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better than normal



Here we hope you will find a very informative website on dealing with the issues of Infantile Spasms, Bilateral Perisylvian Polymicrogyria, Spastic Quadriplegic Cerebral Palsy and dealing emotionally and physically with a child who has special needs.



Updated: 2017-11-06T02:52:46.733-05:00

 



2014!

2014-09-29T16:59:22.771-04:00

Daniel continues to amaze me with how awesome he is.  Its been quite a while since we've used this blog, things have mainly been updated on Facebook.  I guess times change.  So I figured I'd do a quick update here. January 2014 Daniel was introduced to a group of people from The Chive.  Actually the Michigan Chive chapter have basically adopted Daniel!  They were able to raise money to help



Grand Rapids Bridge Run

2013-09-15T20:03:51.718-04:00

 Daniels first race and he loved it. And I love him to pieces.



Mobility Awareness Month 2013

2013-04-05T18:18:25.595-04:00

As many of you know, Daniel has had a rough time of things the past 6 or so months. A 7 year old kid should not have to go through many of these things. Yes, there are children out there who go through much worse than Daniel. I know this, and I feel their pain and their parents also. It is so sad to watch a child who normally has a smile that can make a sad person happy in an instant, to



My Theories

2012-10-11T16:06:12.199-04:00

Here are my possibly theories on why Daniel will not drink from a bottle since his hip surgery. I mean I should know right?  Since I've been medically trained!  HA HA  NOT! His throat is irritated from having the breathing tube shoved down his throat? Maybe it hit/pinched a nerve somewhere in the back of his throat? He normally has a lot of spasticity in his body.  Because he is casted on



Two Weeks Post Hip Surgery

2012-10-08T22:22:02.384-04:00

Ever do something for your child and midway through you have that thought of "Oh crap, maybe we did the wrong thing?"  Yea? That was me the first week after Daniel's surgery. FIRST..  MAJOR ..  SURGERY.  I was scared to death. I kept it together until they took him to the actually surgery room and then I felt like I was going to barf. I cried. I'm big enough to admit that I didn't



Remember us?

2012-09-05T17:14:44.919-04:00

wow!  talk about taking some time off eh?  Times are a changin'!  I use to blog all the time and well obviously as you can see from when the last post was, that isn't the case anymore.  I guess we just kind of got caught up in life and have been tootin' along trying to stay on track.  Making quick updates on Daniel's progress on facebook.  Truthfully I kind of miss keeping track here. So



Electronics

2012-02-04T21:55:00.527-05:00

Daniel loves anything to do with computers, televisions, computers, electronics, computers, portable DVD player, and his Casio keyboard. You get the idea I'm sure.He loves turning things on and off. His way of controlling things. A while back I believe I told you that we programmed a page on his ECO to change the channels for the TV. Its fun times when Daniel wants to watch a different program



Numbers....not his thing!

2012-02-02T14:16:30.746-05:00

We do a lot of 'teaching' at home. All of it really. Daniel does not attend public school-he is considered 'home bound' but does have the help of school district. Daniel gets tested just like everyone else and is doing really well, your typical 6 year old.  Typical also when it comes to showing what he likes and does not like!  Bring out anything with reading, the alphabet, letter sounds and



First CP support group

2012-01-30T12:13:46.969-05:00

We've been on yahoo support groups for various things; infantile spasms, epilepsy, cp moms, homeschooling special needs, special child exchange group.  They have all helped tremendously with questions we might have along the way.  I strong suggest looking into them if you haven't already. This weekend we attended our first (live and in person) support group.  It was arranged through our PMR head



Twenty Four days into 2012

2012-01-24T13:29:38.109-05:00

Wow, can't believe it is the end of January already! Time sure flies by when you have 800 things going on around you! Of course we still have all of Daniel's things going on, but there are TONS of other things going on too, and who knows where that will lead us! At the end of December I had all these grand hopes and thoughts of what was going to happen in 2012. Well day 24, and we are already



Cyclone Daniel

2012-01-21T19:42:05.773-05:00

The storm hits this house on a daily basis. No matter how much I try, it always ends up with toys and miscellaneous stuff spewed everywhere! EVERYWHERE!  Daniel continually tells me with the AAC device "Where's my money?" so we are slowly starting to work on money.  I think he's getting it because now he doesn't ask for coins, he was the bills! EVERYTHING comes out, we bounce from one toy to



Well Hey There!

