Friday, September 26, 2014

27 months old

The little dragons are doing great. They're talking, eating, growing, and being toddlers. They are loving and wild, dramatic and imaginative.

We haven't had appointments except to adjust James's AFO's; his legs are gaining strength and muscle mass and he is getting stronger every day. A small adjustment was made to the calf positioner to make room for his growth. 

Coming up we will do flu shots and the IFSP (Individualized Family Service Plan) for Early Intervention. We will be setting up goals and services for our next 6 months of in-home therapy for the babies. 

PS, if you haven't seen the Little Dragons' Facebook page; there are two videos of the babies singing their favorite songs. Go to:

Book: Five Little Monkeys
Song: "ABC Song", "Twinkle Twinkle Little Star", & "Five Little Monkeys"
Words: Hundreds. Sentences. It's crazy. She's very much into "I love you". Today she told the orthotist for James's AFO's: "Oh, I love you foot doctor, I really do." 
Toy: Mickey & Minnie Mouse, Baby Doll, Bucky the Dragon. 
Food: cheese sticks, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas. 
Animal: dog, kitty, monkey
Time of the Day: Playtime
Activity: drawing, singing, playing with James, playing make believe
Color: blue
Clothing Size: 12-18 months. Finally transitioning to 18 month PJ's!
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 32 inches
Number of Teeth: 18+

Book: ABC by Dr Suess, or any book with a ball in it. 
Song: "Twinkle Twinkle Little Star", "Elmo's Song", and "Itsy Bitsy Spider". 
Words: James can sing many songs and his vocabulary is exploding right now! It's very exciting. For those who believe he can only say "ball", we've been compiling a list of the words he knows (see below). 
Toy: Any kind of ball- his favorite is currently football. He also likes to play puzzle buckets while standing with his walker. Speaking of the walker; James is walking with it everywhere! 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, tortillas, cheese. 
Animal: dragon or bear
Time of the Day: playtime or Elmo Time
Activity: playing with his ball, walking with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, but he can also wear 6 month pants. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 17lbs 9oz at last checkup on 06/30/14
Height: 31 inches
Number of Teeth: 19+

Wednesday, September 17, 2014

Maisie Day

Today we celebrate Maisie. It is her two year Home-A-Versary from the NICU. 

Maisie is growing up fast- exploring, learning, singing and jumping. She can sing "Twinkle Twinkle Little Star" and recite the entire "ABC Song". 

Year One.

Year Two. 

Tonight we ate tacos, cupcakes and ice cream. We stayed up an hour past our bedtime having fun, and just enjoyed time as a family. 

Two years ago, it was the first time we were able to hold both babies together after a long 83 day NICU stay. And James wouldn't come home for another 5 weeks; that week Maisie came home he spent two days and a total of 10 hours in the Operating Room. It was intense. Luckily, we all made it through and are here to celebrate!

I've always felt that Maisie helped protect James during our pregnancy. She kept us safe from infection due to her presentation as baby A. I had very severe issues with placental abruption and bleeding for weeks on end; in pProm bleeding weakens the amniotic sac and it put Maisie at a greater risk of pProm also. It was absolutely amazing that she endured 10 weeks of significant bleeding in the womb and did not rupture. Maisie is strong willed and assertive, and she is very protective over those she loves. I hope she'll continue to nurture those attributes as she grows. 

Tuesday, September 9, 2014

2014 Quarantine

This past weekend was a busy one. We saw our twin friends L&L and we went to the Big Chili Cook-Off in Evergreen. We all had a great time and the little dragons enjoyed eating lots of amazing food, as always.

The Big Chili Cook-Off was fun; we saw lots of fire trucks and tried dozens of types of chili. The event raises money for the mountain area volunteer fire departments and turns out a pretty good crowd. The little dragons voted for their favorite chilis and they loved the red chili from Cactus Jack's. It was a hit. 

