This is a video of my son Max, hamming it up as a weatherman. I love his spontaneity and humor. He will definitely not be a shy guy. Hope you enjoy this little video!

Klevr.us -- Really nifty furniture trend

Perfect solution to kids and adults sharing space!

It's Buddy Walk time again! October 19th!

Hi there! We're excited to put on our running shoes again for our little hero, Charlie. Max, Daddy and Mommy are geared up to raise $3000 for the Buddy Walk in Fort Worth. 

I can't believe the year has flown by and we're walking in another Buddy Walk. It seems like yesterday I was writing about the 2012 Buddy Walk! 

Charlie is doing wonderfully well -- no surgeries, mystery diagnosis's, no sickness or pain! We are counting our blessings and enjoying life! 

Please consider donating to our team CHARLIE'S ANGELS -- just go to this link: https://secure.ezeventsolutions.com/fr/NTBW/2013BuddyWalk/CharliesAngels and donate to help us reach $3000 this year! We only at 18%.. but I think or rather, I KNOW we can do it! 

Thank you for being one of our angels.. xoxo! ~ Diana

Buddy Walk and Kinderfrogs -- Yeah!!!

The 2012 Buddy Walk is coming! This walk was created in 1995 by the National Down Syndrome Society to celebrate Down's Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down's syndrome.

We are gearing up for this big day again. It's even bigger for Charlie this year because my hope for him is for him to be walking by that day! I can see it now... stumbling, toddling, holding his arms out in his Nike tennis shoes, shorts and a Buddy Walk t-shirt leading the way with his Charlie's Angels walkers cheering behind him!

This is my hope and our Goal. With the help of all the wonderful therapies he's receiving at Kinderfrogs school and his undeniable determination to grow and become stronger, I think he sure could do it!

So, if you want to sign up to walk with us, please do! We need to build a team. His team was small last year but we have lots of friends who care and I think it could be much bigger this year. His team is called Charlie's Angels and you can sign up to walk or donate at
https://secure.ezeventsolutions.com/fr/TCBW/2012BuddyWalk/CharliesAngels.

There is so much to do at the Buddy Walk (located at UTA in Arlington--and starting at 10 am) for the whole family -- the walk itself is just a part. They have music, games and activities for the kids, jump houses, food and drinks, the turn out is HUGE and the walk is a wonderful social experience for everyone!

I look forward to it every year! I hope this year will be bigger and better for Charlie and his angels!

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Charlie just started school on August 10th too! He is a student at Kinderfrogs. Kinderfrogs is the school that we've been lucky enough to A. have in our "backyard -7 minutes away from our house! and B.that caters to children with Down's syndrome... it's like we were meant to have Charlie and for him to have Down's syndrome!

"Kinderfrogs School of Tarrant County is the only early-intervention educational program for children ages 18 months to 6 years with Down's syndrome and other developmental delays. It was created in 2000 in response to a 1999 appeal from the Fort Worth community and the energy and commitment of a group of dedicated parents. Currently, no other early intervention program for these children exist in Fort Worth or the surrounding area." (Kinderfrogs TCU web site)

Per the web site: "KinderFrogs serves 30 children in three classrooms and each classroom employs a teacher who has a graduate degree in Special Education and two instructional teacher assistants. The student-teacher ratio is about 3:1The College of Education at TCU is the only teacher preparation program in the United States that operates two laboratory schools in special education: Starpoint School and KinderFrogs School."

We are so very blessed to have this school available for Charlie. I was worried about turning him loose and putting him in a full time school --5 days a week-- but I finally came around to realize how important it was for Charlie and his future --as child and later as an adult. Mommy needs to allow him to learn independence at this stage in order to embrace it more and more; and before long, he'll be able to care for himself and live a life just like everyone else!

Buddy Walk and Kinderfrogs! Yeah!! 

Hospitals and Hope

My story keeps evolving. Our story, I should say. The children, Max-4 and Charlie-2, are doing great -  wonderful, in fact. I'm doing much better too, I must say. I have gone through a roller coaster of emotions surrounding all of the challenges/surprises I faced since the beginning of this blog. Even since the last time I posted an update, have things regarding my children rattled my world, our world--Brock, myself, Max and Charlie.

