lazy sunday

yesterday we headed up to stephenville for Harold's aunt's funeral, that place was a madhouse, at least 75 people! can you say YIKES? eesh. glad zachy got to stay back home with the nurse, definatly didnt want him in the heat and in the crowded room with people sniffling everywhere.

today has been kinda a catch up day and a prepare day...preparing for our trip to SA. very excited to get away, not really looking forward to spending the first 2 days in the hospital with the many tests/procedures but at the end of the day, it will be me zachy and his nurse. too bad dad couldnt be there, but we will get some good down time, and the hotel has a POOL!!! guess where we will be at night?? lol
Friday night Harold and the boys will drive up and join us and our nurse will head out, were hoping to hit Sea world with the boys and maybe Morgan's Wonderland for the boys too. excited. :)

curse of july 19th strikes again

3 years ago july 19th we went in for our routine ultrasound to find out the sex of our lil bundle and walked away with terms like "congenital diaphragmatic hernia" "termination" "50% odds" and more, our lives were turned upside down and we couldnt even see straight.
2 years ago on july 19th Zach had a seizure and was taken by ambulance to the ER where they flew him to the PICU in temple, they determined he had blood on his brain and would soon undergo a surgery to drain the blood from the brain.
last year on july 19th we skipped it...or so i thought, late that night zach started to not act right and had fever, the next day we made an appointment to see his primary doc and was told he had strep and enlarged adnoids.....
This year??? This year on this BLASTED date, we learn that the 1 week class Harold was suppose to be in is now 2 WEEKS, and runs thru the 30th, and there isnt a way out of the class, Zach is suppose to be in san antonio for a long 2 days of tests, xrays, lab work, mri, ct scan and meeting docs about the titanium rib placement....and now Harold CANT go, i was LIVID, freaked out, and more. i HATE this day. next year im removing it from the calendar...end of story. ugh

autism

The Sensory Challenge (In honor of Occupational Therapists and people with autism) Take the Sensory Challenge. Are you ready? Good. Close your eyes and imagine this: You’re in a room with a group of people. You’re trying to listen to the speaker but there is a buzz in your ears. It’s so loud you wonder if there’s a fly in your head. The lights in the room are continually flickering. You keep blinking to avoid the flashes. Now you have a headache. Open your eyes. How did you feel? What did the speaker say? This is the effect fluorescent lights have on some people with autism You’re watching a puppet show. There are people next to you, in front of you and behind you. The noise level is loud. There are people laughing all around you. One of the puppets has a shrill voice. It echoes in your head and you don’t understand what the puppets are saying. You try and filter out the sound but it’s impossible. You are continually startled as the audience breaks into applause, clapping and cheering wildly for no apparent reason. In desperation you cover your ears and squeeze your eyes shut hoping it will all just go away. Open your eyes. How did you feel? Did you enjoy the show? This is the effect typical noise levels might have on some people with autism. You’re at a BBQ. The sun is hot. The heat makes your skin prickle and the light is blinding. Your friends call you to play ball but there is a haze in front of your eyes. You try and push it away with your hands. Why can’t anybody else see it? The sound of insects is all around. You see them wherever you turn. They’re on the leaves, in the sky and on the grass. You should be eating but you feel nauseated. The air is permeated with the smell of food, drinks, lotion and smoke from the grill. It’s overpowering and all you can do is nibble on some chips. Open your eyes. How did you feel? Did you participate in the BBQ? This is how a summer day event can feel to someone who has autism You enjoy playing basketball but today you have to wear your team clothes. The socks are rough and they hurt your feet. With each step, the seam slides across your toes and it’s awfully painful. You’re on the court and you miss the ball. You didn’t see it because you were trying to reposition your shirt. The label on the inside feels like a jagged piece of paper that constantly grazes your skin. You can’t shoot the ball in the hoop because you’re rooted to the spot. Your shoes are so uncomfortable, you’re afraid to jump in fear of the painful landing that’s bound to happen. Your team is really mad at you. Open your eyes. How did you feel? Did you enjoy the game? This is the effect that some clothing can have on a person with autism. You like eating cereal. It’s crunchy and it tastes good. You like eating yogurt. It’s smooth and creamy. Oh no! Somebody wants you to combine them! They think you should mix it up and eat them together. The very thought of lumpy and smooth swirling around in your mouth makes you physically gag. At your request they leave it separate but still put them on the same plate! How could you possibly eat? You feel physically ill looking at the lumpy and smooth on your plate. It reminds you of… of… Oatmeal! The King of all lumpy, smooth mixtures. Your stomach is churning and you need to throw up. You close your eyes and pray that the plate in front of you will magically disappear. Open your eyes. How did you feel? Did you enjoy your breakfast? This is the effect that some foods can have on a person with autism.
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You’re at the mall. It’s a large wide open space where everything echoes. Your skin begins to tingle. There are sights and sounds everywhere. You don’t know where to look first. Your mind is reeling. You’re afraid and you feel exposed. You long for protection. You want to swaddle yourself in a blanket and pretend you’re in a cocoon. People whiz by. Their footsteps and chatter reverberate in your head. You lose sense of yourself and the space around you. You wonder if your feet are on the floor or if you’ve merged with the mall. In sheer terror, you retreat in the far corners of your mind – a safe place that never fails you. Open your eyes. How did you feel? Was the mall fun? This is the effect busy places might have on people with autism. If you have autism we respect and commend you for dealing so well with situations that can feel unbearable. If you're an occupational therapist, we honor you for the wonderful work you do in helping people with autism deal with sensory challenges.
- By Jene Aviram This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com

summer

wow, im sorry for the delay in updates. things are going pretty well here for now....holds breath. on day 3 post op of zach's adnoids and ear tubes he ran a 101.5 fever, really high for him, and was wheezing. we took him to the weekend clinic, got a new antibiotic and came home. yesterday was his last day on that antibiotic, after about day 4 of the new med he was feeling much better. seems like we dodged the bullet!

we had a nice fourth of july with some great friends, you may remember the posts about "snowflake" or "ladybug", we had a nice night of watching fireworks letting the older kids play and eating some yummy food. "snowflake" who is now more referred to as Julie-bug, is doing well also, she also just had almost identical surgery as Zach, on the 2nd, she also had her tonsils removed, and seems to be a champ!

Zach seems to be resting better, less snoring and mouth breathing, though they said it could take about 6 weeks for that to really stop due to swelling from surgery. seems like Zach is also hearing more, he is more alert to noises and turns to us talking to him some times. YEA!!

Mikey and Chance are getting ready to attend a 3 day summer camp, at a special needs camp (peaceable kingdom) from 8am to about 4pm on the 15th-17th, they went back in may for a 1 day camp and seemed to enjoy it, so hoping this time they still enjoy it. we go in a couple days to register and pick up their tshirts and turn their meds in for the camp.

last week mikey also became the proud owner of his pallet spacer, a big hunk of metal under the roof of his mouth conected to his teeth that we turn with a "key" 2 times a day to expand his upper jaw. he will be in this for about 6 months.
i will try to do better at updating hope everyone had a safe 4th of july!