2012-01-02T17:18:24.001-05:00

Talk about being busy for a little while!Figure I'd give a small update on whats been going on around here for the past few months. I have been sorely lacking in keeping this blog updated. Seems I go in spurts, although I have been updating on Facebook more often than anything.  Look me up over there if you're interested.  I still lead a somewhat boring life in the FB world too! :) So, Daniel



Hello Long Time Friend

2011-09-14T15:34:27.695-04:00

Its been a while eh? I think when we started this blog for Daniel is was to keep family and friends updated, then it kind of migrated into something that I used for my therapy.  It kept me sane, let me vent when people were not so nice, and kept me in contact with the other SNF (Special Needs Families).  I used it to keep up with Daniel's progress, and to hopefully help other families



June has just SUCKED

2011-06-30T11:38:58.885-04:00

Schools out and summer is suppose to be this glourious time, beautiful weather yada yada yada... June SUCKED, its plain and simple.Between me being sick and having surgery, recovering from the issues with that.  Daniel being sick, teething, doctors appointments and just not sleeping well.  Other peoples scheduled with the month of June....Therapies have almost been non existent. Speech WAS



May June Update

2011-06-20T09:52:55.261-04:00

Lets see if I know where to start to do updates Daniel is HUGE.  Well in my eyes anyways.  48" tall and 45-50 lbs  To me that is one big kid He just got Botox for the first time in both of his legs between the buttock and knee. 3 shots each leg (I believe a total of 125 was the dosage) and two shots in his left forearm to help with the bending in his wrist.  His hips look good...according to the



WINNER- My Baby Clothes Boutique

2011-05-22T19:05:43.413-04:00

And the winner per Random.org Winner is....(drum roll please) Katie Gvora said... I liked Baby Clothes Boutique on facebook Thursday, 12 May, 2011 Katie- Please contact me by May 24th 12:00 noon.  If I do not here from Katie by then, I will do random.org again to pick a new winner. Thanks Everyone for entering~



WE GOT IT!

2011-05-16T09:34:56.815-04:00

Well we camped out at the front door for a little over a week (actually a shorter period of time than I expected!) Then around 4 p.m. on Thursday Mr. Fed Ex guy came and knocked on our door!  Talk about jumping for joy.  I knew immediately what it was - Daniel just saw a box and figured it was for him because that's the way it usually goes so he was excited either way! But then when I opened it



UNIVERSAL EXERCISE UNIT

2011-05-11T13:25:50.336-04:00

I am so excited.  I found out recently that the facility where Daniel gets his PT/OT is getting the "Universal Exercise Unit" also known as the "cage"or "spider cage" I have been wanting to try this out with Daniel for so long but the cost of doing it was out of our reach at the time.  It involved having to go to a different therapist and facility and I just wasn't willing to do that.  So imagine



Special Fathers

2011-05-07T10:08:00.325-04:00

I am sure many of you that stop by hear have read this recently as it is going around our "groups". When I find things that hit close to home, I like to post them on here so years from now I can look back. I also look at them when I have having one of those hard days, weeks, months.... so take a minute to check it out.____________________________________________________________ Special Fathers



New Toy - ANYONE can use - DaGeDar

2011-05-06T18:41:35.779-04:00

As we all know, I am ALWAYS looking for toys that Daniel is able to play with, so you know where this is going to be leading.... Although Daniel may not be able to use it the way it was meant, I always look at toys and see how they can be adapted for the Special Needs kiddos. This one looks like it could be, mind you he would probably still need minimal help, but he could play along with the



Ride'em Cowboy!

2011-05-05T09:34:41.509-04:00

Three weeks ago Daniel started therapeutic riding at OATS. When I told people, some of them said "oh he'll love it", others said I was nuts.  He had sensory issues and tend to freak out on things - well crap wouldn't you too if a huge animal was coming at you?   WEEK ONE:  BEFORE WE GOT ON THE HORSE - LIFE WAS GOOD There was some screaming and crying when it was his time to get on the horse. 



My Baby Clothes Boutique Review & Giveaway-CLOSED

2011-05-22T18:54:06.708-04:00

I  have to say, I love Daniel to death.  He is an awesome little boy, but when it comes to finding cute clothes for him, I've just about given up.  I'm always looking for things that don't make him look like a baby, but also that are age appropriate. If you ask his sisters, I tend to dress him to young for his age. So imagine my excitement when I was asked to do a review for "My Baby Clothes



Goodbye ECO....for now

2011-04-27T09:52:56.179-04:00

Today is a big day. We ship off Daniel's ECO14 back to PRCThey will then modify his original AAC device to be able to handle the ECOpoint. I am so excited, I don't think I'll be able to wait the next few weeks for the modifications and upgrade. I want it NOW!! Let me rephrase that....I want it last year!!! But I cannot wait to post more of these types of videos like this one.And one of my all



Wonders Will Never Cease...

2011-04-24T12:26:10.478-04:00

After over a year of fighting the AAC battle with insurance we have WON!  I can't say THANK YOU enough to our SLP, and the others who helped along the way!! Can I hear a  Woot Woot? If you haven't followed or if perhaps I didn't post about it (very likely lately) - we have been trying to get Daniel the EyePoint for his ECO AAC device.  The upgrade came out within a couple months of us getting



Inspiration

2011-04-14T21:25:59.961-04:00

Although Daniel does not have Autism, he does have other hurdles to leap that are similar. When some people see Daniel, they first judge him because he is in a wheelchair, then because he is non-verbal. Many jump to the conclusion that he is mentally handicapped. In this case - they are judging him for his outward appearance. Many people won't give him to time to answer, or they don't talk "