Easter! Picture Overload!

I can't let this day go by without sharing the fun we've had this weekend. The evenings have been so terrific here and Parker loves to be outside, so we spend lots of time playing outside in between swimming, gymnastics, and baseball. Have to get that in before the heat is too much..the days have hit 90's already and the mosquitos are in full force, the pics show the nasty bites on his legs and arms already! I'm afraid he has his mom's skin, poor baby! This past week I made two road trips, to Dallas and Austin, so I feel "cheated" out of days! Next week we have a "lighter" week, only one "new" specialist to see..a pediatric urologist..working on a sleep study the following week..in addition to Dallas for our ND 3 month eval we saw the ENT and Parker's ears continue to be fantastic! No problems with congestion or ear infections, we are so blessed! Our ENT wants to know how we keep him so healthy and doing so well! I met a Mom of a 4 yr old little girl with DS in the waiting room. She kept watching him play with the cars (zoom, zoom,zoom he says) and him talking to the other children interacting and having fun. She came over and gave me a perplexed look, then said, "you don't use ECI do you?" hmmmm...no...my heart ached for her, her little girl wasn't verbal at all and she was really in her own world almost fearful of the kids. Please don;t misunderstand me, ECI probably has some terrific folks and programs, it just didn't work for our family. Parker went over to play with her, but she got up and hid with her Mom. I am reminded by those encounters that we have so much to be thankful for and often when I decide to throw a pity party for me, God gives me those encounters!

So, egg hunting is a new favorite..maybe next year we will put them in the basket instead of throwing them and saying "ball" The pics tell the story, "Mom why are they so yucky when I throw them?" The confetti eggs were more fun to put our fingers in and really the new favorite thing is our pool (pants are off because we sat in pool). Guess we will have to add swim lessons this year. Parker loves to be in the water, now he can put his face in and blow bubbles. Good thing we still have the pool gate...

Praising God for his blessings, especially this Easter Sunday! 1 Peter 1:2-5"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time."

Yes, I am surprised to learn they still make 'PEEPS" I have been told they really are terrific and now they come in chocolate flavor now...YUCK! Give me black jellybeans and dark chocolate eggs anyday! :)

A Birthday Wish

tomorrow is my birthday...I'm not in the habit of asking for birthday gifts, but this year God placed it on my heart to "wish" for something very important! The third annual Changing Minds Butterfly Flutter By... is coming up on May 15, 2011. That day 1,000 Painted Lady Butterflies will be released for a beautiful mass flight. The transformation of the caterpillar and the butterfly to our children with Down syndrome is a wonderful representation that with treatment our children are experiencing the freedom from the limitations of Down syndrome. All funds go to expand awareness of the need for research to treat Down syndrome. There are some exciting clinical trials happening NOW, but the National Institutes of Health(NIH) says that we "are not concerned" about our children and they place their research dollars in other areas. The amount spent per child with DS is appalling, $24 per child with DS as opposed to $3000.00 per child in other areas. We are being passed over for critical research dollars because the NIH believes we just "don't care about helping our kids." To become an active voice for our children we have to become more vocal and raise funds for this very important investment in our children's future. We know more about the genetic makeup of Down syndrome than any other syndrome yet we are the furthest behind in helping our children. I have personally committed to raise $1,000.00 for this event.

Each butterfly is $21.00, you can make a donation online thru paypal by following this link, http://www.changingmindsfoundation.org/documents/fundraiser.html

or send a check to: Changing Minds Foundation 1714 Surrey Court Richmond, TX 77406

Please consider making a donation to help further Parker's future. Our goal is to give him the freedoms we all want and so richly deserve. It is possible for children with Down syndrome to achieve, we believe!

If you are in Houston, please come and join us at this wonderful family event. There will be lots of fellowship with other families and the release of the butterflies is something to be seen! God's creation taking flight!

My Montage 4/8/11 at OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

Slow but steady wins the race

as usual Parker always does things his own way...and Mom must learn it is HIS way, however unique...what I have humbly learned is that while most typical kids just walk once they start and throw crawling aside, Parker still prefers to crosspattern crawl with walking here and there. Interestingly enough he is more motivated to walk around other kids his age (continuing to support my theory that kids with DS need typical models at this stage rather than a school of DS kids). He is the master of creativity...since our weather has been so hot already we stopped wearing pants...he doesn't like scraping his knees on the concrete so in between walking he started bear crawling! In the house he doesn't bear crawl, so he's figured out when it is appropriate! I am reminded that "slow and steady wins the race"

Make an on-line slideshow at www.OneTrueMedia.com

more steps.....