It turns out that there are some pretty powerful bugs going around lately, and lots of kids have been hospitalized with Enterovirus 68. We are no stranger to enterovirus as Maisie had this and rhinovirus when she went into the PICU for the first time last November. 

The little dragons won't be getting RSV shots this year being two, so we will be going into quarantine earlier than normal this year. It's a little sad that we'll have to keep our playground visits to the backyard, and our playtime restricted to home; but the kids are fine with that. They have a lot to do and plenty to keep them occupied. 

Like, selfies. 

The swimming pool. 

Pedicures (evidenced by foot selfies). 

Elmo ball. 

Good food. 

Mickey and Minnie Mouse. 

Chex parties. 

Our PSA: wash your hands for 20 seconds with soap hottest water you can handle. Get Lysol Grade 3 Aerosol spray or Clorox Professional Grade Germicidal products- 99% of "disinfecting" wipes do not get rid of the viruses and bacteria that make people the sickest. Finally, if you are sick- stay home!

Sunday, August 31, 2014

26 months old

One of our readers mentioned a while back that the month-age thing (i.e. 26 months old) is confusing. I agree, and when people ask I tell them that the little dragons are two.

I still feel the need to do monthly updates and will continue to do them for several reasons. First and foremost, for the kids being preemies. The little dragons take their time to do things and it's important to track and monitor their growth and development. I can look back and exactly pinpoint what was happening when, which is important for our many medical providers. Luckily our appointments are on six month intervals now; but this makes their progress even more difficult to track. 

Secondly, it's important for us as a family to recap where we're at. Everyone struggles, but we prefer to celebrate - even the small stuff - and celebrating birthdays every year just doesn't cut it for us. Like most preemie families, we celebrate our birthdays and our coming-home days, the good days and the tough days. When your children were basically given no chance of survival, you celebrate; every word and every step.

I hope one day these little dragons are able to look back and feel proud of all that they have overcome, of all the adversity they have faced and conquered. They have seen more in their 26 months than most adults have experienced in a whole lifetime. Hopefully we can make a difference because of it. 

Book: Five Little Monkeys
Song: "Itsy Bitsy Spider", & "Five Little Monkeys"
Words: Maisie comes up with lots of interesting phrases. For example, "Mickey Mouse is going night night and has sweet dreams". 
Toy: Mickey & Minnie Mouse, Little People
Food: cheese sticks, cookies, pancakes, waffles, avocado, fruit snacks, peaches, blueberries
Animal: dog, kitty, monkey
Time of the Day: Potty Time (still making attempts at potty training). 
Activity: playing outside, sharing with James and make believe
Color: blue
Clothing Size: 9-12 months, maybe some 18 months but she can wear 6 month shorts 
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 31.75 inches
Number of Teeth: 18+

Book: ABC by Dr Suess
Song: "Nom a Nom", "Elmo's Song", "Itsy Bitsy Spider",
Words: James is a parrot and will say anything and everything. He can say 5-6 words in a row. For example, "watch Elmo ball maybe later Mommy"
Toy: Any kind of ball- his favorite is currently football
Food: waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta - he loves food. 
Animal: dragon or bear
Time of the Day: playtime or Elmo Time
Activity: playing with his ball, walking with help, and chewing on his green blankie
Color: green
Clothing Size: 9-12 months, maybe some 18 months but he can also wear 6 month pants 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide
Weight: 17lbs 9oz at last checkup on 06/30/14
Height: 30.75 inches
Number of Teeth: 19+

Friday, August 22, 2014

Our first playground day

For one reason or another, we've never been to the playground. We have swings and a slide at home, and plenty to explore in our backyard; so maybe it's that we've never felt the obligation to go somewhere else for the afternoon. However, part of my hesitance also lies in the fact that James and Maisie have been on different skill levels mobility-wise. Maisie is running and climbing all over the place, while James is cruising, crawling and pulling to a stand. 

As a parent of twins, it's also difficult to let two wild toddlers have free reign of a play structure that could be very dangerous without another set of hands or eyes. So today, when we had a few hours to kill and we went to the park, I must not have been thinking straight. 