Max & Charlie

However, children have a way of adding a layer of comfort to any situation -- like a fluffy, furry, soft blanket over your shivering body on an icy night. I am beyond thankful that they are who they are and that they are in MY life. I couldn't have asked for a better cast of characters in my "play." Truly. 

So, the story began with Max and I for two glorious years. A mom with her only son, at that time.  We  perhaps wanted to add a sibling to the mix "in the future".. but not in a huge hurry.  Max and I were as tight as a mother and son could ever be. I cried over the mere thought of giving birth to him.  His gorgeous being was overwhelming to me.  I couldn't imagine loving another human being the way I loved him, my first child.

But...when I became pregnant with little Char-Char, I knew it was completely, entirely possible to have the same "volcanic" love for more than one child. It was, like with Max, undeniable. That love that grabs you and pins you down. There's no escaping the heartburn, nerve-tingling love that you feel for your children. Any mom I know, totally gets this.

My children have created new things in my personality too that include a "mama bear" like I've never seen. I'm extremely protective and defensive of my "cubs." I'm also kind of a "neurotic-multi-tasking-anxious-house cleaning-type" mom too (deep breath).  It's really comical to see me in action sometimes... I don't know whether I'm coming or going.  I often clean several times a day --exciting huh? -- and leave the house only to come back 5 more times to get things I've forgotten. My busy mommy mind is like an overflowing pot sometimes. 

You know, I thought being a mom might make me a better "employee" at some point in my life, you know with all the "new skills" moms pick up (wink, wink)... but I'm a little scared of the kind of employee I'd be now. I get a lot done in a short time but my thoughts are always strolling back to "where are the kids?" "everyone ok?" "I should be doing something with them" "What do I cook for dinner?" "I'll read them a book" "No, I'll take them for a walk"... etc..etc. 

Basically, I'm a mom on steroids! Not literally, I hope you know! I was telling someone recently, I can't imagine taking any job as seriously now that I have kids...it's like are you kidding me? I remember how much time I put into work: staying late every night, stressing over presentations and now having to leave my kids home sick? These are things that would make me want to quit.. in a heartbeat. Reminiscing about some of my old employers confirms that my head wouldn't be in the job with them... I would need to work for a family-focused business not a typical "dog-eat-dog" business. Although back then, I WAS that "married-to-my-job" kind of employee. It's ironic. 

To wrap it up, I truly love to work but my primary job is to raise Max and Charlie right now. I do realize that I'm very lucky to get this opportunity. I chose this route for myself. There are oodles of women who would rather be working and are very defiant in their choice to work-- and I'm proud of them too. It would be such a sacrifice to me (of Olympic proportions) to leave my boys every single day.

On the OTHER hand, my children will both be in school starting in September. And incredibly, I'll have free time! So, this mommy wants to explore things I love to do and how I can help the family financially. I want my talents and skills to be utilized to enhance my life, our lives.  Additionally, I want to show my kids that mommy has a well-engineered brain, boundless creativity, and strong ambition. I hope they enjoy seeing their mother busy, growing and excited for "her" future as much as I am for theirs! 

Phew---- deep breath. Did any of my rambling make any sense? 

I wanted to update on Charlie's progress too. Regarding sweet, funny, silly, adorable Charlie, who just turned 2 on July 28th -- he's doing fantastic! 

We've been through lots of ups and downs including two hospital stays at Cook Children's Hospital in Fort Worth, Texas.

In January of this year --right after a beautiful Christmas and New Year-- Charlie got a stomach bug. This stomach bug lasted 4 days roughly. I noticed something strange though around day 4 -- he was acting weaker instead of stronger. Although the diarrhea had subsided, he was showing no improvement in his muscle strength. I took him to his pediatrician and he gave me antibiotic and sent me home. It was the "he's just weak after a bad stomach bug" diagnosis. So, I brought him home, worried yet hopeful he'd heal and this would be behind us. I really expected him to show improvement and not decline. I even posted on Facebook at the time that I thought my son Charlie was "regressing" and whether anyone had any advice. 

Charlie's arms and legs kept getting worse--he refused to do things he used to do. He didn't pull up in the crib anymore; he sat a lot and played on the floor. Previously, he was cruising around the furniture and that stopped altogether. He also had trouble picking up his sippy cup, and he had to move his mouth to his hand to feed himself--instead of moving his hand to his mouth.  Poor Charlie was crankier than usual too(he was normally happy and playful), he stopped scooting around on his bottom and even avoided scooting over to me--which was really odd to me. Still our sweet, sweet Charlie, he continued to show love and was fun, cute, and talkative. 