I edited the longer clip, VERY dark, I deleted the commentary..this is for the relatives to see! I will work on better quality I promise! Watch closely the 4-5steps are the darkest (or course) and happen close to the beginning. Shows you how determined Parker is!!

I fixed yesterday's videos too, this is what happens when you don't "check your work" LOL.

Make photo slide shows at www.OneTrueMedia.com

Baby Steps

it has been a BIG few weeks in our house!!! I haven't had time to post, but here are our MAJOR milestones!! STRAW drinking!! And I don't mean a sip, we can do an entire cup with no issues!! As many of you will remember this has been a challenge, Parker has been able to straw drink since 14months, but would only take 1-2 sips and then spit the liquids out. We tried every technique, had eval after eval to only be told he had no issues with his lip closure, tongue thrust, or swallowing, just that he was "stubborn." Gee, why am I not surprised? But, a few weeks ago when presented he drank the drink in its entirety!! Talk about the joy of the small things...we never used bottles w/Parker, so this is BIG! Let's just say we love the new independence! Bigger news....he's walking!!! Each day we make strides and we aren't perfect by any means, but it is walking! This clip is of last week when he started standing up everywhere unassisted. It was funny, when I first noticed him doing it, I was cooking in the kitchen, he was behind me practicing over and over again. He only takes one step in the clip , but trying to get a video is next to impossible! I have a 3minute one with 6 steps, but the commentary is typical of our crazy household and the color terrible. I will work towards a better internet worthy video for the masses. Again, who knew this would take 8 long months!! He began pulling up at 14months and started cruising shortly after. Everyone knows we have pushed cross pattern crawling with him for brain organization, but let's admit it, it is hard when all people do is ask if he's walking! WHEW!!! What is interesting is he went from one step to multiple steps, so it seems now that he's "got it" he will move quickly into a full on run (we hope or not)! clip 2 shows how fast he can crawl, no wonder the child has taken so long to walk, he's speedy! People always comment on how FAST he is! And I really don't think Mallory meant to hit him w/the ball, but listen to Parker laugh when she does!

Parker had the privilege of doing a photo shoot for a photographer trying to take her photos of DS kids National. Here is his premier. He is also being used in the DSRTF direct mail piece for fundraising. That I will save for another post, they are doing some fantastic things to raise funds for DS cognitive research, if you haven't already, go to their site and get connected. www.dsrtf.org All for now,

Photo and video editing at www.OneTrueMedia.com

No wonder the days seem so short..

This post isn't to complain, nor is it to make people feel sorry for us...I keep feeling like I don't have a minute to myself and the days are over before they begin. So I sat down to figure out where I am going wrong...I'm in a quest to shed our lives of the unnecessary and be sure the priorities get completed each day. Here is a snapshot of the last two weeks, interestingly I could take any 2 weeks and they'd look the same..all of these appts are for Parker ONLY..

6 visits to therapy - 1 hour appts, 40-50 minute commute roundtrip
8 visits to Drs - specialists, pedi, holistic MDs, naturopaths, osteopath-average length of visit - 1.5 hours, again 40-50minute roundtrip commute on EACH visit
2 visits to nutritionists - 1.5 hour visits
1 feeding evaluation - 2 hour eval - 40 minute commute
1 trip to lab for bloodwork - 1 hour, at least 10 mile commute

Add in after school activities for the other three kids, practice, games, and homework and NO WONDER I get nothing done! Parker's ND program takes at least 1.5 each day, add in one nap, cooking dinner too...

Oh, and for the most part about 15% of these visits are covered by insurance. And the ones that are require me to spend at least an hour a day fighting to get reimbursed correctly. Which leaves very minimal time to get work done (double edged sword since all of this costs a LOT of $$) except for early hours and late evenings.

So, please forgive me if I don't respond to your calls or emails promptly or if I totally "flake out" sometimes. I know this is a BIG change as I always was on time (early even) and the first to respond. I love each and every one of you so much, but need your grace these days. Family has to come first(right after Christ) and meeting their needs is my top priority!

I'm posting this for other Moms experiencing the same things, know you aren't alone!

Sorry no pics this post either..no time for pics, promise next post, PICS!!!

XO