Thursday, October 30, 2014

31 for 21: Zac

Remember Zac? He just turned two last weekend! As you can see in the picture on the right, he's on the cover of a local magazine called Kids and Family Northshore this month in honor of Down Syndrome Awareness month! This year Zac has learned many signs, started crawling and then cruising, and is now taking several independent steps. Another big achievement this year is that his eyes actually improved, so he won't need glasses and doesn't have to see the eye doctor again for two years! 

Wednesday, October 29, 2014

31 for 21: Wyatt

It's Wyatt! He's two years old now, and his biggest accomplishment in the past year is that he started to walk! He isn't walking steadily yet, but he's taking 4-5 steps at a time. He also got glasses (awww, I bet he looks so handsome!!) and started taking medication for his thyroid. 

Tuesday, October 28, 2014

31 for 21: Alex

It's Alex! Remember the laughing baby in last year's picture (left)? He's now a handsome 2 1/2 year old (right) who can light up any room he enters! This past year, Alex has become a real talker. He loves to sing songs, especially "Twinkle, Twinkle" and those by Laurie Berkner. He knows his entire alphabet, can identity all upper-and lowercase letters, knows his primary colors and shapes, and can even count to ten! He has started preschool a few mornings a week and starts saying "bye bye" to his Nana as soon as they enter the door. Alex's mom says, "When we first found out  Alex would have Down syndrome, we were so afraid he wouldn't talk or learn to read. He is well on his way to mastering both of those goals! He is one smart cookie!"

Monday, October 27, 2014

31 for 21: Brody

Remember Brody? He's 2 1/2 now! His biggest accomplishment this year is becoming a full-time walker at 23 months, which is wearing his mommy out! His love of learning has really blossomed, too. He uses more than 100 words/signs and tries his hardest at everything he does. Says his mama, "He is extremely determined and amazes me every day!"

Sunday, October 26, 2014

31 for 21: Matthew

It's Matthew! He is 2 1/2 years old now. Here he is with his big sister, Zoe. He began walking at 22 months and is now running! He's working hard on communication and on getting his point across. He's saying more words and showing his mama what he wants if he can't say it. Says his mama, "Soooooo proud of him!"

31 for 21: Conner

Remember Conner? He's 22 months old now, and he has changed a lot in the past year! His mom says he is quite the mover--walking everywhere and getting into everything. He loves to play and be with his big brother. He is silly, determined, strong-willed and just fun to be around. His smile and the twinkle in his eye 
light up a room and melt his mommy's heart. He loves playing with balls, popping bubbles, and reading books. He has started to sign and give kisses. Says his mama, "Conner is truly loved and such a blessing to our family. We are very lucky to have such a precious little boy!"

Saturday, October 25, 2014

31 for 21: Camden

It's Camden! He's 22 months old now, and he has accomplished a lot in the past year! Says Camden's mama, "His gross motor skills finally took off after his first birthday, and he learned to sit and get himself into a sitting position. Shortly after that, he began to move with his cute little booty scoot (which he still does). He also said his first word which just happened to be 'mama.' He then started to verbalize other words and began using some sign language as well. He has become a champ at drinking from a straw and is working really hard on self-feeding with utensils. He has also developed some pretty awesome dance skills. Progress has been really slow in some areas, but we are so incredibly proud of this sweet and amazing little boy. He has taught us so much (especially patience) and has brought us a tremendous amount of joy! We can't wait to see what the next year will bring!"

Ps. This boy just happens to belong to me! :-)

Friday, October 24, 2014

31 for 21: Quinn

It's Quinn! He is now 20 months old. Quinn has had a busy year! In August, he had surgery to correct the fused fingers on his right hand and was in a cast for six long weeks. And he and his brother started at the Rise School of Houston this fall, and they both love it. He has a few words and signs, crawls faster than his mama can catch him, and loves fake sneezing.  His mama is super proud of his latest trick, which is going from sitting to standing without pulling up on anything!