Around day 8, I was up at 3 and then again 5 a.m. that morning worrying about Charlie; researching his ailment online. I kept getting up thinking about him and his situation. Beside myself, knowing that he's getting worse, not better. I knew something had to be done soon. It was the final straw the next morning when I went into his room and peaked inside his crib and noticed he had slept through the night and didn't move an inch. The night before, I had covered him with a blanket and fully expected him to kick it off at some point, but he didn't.  I picked him up in tears and realized my poor little baby was drenched in sweat.  I was shaking as my "mommy-radar" went off like a siren in my head and we kicked it into high gear. I said "We're going to Cook's!!". 

At Cook's we got the red carpet treatment.  Charlie had an open heart surgery at 4 months old and they took care of him then. (Very well I might add -- and I was grateful for that). I remember getting Charlie in the car to go to Cook's and I was so confident in the decision and even excited because I knew we were on our way to "help."  It was like going to the Wizard of Oz. I knew when we walked through the doors, they would step in and rescue him. They are very aware of the many issues kiddoes with Down's syndrome can have. Strangely, this disorder that Charlie had was not one of them. 

 

Charlie LOVES to read.. passing time in his hospital bed

After a battery of tests -- blood drawn, x-ray, MRI, and even a spinal tap -- they found what the problem was. The young ER doctor who was in charge of our case was the answer to my prayers. He did all the tests that I previously researched and knew could help us determine what was wrong. The night before, Brock and I researched what caused paralysis in limbs and one of the problems came from something called Guillain-barre syndrome, which can be determined by spinal tap only--testing the protein levels. Basically, this syndrome is a very rare reaction to his stomach bug. Something that afflicts 1 in 100,000 a year; mostly men in the 30-50 age range.  This reaction was actually Charlie's own body attacking itself. The antibodies from the virus were going crazy and destroying the nerve endings in Charlie's body, starting with his legs, moving to his arms and would gradually cause devastating debilitation of the rest of his body if not treated quickly. This disorder typically has a recovery time of 4 months to many years. 

Charlie meeting a nice stranger while on a walk in the red wagon

I was relieved that it was something he'd recover at all from but the whole thing was just mind-boggling as to why he was in this position at all. It was imperative that we get him on the proper medication to turn this thing around. I was in constant tears as you can imagine. First, I was relieved to "know" what was causing his rapid decline and second, that it was recoverable and lastly, extremely frightened to imagine what could happen if the drugs didn't properly help him. 

I met his neurologist soon after and discovered we were in for a long haul -- at the hospital for at least 4 months he said. He warned us that it would get much worse before it got better. Which means he would become more paralyzed and even lose his ability to breathe. He would have to be on a breathing machine.  The medication -- intravenous immunoglobulins (IVIg) -- was our miracle drug. He was hooked up to a drip for 4 hours each night for 5 nights. He showed improvement almost immediately. The drug was actually a blood product that overwhelmed the body with antibodies and "convinced" the body not to produce anymore--so hence, the destruction of the nerve endings ceased. We did however learn of another issue sweet Charlie would have to face when they did the MRI. Fortunately, the issue was less serious in comparison to the Guillain-barre. He would have to have surgery at Cook's for a spinal defect called a tethered cord. We have since had that surgery as well -- on June 28th, a month before his 2nd birthday -- to the day. 

Charlie blew me away with his strength, agility and happy demeanor. I'm still amazed at him when I look at him. And don't think I don't remind myself every single day when I see him pull up in the crib, scoot around the floor, feed himself, read his books, do his signs, laugh and smile, cruise around furniture, play with his toys... etc etc, of how LUCKY and BLESSED we are. He's back and stronger than ever! 

Max hanging out on July 4th

Our lemonade stand at Charlie's 2nd birthday in July

Max "walking" with Charlie

Max turned 4 in June and we celebrated with a family beach vacation with my sister's family. They had so much fun! What a wonderful turn of events. Sweet Max has been the ever-so-supportive big brother to a little guy that was born with challenges. Mommy and Daddy coping as best we could. Making it through, now stronger than ever. 

