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! :)
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!
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"
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!