Thursday, October 23, 2014

31 for 21: Davis

It's Davis! He's 2 years old now, and in the past year he became a big brother, as you can see in the adorable bottom photo. He has also expanded his repertoire of sign language to around 75 signs, mastered walking with his gait trainer, and had his picture featured in the heart of Times Square. He says hi to everyone he encounters and is well known for his fist-bumps and kisses!

Wednesday, October 22, 2014

31 for 21: Jordyn

Little Jordyn got her professional start as Coach Sue Silvester's baby girl on Glee. She's now a tiny 2 1/2 year old dynamo who amazes her family every day! In the past year, Jordyn finally decided that walking was fun - she took off in June and hasn't stopped! She's learning more and more words every day. Her favorite things right now are Frozen and Doc McStuffins. She knows the hand movements to the songs and tries to sing along. Her family loves her to pieces - even when she's being a super picky eater!

Tuesday, October 21, 2014

31 for 21: LP

LP is back! He's 23 months old now. His mom says, "LP has really taken on - relished, even - the challenge of being resident toddler destruction force in our household. There is no pile he can't dismantle, no cabinet he can't empty, no important item he can't hide while mom isn't looking. He strives for destructive excellence every moment of every day! Not even his sisters can hold him back." :-)

Monday, October 20, 2014

31 for 21: Gracie

Remember Gracie? She's now 2 1/2 years old and a big sister! She helps her mom with the baby by throwing away diapers and bringing her toys and burp cloths. She loves to help her 
mom dust and vacuum. Her vocabulary has grown to include numerous signs and verbal words, and she's starting to put words together now. Gracie loves to dance and do yoga!

Sunday, October 19, 2014

31 for 21: Jon

Remember Jon? This handsome little guy is 2 years old now! He is now running and climbing and loves to wrestle with his dad and big brother! He struggles with feeding issues and speech and fine-motor skills. His mom says, "He is such a sweetie-loves to dance, is completely obsessed with Frozen, and loves to read books about doggies. Jon makes friends wherever he goes and he makes our family complete!"

31 for 21: Ellie

 Here is sweet Ellie! She is 20 months old now, and recently surprised everyone (including her therapist!) by starting to whistle like a champ! Her family has decided it's in her DNA, since her grandpa was an excellent whistler who whistled every day!

Saturday, October 18, 2014

31 for 21: Sibbie

Here's Miss Sibbie, rocking her WVU cheerleader uniform! Sibbie is now 17 months old, and this year she's learned to get where she wants to go by rolling all over. She has also refined her "make friends with everyone" skills!

31 for 21: Henry

It's Henry! Look at what a little man he looks like in this year's pumpkin patch picture compared to last year's - what a charmer! Henry is now 2 1/2 years old. This past few months, he has learned his alphabet and how to count to five. Henry became a big brother in August, and he absolutely loves his little sister.

Friday, October 17, 2014

31 for 21: Ada

It's Ada! She is 20 months old now. Ada's mom says she loves rolling across the house and dancing, as well as learning new words to say and sign. Her latest sign is "pretty." Quite an appropriate sign to describe her pretty little self!

Thursday, October 16, 2014

31 for 21: Otto

It's Otto! He's 2 1/2 years old now. Otto's mom says he has blossomed in the last year, making friends everywhere they go. She runs to keep up with him and says, "He's a fast little bugger!" Otto communicates mostly through sign and had about 60 signs in his repertoire. He says one word very clearly, and his mom is delighted to report that it's "Mom!" His speech is improving daily. Says Otto's mom, "He continues to surprise us every day!"

Wednesday, October 15, 2014

31 for 21: Tobin

It's Tobin! Tobin is 2 1/2 years old now, and he's the youngest of five kids. He spends most of his time keeping up with his older siblings. His parents are anxiously waiting to hear him start saying words. However, even though Tobin doesn't have many spoken words yet, his mom says he is quite clear at communicating his thoughts and he certainly has a lot to say!

