April 25, 2011

Monday, April 25, 2011 3:30 PM, CDT

Helmet Day

On our way to get the helmet at 830am. Oh and today Lucas is 7 months old.  Yeah Lucas!
Long drive and crappy weather but we made it. Lucas, Ashton and I.
Lucas was a little trooper and didn't mind the helmet on and off. He did get fussy because he was hungry.
Well here we go. Today is 1 hour on and 1 hour off and no sleeping with the helmet.
He is very cute but still makes me so sad that he has to wear one. You just want your baby to be perfect in every way and not have to stray from the "normal".
Did a lot of running and I was so tired of sitting in the truck and driving all day long. Ashton was really good also.
Here is a photo of my little guy and his new hat.

April 23, 2011

Saturday, April 23, 2011 12:00 AM, CDT

This is what you find in Holland - Bad Hair

This is what you find in Holland - Bad Hair.  : )
WELCOME TO HOLLAND  I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

April 22, 2011

Friday, April 22, 2011 9:16 PM, CDT

Today is finally coming to an end

So we left the house today about 930am and drove in the pouring rain. YUCK. I didn't want to go all the way by KU but we were on the way.
It is about 1040 and I get a phone call. It happens to be the place we are getting the helmet from, Hangar. They called to tell me that the helmet did not come in today and the company just called them to tell them it didn't get out on the shipment to be delivered at the morning delivery. I just said are you kidding me. We have been driving about 1.5 hours in the rain and there is no helmet. Sorry is what they said but it will be in Monday. Ok gas is 3.69/gal and it is about 63 miles one way. Unbelievable.  So my next appt is 10am Monday. I have to call them at 830 to make sure it makes it but I won't get there on time. Oh well. I will get there when I get there.
So we went to Children's to get Lucas' blood draw to see what his TsH level is. This will determine if he will be on thyroid meds or not.  He was a trooper. The lady took us back and said she was a student and then got the other lady. They asked if the student could do it. I mentioned he had down syndrome and they decided against the student.  Down Syndrome causes the veins to be a hard stick.  He layed there and she put the rubber on his arm and he frowned and looked at her like you aren't making me smile and then he just started sucking on his lips and tongue. She found the vein easily this time and poked. He let out a small cry and then just puckered while the blood was filling the vile. When she took out the needle he cried again but only a second. He was a good boy.
Lucas Ashton and I decided to go to grandma and grandpa Hopkins to visit with them and his great grandma also. We had a good visit. Ashton got to play shuffleboard and played on a lap top.
Lucas played with everyone and was a great baby. He only has a small little bruise.
We dropped Ashton off with his dad and we came home.
What a day. Lucas was a happy boy and Ashton was a good boy too today.

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Friday, April 22, 2011 7:22 AM, CDT

Helmet Day

What a dreary day out. We didn't have to get up at 545am because of no school for Ashton. Lucas slept til 7am. The thunder woke me up.
Off to get us ready to go. After the helmet appt we have to go have Lucas' blood taken to find out if his last blood draw was a fluke. His thyroid is running low. It did at the beginning and then it was fine. Now it is low again.  Makes me so sad when he gets his blood taken.

April 21, 2011

Thursday, April 21, 2011 10:26 PM, CDT

Helmet Woes

Tomorrow we will be going to get Lucas' helmet. Lucas has Brachycelphy aka a flat head.
I have been told since he was about 3 months to not let him lay flat except at night. I didn't. Lucas is a great sleeper and has been since he was 2 weeks old. Sleeps all night. He was born with a flat head and it has gotten flatter but what could I do? I tried the repotioning. I held him a lot. I mean a lot just to keep his head up. I hate to hear people tell me to do this or that. I have done this and have done that. There is nothing more I can do.
I am little worried about this. I just don't like the stares already he gets and now there will be more. Hopefully we can be a learning tool so others will learn about why the helmets are used.
I did find out that the helmet will cost $2200 and of course I don't have that. Lucas has some wonderful angels in his life so 1/2 of the cost is taken care of. I can not thank them enough. There of course is an $1100 left to pay back. I am the type that hate to owe anyone so my prayers include this. I need a way.  My sister started a raffle to help.
Today Lucas was rolling around and got turned around and bumped his head on the dresser.  It broke his little heart and he cried, I picked him up and he had to keep "fake" crying after that. He sure knows how to get to me.
The last day his little head will just be out there for me to kiss on all the time.
Lucas is sleeping now. I better do that too, long day of driving tomorrow.
(there are more photos of his head in my photos)

April 17, 2011

Sunday, April 17, 2011 3:30 PM, CDT

Playtime

Playing at daddy's today Lucas was on a blanket on the floor with his playgym.  He decided to roll and the next thing I knew he was gone. I got up and seen where he went. He rolled into the kitchen and was stuck up next to the cabinet.
I asked him what was he doing. He just smiled and gave me one of his little yells as his whole body stiffened up.  So cute.
We had to call Daddy in to see what he had done.  New trick.

April 13, 2011

Wednesday, April 13, 2011 2:00 PM, CDT

Another Milestone

Today First Steps came for their monthly visit to work with Lucas. He is doing very well. He was showing off and was trying to roll over for them.  After she left we were playing on the floor and Lucas rolled over from his back to his belly!  This is just amazing for him. I will explain time and again to everyone that these little task for a typical baby are easy and come natural. A child with down syndrome have weaker muscles and so things involving muscles take a little longer and need to be worked with.
Well he started rolling and just keeps going.  He likes the new found freedom, sometimes.
Yeah Lucas!!!!!