Saturday, July 11, 2009
For my sister
Thursday, July 9, 2009
Preemies to Preteens
We all lived through their birth (parents and twins) and so did the doctors...even the one that bore the brunt of Hubby's anxious-father-attitude. Eventually, those tiny babies came home. And then we were faced with the task of raising babies who did NOTHING by the book. I'll get into Pip Squeak's adventures another day. For now I'm going to share a little about the Sensory Integration Disorder that our Quatro displayed as soon as he entered the world and has slowly either outgrown or learned to deal with over the last twelve years...from Preemie to Preteen. It's my hope that those parents out there who are dealing with Sensory Issues for WHATEVER reason will see a light at the end of that long, dark tunnel.
That Scary, Noisy NICU
At birth, Quatro's nervous system wasn't fully developed. For this reason, even a light touch on his skin would cause him to stop breathing. He spent many, many days chilling out spread-eagle in the incubator while we sat and stared at him...because if we attempted to stroke him or touch him or heaven forbid HOLD him, he would freak! His heart rate would plummet, his breathing would cease and nurses would come running to pop open the top of his bed and thump the living daylights out of his frail little body. Of course, the nurses HAD to handle our child, and he had to listen to beeps, alarms, voices, respirators, and cries twenty-four hours a day. He coped with this over-stimulation by blocking it all out and sleeping like no baby of ours had ever slept before. All of this, it seems, was a precursor to his reaction to the world when we finally brought him home.

Baby Swings, Bouncy Seats and Mushy Foods
As Quatro was introduced to Life in the Real World, his sensory issues continued. Both of my twins stayed on heart rate/apnea monitors for many months, but for different reasons. We quickly found out that Quatro was NOT soothed by the rhythmic motion of the baby swing or the vibration of the bouncy seat. He was terrified! His body could not register the vestibular input it was receiving. He had no idea where his body was in space, so to speak, and therefore quick movements were frightening. Also, he didn't like the feeling of being undressed or wet. Baths were a nightmare. He craved pressure and swaddling and snuggly hugs. Never, ever scoop Baby Quatro up and hold him up in the air to blow a raspberry on his tummy! Don't rock too fast and finish his bath as fast as humanly possible. His first trip to the beach? Yeah, he slept on a beach towel every second...the wind took his breath away, the sand felt disgusting and the sound of the waves was too much for his ears. The world was an overwhelming place for our little fellow. We began Occupational Therapy around the age of 18 months.

Wearing His Coat and Hood ALL Day Long
As he grew into a small child and went to school, he continued to display his sensory behaviors. If he went to school zipped up in his coat, then he STAYED at school zipped up in his coat. No one could convince him to remove it no matter how warm it was in the building. Forcing him to take it off resulted in quiet tears as he felt rattled and confused. (Although the teachers thought this was cute, the other kids thought it was weird!) Taking him on outings with the family or even holding childhood rituals like birthday parties were events that had to be modified. The circus? Forget it. Crowds of people, weird smells, strange noises...too much! He would FALL ASLEEP as soon as we took our seats in the movie theater. It didn't matter that he was really excited to SEE the movie. He couldn't help it. During his own birthday party, he would retreat to our bedroom and hunker down under the covers until all the craziness was over. On the Fourth of July, he and I would stay in the house and turn up the tv to drown out the horrifying noises. Around this age he began to roll himself up in his comforter at night...like a burrito...in order to fall asleep. Without the pressure sensation, he would stay awake wiggling for hours. Also, foods were a problem. Different textures would cause him to gag. We learned how to "brush" him and do joint compressions. We brushed the inside of his mouth before he ate. We bought him a weighted vest. We went to therapy where he was put on platform swings, climbing walls, huge balls, ball pits, you name it, it was done. Slowly, he began to learn to cope with the overload of signals life threw his way.
Jumping Off Diving Boards and Riding on Skateboards
If you had told me five years ago that Quatro would spend his twelfth summer flipping off the diving board, swimming underwater like a fish, LIGHTING his own fireworks, mowing the lawn, going to parties and looking forward to our vacation at the beach, I would have called you insane! And yet, here we are. He's a healthy, well-adjusted boy on the verge of teenagerhood and although he's still a tiny bit quirky, he's mostly an average kid. Oh yes, he still makes himself into a human egg roll at night. But the child who wore a hood on his head to avoid the wind in his ears? Now he sleeps with a fan blowing gale-force breezes in his face! He still doesn't want to take a bath...but that's because he's too busy RIDING his MOVING skateboard DOWN a HILL than his sensory issues with water. He still prefers not to eat cheese...ever...but that has to do with taste, not texture. And he has absolutely atrocious handwriting, which I think IS still due to sensory things...he doesn't hold his pencil tightly enough or use a firm enough pressure on the page, but it's at least legible so I don't complain. Much. Really.
If you suspect your little one is suffering with sensory issues, please have it investigated by someone who knows what to look for. Children with SID don't want to find the world overbearing...they can't help it. A good therapy program can make a world of difference in your child's life. It's meant everything to Quatro.
Wednesday, July 8, 2009
Wednesday Prayer Meetin'
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
Dr. Park's office in St. Louis called Seth's mom last Friday. It seems that Dr. Park had spent most of the day reviewing Seth's medical records, MRI's, x-rays, therapy videos, etc. In looking through his records, Dr. Park has found that the extent of damage to Seth's brain is NOT all that bad. Yes, he has Cerebral Palsy, but the damage is less than that of about 90% of the patients that Dr. Park usually treats. (It's amazing to me how the human brain functions. I mean, some people have major trauma to the brain and they heal and recover normally, while others sustain a tiny little injury and it changes their lives forever.)
Anyway...this is the BEST PART:
The doctor feels that Seth should be WALKING within four months after his surgery!!
And yes, we sat at Jiu Jitsu and laughed and smiled like idiots as she shared this news. It's so exciting to think that sometime in the next several months this little boy will be up on his own two feet and playing like any other kid. God is so good.
Now we just have to get Seth to St. Louis!
Which means...that the fundraiser is vitally important!! Please go check out Scootin' For Seth, and make plans to stop by on July 25. There will be something for literally everyone! Darling Daughter has been selling raffle tickets like crazy...I think she sold her first hundred in less than four hours. But there are PLENTY more. If you want to help make a difference in this sweet little fellow's life, please get in touch with me. If you live nearby, I will BRING you some tickets.
And now on to this angelic face:
Landen will undergo HIS operation on Monday morning. His family seems more at peace with things this week, and they're so thankful for all of your prayers! They'll be leaving on Thursday afternoon to get out of town for a few days and just be together as a family. (So, Thursday will be the last time DD and I get our hands on this precious baby before he has his surgery!)