Tuesday, October 14, 2014

31 for 21: Kaitlin

Remember Kaitlin? She is nine years old now. 
This past year, she received her First Holy Communion, which was huge for her! Her mom says she had been NOT patiently waiting since her brother received his two years earlier. :-) Kaitlin's mom says, "I unfortunately have heard of many churches not being welcoming to children/families with special needs. We have been blessed by our church; they have always embraced Kaitlin. And having her receive her First Holy Communion with the rest of the class was just fine and normal. Love and am thankful for just plain old inclusion."

Monday, October 13, 2014

31 for 21: Alaina

It's Alaina! Alaina is now six years old. Her mom says, "This year Alaina has made great strides in her speech and writing. We are so proud of everything she does. She has become very independent and more confident. 
We have gone through another year of different therapies, all helping build her skills and confidence along the way. She is such an important part of our family--a sweet daughter, wonderful sister, and great little friend. She is doing better than ever expected in kindergarten this year, and we are excited to see how much progress she will have made in another year from now."

Sunday, October 12, 2014

31 for 21: Enzo

Here's Enzo! Enzo is almost 3 1/2 years old. On the left you see Enzo last year, with his baby brother. On the right you see Enzo this year, heading off to school and looking incredibly handsome in his glasses! Enzo's mom wrote a lovely piece about their first 
3 1/2 years with him, which I'll share with you here:

Our life was good! Then our first baby was born--dramatically, of course! It was an emergency C-section because the fetal heart rate was dropping fast. In the wee hours God blessed us with a baby boy. We officially announced that he would be named Enzo Alexander. A strong name for a strong boy... who was turning blue. 

Enzo's oxygen levels were low, his heart was acting funny... what was going on? Doctors, nurses, everyone was coming into and out of our room. The pediatrician came in and sat down. This guy was built like Arnold Schwarzenegger and even had an accent, although he was from Hungary. With his kind eyes, the doctor gently began explaining how Enzo was going to need to be taken to Miami Children's Hospital. Something about his oxygen, slanted eyes, markings for this and markings for that... it was a blur.  "We just have to run some tests because we suspect Enzo has Down syndrome." Then he smiled and said, "He is strong, and he is beautiful!"

That's how it all started for us. You know the rest of the story: NICU, diagnosis confirmation, therapies, surgeries, doctor appointments, etc. 
Sure, we did the same as everybody else... we cried a river. We cried and cried. Why? Because we didn't know squat about Down syndrome. But from that day on, we became students, advocates, teachers, and dare I say...medical professionals (just without the degree). Yes, God did bless us! We had an angel in our midst.

Our strong boy with a strong name, Enzo Alexander, came through it all. He is awesome. He smiles a lot, he kisses a lot, he hugs a lot. At some point, months down the road, we realized Enzo wasn't crying about his diagnosis, he wasn't having a problem with it, he lived life to the fullest! What's Down syndrome? It's just a part of life, his life. And guess what? Enzo was right. From then on, the diagnosis was no longer feared. Genesis 26:24 "Fear not for I am with thee and will bless thee..."

Sure, we have more precautions to take, more doctor appointments, more therapies. Sure, Enzo's milestones will be delayed, things will happen slower, differently from other children without Down syndrome. We aren't worried. Actually, that's not true. We DO worry--not because he has Down syndrome, but because he is our child! What parent out there doesn't want their child to be happy, strong?!

We have another child, and now Enzo is a big brother. No emergency C-section, no drop in heart rate, no surgeries, no therapies, nothing for little brother Eli. What we do have now is a very loving big brother who absolutely adores his little brother. They play together all the time. Enzo showed Eli how to walk and run. Enzo showed Eli how to climb furniture (sigh...). Eeeek! Enzo showed Eli how to walk up the stairs. Wow!

And you know what? Enzo has taught us about love! Enzo taught us to live life to its fullness! Enzo is still teaching us. God knew what he was doing when he put these boys in our lives.  John 9:3, Jesus said, "But this happened so that the work of God might be displayed in his life." Genesis 1:27: "So God created mankind in his own image."

Our life was good! Then our first boy was born, then our second. Now? Now life is GREAT!

Feel free to check out Enzo's page:

Saturday, October 11, 2014

31 for 21: Sophia

It's Sophia! Sophia is now three years old, and she is learning how to dress herself and brush her teeth! She can also count to five! And how cute are those little pigtails in her picture from this year?!