Charlie meditating ... this is one of the best pictures... EVER.

Mommy and Charlie - June 2012

July 28th, Charlie turned 2. He is definitely back to where he was before the guillain-barre, and then some. I'm so, so proud of him. Charlie's favorite animals are farm animals -- he signs them all. For his birthday, we did a farm animal theme and surprised him with a petting zoo in the front yard. It was unforgettable. He loves horses too and a fitting theme could've been "back in the saddle again." 

Hope you feel caught up in our happiness... until next post. Thank you for your love, support and interest.

PS...if you want to support Charlie in the upcoming Fort Worth Buddy Walk, it's October 20 at the UTA campus from 10 am 'til 1 pm. Hope you can join us in the walk!

xoxo! 

Venting etc...

Some days I feel like a black spot of ink on a white wedding dress. I just can't feel like I'm blending in anymore. Although, ironically, I've always tried to stand out. We all like to be noticed in a good way, right? It's just when it seems you're noticed and you can't exactly read what is being thought. (Not that we ever really can, right?)

I step into restaurants, clothing stores, Starbucks, grocery store, you name it, and I always wonder what the experience will be like before I enter the doors. Now, I'm not consumed with it, it's not earth shattering stuff here, just minor irritations usually. What I'm getting at, is how people react to seeing my child or rather, my baby with Down's syndrome. I try to be understanding to the world, but some days I just want to glare back at them and say "what are you looking at?! My baby is cute, isn't he?"

The glares that get me are the ones that come from people who look and don't smile, and never make eye contact with me. It breaks my heart that they are so bold. Some even squint to get a better glance and break their necks. Ugh.

The glares that make me happy are the ones that are accompanied by a smile and usually a comment like "You're baby is beautiful." They also tend to goo-goo and ga ga at Charlie for a couple of minutes. Those moments warm my heart.

I also adore the people who I never actually see who make eye contact with Charlie and have a brief "conversation" with him while I'm not looking. I tend to notice after I see Charlie smiling and making noise.You know the more I think about it. The happy experiences with the public while I'm out may be fewer in number, but outweigh those funky experiences. I always remember those kind comments.

And why is it that the ones around us the most tend to make the most questionable comments too? They don't mean to I'm pretty sure, but geez... like "he looks nothing like you! haha" or "Honestly, I feel sorry for him"... etc etc... I have cried over comments from friends and family, although I know or rather hope they love me and my kiddoes regardless of what we're going through.

So it's been a while since I last posted and I'd like to catch up. Charlie was 4 months old at the time and hadn't entered the hospital for his heart surgery. December 7, 2010 was the day he had his VSD and ASD's (ventrical and atrial holes) repaired and he has healed with flying colors! Charlie was incredibly strong in the hospital and always impressed not only the doctors and hospital staff but his family and friends as well!

I'm so very proud of him for being so strong. I think he gets that from his Oma! :) Together Max and Charlie have been absolutely terrific. Max is actually starting to show love for Charlie. I was worried because Max and I have been and are so very close. He is my little man, my sweetheart. But now with Charlie in my life, I have divided my heart in 2 - one half for Max and the other for Charlie. Charlie is my soulful angel.

So, Max just turned 3 and had a wonderful little party on a train - The Grapevine Train. The ride went through the Stockyards in Fort Worth. It was perfect! I can't imagine a better gift for him at this time. He even got to ride in the engine train with his dad! He was beaming. I was ecstatic. However, it was steaming HOT. It's near impossible to do anything on either of my sons' birthdays due to our Texas summer heat --one born in June and the other July. Oh well, we have to adapt.

Charlie's 1st birthday is coming up and we'll be doing a nice little Par-tay for him as well. Not sure what to do, any suggestions? We did a Hawaiian party for Max when he turned 1. Thinking about a cowboy theme or maybe a 1950's theme, just tossing those around. Definitely taking suggestions!

Now regarding Charlie's developmental progress: (always something to track and celebrate!) He's 11 months old and has been sitting up without toppling over since around 6 months old. He has great eye sight (20/20!), hearing is good, and he babbles like crazy (funny stuff too, like loud raspberries in public). Charlie LOVES people and makes eye contact with them all the time, he's a little social butterfly and little flirt. He also plays with his toys (a big variety) on a regular basis--he loves banging two things together, he also loves to hear musical toys and anything noisy. He's not yet crawling and is still toothless like Pam the clam but that's ok! I am working with him diligently on the crawling and other physical therapy. He'll get there! He's as strong as an ox, I tell you! And don't you worry, he loves to eat and is exploring all kinds of new tastes and textures. He munches with his gums just like a baby with teeth, I kid you not! So having no teeth is not slowing him down in the eating category!