Please remember this darling face and pray for Landen this week.
Thanks for your support in sharing Landen's story and his button! I've been meaning to give credit to Tonggu Momma for creating the button for me! I have no clue how to do it myself, but she's good like that.
And I don't know what those sentences are yellow...but oh well.
Tuesday, July 7, 2009
The Dingbat Diaries, Boy Version, vol.3
And they're actually delving into Greek Mythology on their own.
Quatro had the book to himself one day this week and came to share the results of Percy's lastest battle with me. I asked him a few questions about other characters...
"Who was the god of the sky again??"
Zeus!
"And the war god? What was his name?"
Ares! (In the book he rides a motorcycle and carries weapons.)
"And the god of the underworld? The one who hates Percy's dad?"
HAZ-MAT!
Haz-Mat? Possibly he's been hanging around his dad and older brother too much this summer? I'm pretty sure Haz-Mat has more to do with dangerous materials and their recovery. Not Hades and the underworld.
Monday, July 6, 2009
Celebrating the Fourth



ice cold, juicy, sweet watermelon!!
The girls had stayed up until about 5 am the night before so I'm not really sure how they were STILL up at dark...but they were ready for some fireworks!

Darling Daughter even held a sparkler...without burning her fingers!!

We felt quite safe with three firemen on board. The Oldest did most of the firework-lighting, but this year Quatro convinced his dad that he was old enough to help. He actually did well and had fun, but let me just say...Pip Squeak...no fireworks. Ever. That boy is scary! Oldest handed him a Roman Candle and he proceeded to point it straight into the woods. Then turned around and aimed it at the truck! Then he went to light another one and LEANED DOWN over it while trying to light the fuse...no...not good. He'll be on the sidelines watching for a while yet!

It's a good thing we celebrated the Fourth of July on the Fourth and not the Fifth! We had great weather...a little warm, but not humid and a nice breeze. But the FIFTH! Storms, lightning, thunder, wind, torrential rain, limbs down, power out! Whew!
Well...I'm off to pack. Beach this weekend!
Which reminds me...anyone want to Lucy-sit next week??
Sunday, July 5, 2009
Disclaimer from a kid?
Anyway.
So Quatro had the soccer ball and was about to toss it at the Pip Squeak (whom he had already nailed right in the face many times...accidentally of course...and who had whined every time he had gotten hit.) He held the ball back over his head preparing to throw and shouted:
"I will NOT be held responsible for any phyiscal injuries or emotional trauma resulting from the outcome of this throw!"
Come again?
Whatever happened to "Heads up!" ???