31 for 21: Noah

Here's Noah! Noah's mom says they've been BUSY this past year, with six therapies a week plus doctor appointments. In the picture on the right, Noah was doing feeding therapy, which is their biggest concern right now. He just tasted BBQ for the first time in a long time, and he was really enjoying getting messy!

Friday, October 10, 2014

31 for 21: Ben

Remember Ben? He recently turned two! Ben's mom says these past 12 months have been awesome for Ben! He has learned how to walk, eat "people food" (including watermelon!), drink from a sippy cup, and sign more than a dozen words. Says Ben's mom, "He has also learned how to empty mommy's bookshelves, pull down food from the dining-room table, and throw items from the dishwasher on the floor." :-) They've had some very minor health issues this past year that required them to go dairy-free for Ben and to have ear tubes placed, but they're hoping the year ahead brings lots of spoken language and continued good health!

31 for 21: Matthew

It's Matthew! He is now two years old, and his most recent cool achievement is that he's taking some steps. His family found a great physical therapist and has started doing weekly therapy. They got SMOs (a sort of boot-like orthotic) for his feet, and little by little he is making great progress! However, his mom says his lack of walking until now certainly hasn't slowed him down one bit! On the left is Matthew last year; on the right is a recent picture of him reading a favorite book!

Wednesday, October 8, 2014

31 for 21: Ethan

Remember Ethan, the baby boy on the left? He's now the big-boy two-year old on the right! He's now sporting 13 teeth, and in the past year he has learned to crawl, to pull to standing, and to cruise! He knows lots of sign language, such as eat, dog, play and book, but he can also say mom, dad, and bub Ethan loves to give hugs and kisses!

Tuesday, October 7, 2014

31 for 21: Thea

 This is Thea and she's two years old now! Her mom says she loves to be outside and really has shown interest in reading books. She also plays with her dollies by giving them a rider in her cart--her imagination is really blossoming.

Monday, October 6, 2014

31 for 21: Bailee

Do you remember Bailee from last year? She is now 23 months old. Says Bailee's mama, "I love the way she smiles, shakes her head, and swishes her pigtails. The way she wraps her arms around my neck, squeezes me tight, and pats my back. I love her desire to be independent and her determination. She has worked hard this past year and has made so much progress. She is currently focusing on walking and using words to communicate. I am so blessed to be her mommy!"

Sunday, October 5, 2014

31 for 21: Eli

 Here's Eli! He is 19 months old now. Eli's mom says the last year has just flown by. Eli is now standing on his own and crawling up stairs. He is very proud of himself when he does these things  (he even claps for himself, which is awesome)!!! He is very close to cruising around furniture but not quite there yet. Words cannot express how much love and joy this little boy brings their family every day with just his smile alone! He has shown their family to enjoy each step and that it's okay if it takes a little longer to get there - the wait is definitely worth it! On the left you can see Eli with his sister last year; on the right is Eli this year. Eli's mom says,
"The love Eli and his sister have for each other is amazing. We are so truly blessed and have had a wonderful year! Oh I just love him so much!!"

31 for 21: Owen

 This is Owen! He is 21 months old now! In the past year, he has learned to eat and walk! Owen's mom says it has been a big year for all of them!
I also want to mention that Owen's mommy is a rock star too! She started the Rockin' Moms group that I'm in that has been so therapeutic for me. I've made so many friends that are like sisters and I love them and their children dearly. Since the first Rockin' Moms was started, there have been many more started by Jen to help other moms all around the world. There is also a Rockin' Dads too! As if that were not enough, Jen and several other good friends started DSDN. Down Syndrome Diagnosis Network is an amazing resource for new parents seeking support and information. If you haven't checked out the website yet, please do so!
Our Mission: The Down Syndrome Diagnosis Network (DSDN) supports families with current information and real-life accounts of life with Down syndrome during the prenatal to early childhood phases. DSDN is committed to facilitating unbiased, family-centered discussion of Down syndrome within the medical community.  We strive to cultivate a culture of acceptance and inclusion for people with Down syndrome at all stages of life.  (From the DSDN website)

Saturday, October 4, 2014

31 for 21: Evan

Some of you may remember sweet Evan from a year ago. This boy is one of my superheros for sure! He spent many months in the NICU and PICU after he was born. He has already had three open heart surgeries in his short little life, along with other surgeries as well. This boy amazes me each and every day. I love him!