Anyway, that's all I've got at the moment... I'm going to come back here a lot more often. I can't wait to share my kids' successes and all the excitement of our experiences, not to mention thoughts on things we go through(sometimes funny, sometimes emotional)... so far this summer is about swimming, science museum, the little gym, parties, parks, playdates, the zoo, and the list goes on and on!

Money is tight too, so mommy is exploring ways to make money. Still interested in completing a children's book that I wrote... love photography and will try to pursue that...and last but definitely not least: my foot puppet project! It's moving along.. we have a few renditions of them and I've actually sold a couple. The next thing I'm going to do on that project is pull together a group of moms for a small focus group. I then want to create a flyer/brochure to highlight the ones we have and hopefully start taking orders. They are so cute! I've posted a couple of pics!

Thanks for following our story... much love.

Foot puppets for Kinderfrogs!

Good evening!

I just had an epiphany tonight. I want my son Charlie to attend Kinderfrogs. What is Kinderfrogs, you ask? Well, that's a great question. Kinderfrogs (Kinder meaning Children in German; Frogs - a little amphibian animal which is the mascot of TCU - Texas Christian University) is a school in our very own Fort Worth, just minutes away from my home, located at the TCU campus. It is DEDICATED to teaching children with Down's syndrome. Incredibly, this school is within a 5 minute drive! I absolutely want my little guy to go there one day. Actually, they start kiddoes at 18 months old through age 5. The program is a 5 day a week, Monday through Friday, full day program that helps our little ones learn everything from feeding themselves to potty training...from writing to reading...from running and jumping, to talking! I hope to start Charlie in the program at age 2. I enjoy working with him in our home until then. I teach him new things daily, from sign language to exercises that help him reach his milestones like rolling over, sitting up, feeding with a spoon, social interaction, reaching for toys, shaking, clapping, and countless other things that need extra attention when a child has a disability, like Down's syndrome.

So, here's my dilemma...the school is VERY expensive. I know that we have a little over a year to figure out how to find the funds. We could hope that it falls from the sky or that my husband creates a million dollar app idea; or that we win the lottery...or that suddenly everyone buys Legare furniture (legarefurniture.com) and the money starts to roll in.....OR I, mommy extraordinaire, ;) come up with a hot baby product that EVERYONE will want and NEED!

Ok, well, the last thought may not be so far fetched. Hear me out. Those who know me have probably heard many of my ideas/inventions... I'm always creating new things in my head. Most of the time they stay there (in my head). Other times, I share the ideas and don't do much else with them. And a very few times, I actually follow through, like writing my blogs, writing a children's book (hopefully to be published!), learning photography...ok, all that to say...I came up with a cute children's toy that my dear friend Margaret crafted for me, foot puppets!(patent pending)

The adorable, one of a kind, foot puppets are shown in my photos. We can make just about any characters you would like--except for those requiring a license, like Disney characters. But generic ideas like, frogs, dogs, cats, clowns, lions, Santa Clause...the list goes on and on! My goal is to sell enough foot puppets to pay for Charlie's tuition to Kinderfrogs! Sound like a crazy idea? Maybe, but I hope not! My husband is the nay-sayer on whether we can afford this school and doesn't quite believe I can contribute monetarily without a "full-time" job. I know we can't afford it right now (it's $14,000 a year!) but I can at least try to move the needle and get the funds rolling in. I don't care if I have to work three jobs, I want Charlie to have a good start in life. Kinderfrogs may be like college is for my older son, or it may be a stepping stone that will help Charlie attend college one day too!

I would like get orders from all over the country if I can! I might be crazy, but I'd be crazy for not trying on his behalf. Please pass on my blog, or post it to your Facebook page if you want to help and own an original "made in Fort Worth" toy that will delight any and all babies! Charlie LOVES his pair -- the crazy red-headed clown and the silly bald headed clown. :)) My son's future will be so much brighter with your help!

Foot puppets for Kinderfrogs!