the link for information on an upcoming benefit for the family of Greyson Morris. 

For information on this precious angel and the courageous battle he fought with such a horrible disease, see my previous post titled Life is short.

Wednesday, January 7, 2009

Our Trip To The Zoo

On Saturday we woke up and headed to the San Antonio Zoo.  We had a wonderful time!  It looked very dreary out.  It turned out to be great though.  It wasn't too hot or too cold.  It was just right!  The kids absolutely loved seeing all the animals.  Bailee was so funny.  Daddy and I were both surprised at how animated she was when she would see the animals.  At one point..... we were able to go into this bird area where you hold cups of nectar and feed the birds.  At first it didn't seem as though the birds were hungry.  My observant husband, watched the zoo employee and how he held his nectar cup and before we 
it, Justin had a bird on his hand, then it moved to his shoulder, and then finally his head.  I would totally be lying if I said I didn't pray that the darn bird would poo on his head.  It did bite daddy though, when Justin tried to get him off.  It was pretty darn funny.  I haven't seen Justin laugh like that in a while.  It was great to see him carefree and enjoying the family time.

Our Baby Is a Little Lady

I can't believe how fast time flies!  It seems like I turned away for a split second and when I turned back, my little baby is no longer a baby.  My wrinkly little caterpillar has turned into a beautiful butterfly.  And let me tell you...... my little butterfly is really trying to spread those wings of hers. Bailee is turning into such a sweet little girl.  Her personality is blossoming.  Everyday she is doing something different.  Her favorite thing to do lately is sing.
She sure can carry a tune too!  
I remember how much I loved this age with Brayden.  They are discovering the world
around them and the tiniest things amuse them so.  The innocence of childhood shines brightly at this age.  The other day she was in the
garage with daddy and her brother.  She was on her little ride on car and she has a tendency to dive off of it when she is done.  Well this time, she scraped her face on the cement when she was getting off.  Originally it was her forehead that we were worried about.  When we got her out of her crib the next morning, it was obvious that we should have been more worried about her nose. Ouch!

Thursday, January 1, 2009

What a great Christmas break!

Christmas break officially ends Sunday.  Back to going to bed early, getting up early, and heading off to school.  Monday is coming quick!  I have enjoyed this Christmas break so very much!  Justin has made it a point to be home more often and I am so thankful for that.  We have really enjoyed our family time together.  I find myself thinking..... yeah, I could get used to being a stay at home mom.  I hear that it is suppose to be cold and wet Monday morning.  I am NOT looking forward to getting out in that kind of weather.  I find myself counting the days.... How many more mornings of sleeping in till 8:00 or so, do I have left?  

Bailee is changing everyday.  She is talking more and more.  She has been saying "moe" a lot lately and it wasn't until last night that found out it isn't more she is saying, it is no..... but comes out as "moe".  I was trying to get her out of the bathtub last night and when I asked her if she was ready to get out......  she shook her head and said "moe".  It was too funny. The differences between boys and girls amazes me.  It is so evident at such an early age.  Everything Bailee picks up, she makes into a phone.  It is so funny because when Brayden was her age, he made everything a car...... or yes..... a gun..... 

Brayden misses school but I know he has really enjoyed the family time.  He is doing so good. He is really trying to test the waters with his mouth though, if you know what I mean.  

Last night for New Year's we were invited over for dinner at a friend's house.  We had a great time with them.  We were home by 10:00.  Justin and I both wanted to be home well before the inebriated drivers were on the road.  We celebrated in the best way possible.... we all changed into our jammies and climbed into mommy and daddy's bed.  It was so wonderful.  We all snuggled and wrestled and had the best time.  I looked over at Justin and said...... this is the best way to bring in the New Year, and he agreed.  Of course, none of us saw the new year in. We were in a deep slumber by midnight. 

I can't wait!  Tomorrow we are off to the zoo!  I will post those adventures soon!  

Who Knew? Update Version..... Please pass it on.