Evan's mom says, "Evan had difficulty last year until his third heart surgery in December. Since then we've had a few bumps in the road, but he has accomplished so much! He's learning to walk and stand, though he has no interest in crawling. He has lost a lot of medications, and he has had some issues with gaining weight, but he finally passed 20 pounds! He loves his big brother and nurse, and is a total charmer where ever we go! He'll need another heart surgery in about two years,
so until then we are having as much fun as we 
can before he is put back on all the medications and oxygen. He's going to be a cowboy someday 'cause of how he likes to kick his legs and bounce in his bed."

31 for 21:Seth

Check out Seth! He's 2 1/2 years old now. In the past year, he has begun walking to the point of almost running, saying words and phrases, and obeying commands! He's one of the cutest boys I know!!!

Friday, October 3, 2014

31 for 21: Rachel

Hi! I'm Rachel! I'm 2 1/2 years old. I can feed myself, and I am learning to dress myself. I can communicate using more than 50 signs, even though I'm not talking yet. But my greatest achievement this past year is mobility! I crawl, I walk, I run, I climb...everywhere. Mommy has to watch out because I'm always on the move, and I can climb into, out of, or on top of just about everything! 

Thursday, October 2, 2014

31 for 21: Emilee

Guess who else has a birthday today? This sweet girl does! Emilee turns two today as well. Happy birthday sweet Em!

Emilee's mom says, "Emilee is pure joy! She is completely in love with us as a family. She loves 'family kisses' and group hugs! She started walking back in July, and we couldn't be more proud. She signs 20-30 words for us and loves to eat! She loves playing with her dolls, always putting them together for kisses.  
We are still on hold for her next open heart surgery but know it's inevitable. We try to take it one day at a time. She also has dental issues that are going to require oral surgery in the near future, but we will cross that bridge when we get there. Just like all the other bridges we've crossed--holding hands and getting to the other side."

31 for 21: Luca

Today is Luca's birthday and he's two years old! Last year at this time, Luca was in the hospital a lot, including the days leading up to and immediately following his first birthday. He was battling seizures,  which wore him down so much he lost head control, was at the developmental level of a newborn, and developed a pneumonia that was caused by aspirating his food and drink. He had a feeding tube placed and could no longer eat anything on his own. After trying five different medications without success, he started on the ketogenic diet, and after an emotional year-long battle, Luca is seizure free and thriving! 
He can eat without his tube, sit up, clap, stand with support, laugh, babble, and light up any room with his mega-watt smile. For all the medical challenges he faced in the last year, Luca is so resilient and taught his family and friends so much about strength, perseverance, and true love! Happy birthday, Super Luca! 

Wednesday, October 1, 2014

31 for 21: Eli

 Last year a dear friend decided to post a pic of a sweet babe along with some info about them as well to her Facebook page every day for Down syndrome awareness month.  With permission I also shared those here for the 31 for 21 blog challenge.  This year she has continued this great project with a little update on how the past year has been.  There is also some new updated pics of these cuties! So, of course I had to share again this year!

We will start with Eli! He is now 23 months old. On the left is Eli a year ago, and on the right is Eli now, rockin' an awesome mohawk! I have gotten to know Eli's mama over the past two years online and have watched this sweet boy grow up in pictures. Hopefully I'll met them in person some day soon!
Eli's mom says: "In the past year (after a hellacious first year), Eli started crawling, cruising, taking steps, saying words, signing words, blowing kisses, and continued being one of the best blessings in our lives. Most importantly, he has been healthy!!!"
(P.S. If you happen to live in the greater Seattle area, you might recognize Eli's handsome mug from the side of a bus--he's a poster child for Seattle Children's Hospital!)