the days of December are nearly gone...wow, we have had so much fun this month!!! The pictures prove it as does the lack of blogging, LOL! Uncle Matt is here from CA, Mike and I got away for a long weekend to San Antonio for his Christmas party which is always a wonderful way to ring in the season (after that FANTASTIC NYC trip too)! Then it was fast and furious as Christmas came (and went). Today we are "housebound" due to a monsoon of rain, all the new gifts are out and open everywhere. Life is good! Blessings to all, may the gift of Christmas shine brightly all through the year, not just on Christmas day! Be ready, PICTURE OVERLOAD!! there were 269 pictures from the last 2 weeks!
Hubby and I just returned from a 4 day trip to NYC (without the kids) and feel so blessed! This trip was a "tag along" for me for Mike's work, but really I think it was a gift from his company for the wives! We were pampered and treated to spectacular accomodations, meals, and gifts! The company and fellowship with the group was such a blessing. I always praise God for Mike's job and the owners of his company, their families, and more importantly their faith. God richly blesses the organization and I know it is a testament to their commitment to measure things by Christ's standards not the worlds. Grandma and Grandpa did an amazing job here at home and don't think for a moment it was an easy task!! Swim meet, Santa parties, schoolwork, and "normal" daily routine and activities in this house doesn't leave much time for rest! We feel especially blessed to be able to "get away," and don't take that for granted. We know many couples that have far less complicated schedules with no help/family close by. Mom and Dad, we know we don't say "thanks" enough, but we love you and we never mean to take advantage!
Coming back is so sweet! Parker was so excited to have us home! And, I now appreciate what Mike experiences coming home each week. Lots can change in a few days! Parker has changed in 5 days!!! He's standing alone very well, wants to walk assisted more frequently than before, and several new words and sounds. Good to get away for so many reasons.
One gains new perspective when one gets away sometimes too. The continued burden of dealing with insurance on a weekly basis, the books of research required to keep abreast of Parker's diagnosis, the home programs, the therapy and Drs appointments are a part of our lives, but we truly are so blessed. Parker is thriving and so are our other kids and we are so thankful. Reflecting over this year and all we've been through and Christ's continued provision is something to celebrate! So, we continue to focus on the blessings and remind ourselves to count our blessings one by one!
A few more pictures from our photo shoot from the Littlest Heros project. Kimberly, these are SOOO fantastic!!!!
Hard to believe 18 months have past..so much has happened in these 18 months..so MUCH to be thankful for...some days the burdens are heavy, but by stopping and counting these blessings God always bring things back into perspective! So I will remember one day..at 18 months here are some "stats"
Parker is still 20 lbs (more on that another day), not sure about length since he wouldn't let the nurse measure him.
He is VERY adept at climbing, standing, cruising everywhere and on everything. He is frequently found "hanging" on things and we pray it is all "nailed down". He is "all boy" and constantly on the move. Everything goes in the mouth, he chases the cat and dog all over the house and while we have a stair gate, he usually can be found up about 7 stairs when you turn your back. Something about having older kids that forget to close the gate. LOL. he can even get DOWN a few stairs alone, WHEW!
He is starting to practice "letting go" while standing and pushing things while walking although we are working hard to have proper structure and not rush the walking (important with these kids so they don't have a funny gait walk or worse yet need surgery later in life to address bad structure). This is easier said than done for us, we wrestle with the knowledge that we don't want to fix a "bad walk" and the fact that most kids born after Parker are already walking (stop comparing I know). Patience is a virtue, right?
He can self feed anything with amazing accuracy and eats just about everything. loves all fruits, veggies, beans, you name it, he eats it. He is gluten and casein free and we don't find that to be very difficult to manage these days.
He continues to develop verbally, he is always in constant chatter mode and now more "words" are developing. He can identify his face, ears, belly, eyes when asked (he won't point to his own nose, but will point to yours). He can "tickle-tickle" which is the cutest thing ever...he wiggles his fingers and says "tickle-tickle" in the cutest voice while coming at you with those fingers! He knows what the dog says (ruff-ruff) and we are working on other sounds. He has mastered his "displeasure" sounds, not just shaking his head "no," but says "na,na, na.." and if you are really lucky you get a scream of displeasure which means "now!" I'm afraid he has learned that from his precious siblings...we have a house full of loud, busy kids!! He has figured out to be heard he needs to be louder than they are!
He loves his siblings with amazing passion. He chases after them in the house and doesn't want to miss one moment with them. They love chasing Parker on hands and knees and never tire of him. Mallory loves to do backbends around the house and Parker chases her on hands and knees until he reaches her face and kisses her upside-down nose. It results in giggles from them both. Makes my heart burst. So much love!
It has been 4 months since his heart surgery. He continues to thrive and we are so grateful for a successful outcome. God truly answered out prayers!
So, my precious boy, 18 months and we are truly blessed.
"Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. I thank you, High God-you're breathtaking! Body and soul, I am marvelously made! I worship in adoration- what a creation! You know me inside and out, you know every bone in my body; you know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, the days of my life all prepared before I'd even lived one day." Psalm 139:13-16-The Message
We have been blessed by so many during the course of this journey with Parker and recently had the most amazing opportunity! A friend told me (thanks Adrienne!) about this wonderful organization called Littlest Heroes Project, now know as Inspiration Thru Art. Photographers donate their time and take pictures of families and kids that have life threatening illnesses and/or surgeries.
Here is their mission statement,"...a non-profit organization dedicated to empowering young people to give back, and make a difference through the beauty of art. We are artists with a passion for giving and inspiring others. Through our own artistic talents we are able to come together as one, to let children around the world know that they are loved,despite the challenges they face everyday. Inspiration Through Art was founded in January 2008 by Felicia Reinhard, made up of professional photographers, artists, children, and other volunteers nationwide that provide free programs and services to our nations heroes. Through the power of photography and the gift of art we are giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world. If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. Inspiration Through Art provides our special heroes with complimentary photo shoots, special cards and mail, gift packages, and various other programs, events, and fundraisers. Our mission at Inspiration Through Art is to help provide and capture memories for families who are dealing with hectic schedules due to having a child who is suffering from a serious illness or life altering disability. We are here to offer emotional support through the beauty and expression art has to offer, as a way of healing and coping. We understand that in the midst of being thrown a diagnosis and having to switch from a “normal” life to a life that is totally different, and often scary, things like getting photos taken is sometimes a huge challenge and is one of the last things families are thinking about. But when everything is done, and either the child has reached the end of their battle, or has proven the odds against it many wish they had more time to stop, and capture the journey that they lived through for so long. Through Inspiration Through Art- our photographers and volunteers understand each and every case, and cater it to fit and honor each child and family. Our photographers are on hand to travel to homes, hospitals, clinics, fundraisers, and benefits to help capture your child’s journey in a “Day in the life” sort of style and work personally one on one with your child and entire family to get those special family photos and moments that you can cherish for years to come. Our special art volunteers are also on hand to travel to your child’s home or hospital for a fun and personal art session catered just for your hero! Our special Hoping Hearts package program is setup for children who are currently in treatment or in the recovery stage of their journey. Every month a package will arrive with a special goodie or toy donated and/or handmade just for your hero! All of our services are free of charge and are made possible by volunteers around the world!"
We were blessed to find Kimberly Benyak for our shoot. Her calm spirit with 4 rowdy kids were amazing and she captured some beautiful images. We are humbled by this gift of generosity. Truly the arms of Christ!! Be sure to visit Kimberly's page as well as the Inspiration Thru Art "Heroes" page...I promise it will make you count your blessings every one! Kimberly, thanks isn't enough...
well, it was bound to happen right? At 17 months, Parker finally got sick. I'm proud to say we've made it this far, but wishing we had made it further! Last week Mallory and I had pretty bad ragweed allergies (she had SNOT), I lost my voice, but I didn't think it was a cold...guess what..three nights ago I figured out maybe it WAS a cold and today I am SURE it is a cold. Parker is seriously congested and I am trying everything to get the snot OUT (who uses that word on a blog or in conversation? LOL). Went ahead and took him to the Dr yesterday to be sure it wasn't in his ears or lungs..verdict? He has a cold, lots of congestion, croup like cough, but ears and lungs are clear. What can we do? nothing really. So, we have been saline rinsing and suctioning to help ease the stuffy head. He sleeps better upright which means someone needs to hold him all night long. For kids under 2 there really aren't many options anymore since decongestants and such have been taken off the market for kids under 2 years. For kids with DS it is even more complex (where I might be tempted to half the dose of benadryl or something to ease the stuffiness) due to the SOD that happens with the presence of that extra 21st chromosome. Means no tylenol or antihistamenes. They contain gluthathione which is a big problem for kids with DS. This is a great post that has lots of links to the research on why we shouldn't give these things to our kids. Most Drs aren't aware of them, so thought I'd share here too.
I tried the homeopathic route too, but most of those say not for infants either. If anyone has a good solution send it my way...we've been doing to hot steamy shower, so if nothing else my skin might look younger, LOL. more importantly pray for a quick recovery. He's miserable (me too)!
Next post will be a close to the 31 for 21, but for tonight...I must share the Halloween week...Parker sported his Halloween shirts all week...thank you Lil Sis Designs for the Batty tee, SOOO many compliments as always(forgive the food, most of these were taken after dinner and we are messy)! Parker playing "boo" or "peek" outside, fixing the trash bag (common problem in our house) or Taylor is teaching him to empty the trash at a young age..yes, his pants are wet since he dumped the cats food and water over and proceeded to bathe in it after trying to eat as much of it as he could... Sunday after church we went to the pumpkin patch to attempt pictures..lets just say I am very nervous about Sat's family picture this year..Sunday night Halloween..can I say I have the BEST husband around..who else would put on a Batman costume for his girls? Parker had to "warm up" to Batman. And my precious husband offered to let me stay home feet up, alone, with a glass of wine...in the end being with the family was way too tempting...these moments are fleeting as the kids grow up! Blessings to all!
"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!