We started off on the toddler playground. It was small and manageable, with a cute tunnel and two little slides. The little dragons had fun for a good 15 minutes before that playground had run it's course. 

We tried out the baby swings and that was entertaining for a few minutes as well. Then, the babies wanted to explore. Maisie was content on the sandbox; after a few fistfuls of sand in the face he scampered off towards the huge big kid's playground. 

Maisie was tossing sand all over herself but wasn't going anywhere so I followed James. He's been working on stairs with his grandparents lately and he decided he was going to attempt the stairs here. They were no challenge whatsoever. James was fast and furiously racing towards the top of the playground, towards a long and steep slide that was closest to us. Just before I caught him, he lept in face first and flew down the slide.

Mommy heart attack.

Maisie was still playing in the sandbox, throwing sand everywhere and having a grand old time. James had reached the bottom of the slide, crawled out and and reached the bottom of the stairs just as I got to him. He was thrilled and heading back for more. 

James went back to the steep slide a few more times before brazenly attempting the next slide, a twisty one up another half-flight of stairs. He then attempted the tallest slide, two stories high and curly. James screamed and laughed the whole way down, and at the end headed back for more. 

Maisie did have her own taste of adventure when she bolted off towards the street without warning and then collapsed into a fit of laughter when I caught her. She also wanted to hug a very large and unfriendly "puppy" without warning. 

It's definitely a challenge to watch twin toddlers making their mark on a playground for the first time. James was truly remarkable and faced his challenges with absolutely no fear. This was amazing therapy for him. James is the strongest and most determined person I have ever known. Maisie continues to keep me on my toes, and each day is definitely a challenge yet so rewarding. Her love and tenacity is second to none. 

Sunday, August 17, 2014

Food Festivals and Frankie

Today we spent our morning playing and our afternoon at two food festivals. We are exhausted and the little dragons are wound up.

First we stopped by Denver Celiac Association's Annual Festival and they had over a hundred vendors with gluten free foods to sample. We were there at the very end, which meant free parking and lots of freebies from vendors in excess of what everyone else probably took home. The babies tried pizza, cookies, quesadillas, pretzels, and more- and they had an awesome time. 

Following this we loaded up the car and headed down the street to the Potenza Lodge for the Feast of St Rocco. It is a tradition in Jimmy's family to attend - his grandparents ran the cake and coffee stand for years and now helps out at the sausage sandwich stand. We stopped by to take in the festivities - and though the babies and I didn't eat there we had fun exploring the sites and sounds and visiting everyone. 

Maisie wanted to run everywhere and was absolutely wild. She danced to the music, said hello to everyone, and decided she wanted a motorcycle. Uncle Luke won Maisie a princess doll which she was thrilled about!

James was in a very loving mood and was giving out kisses left and right. He also did lots of walking and even took several steps holding on to just one hand! It was a huge accomplishment for James! His AFO's have been a wonderful thing and he is up to wearing them 10 hours a day. James got a giant red football from his Uncle Luke. 

This week was also exciting for another reason. Maisie and James have been anxiously awaiting their new cousin, whom they lovingly nicknamed "Frankie"; and he was born earlier this week. They were able to meet him just hours after he was born for a few minutes and they were both very sweet with "Baby Frankie". 

They also had a great time running all around their birth hospital and turning the waiting room into a giant jungle gym. 

Sunday, August 10, 2014

Pancake balls and sleeping motorcycles

The days have been flying by. We've been busy working with James and his new AFO's, adapting to our new schedule and spending lots of time learning new words. Every day it seems that the little dragons are coming up with new words and phrases; their vocabulary is growing exponentially.

James can identify all of the following balls: baseball, basketball, soccer ball, football, and beach ball. He has special names for all of the dozens of balls he plays with too, like "green ball", "big red ball", and "zoo ball". This identification of balls spills over into foods, too. In the produce section of the grocery store, if something is ball shaped he gets really excited and calls out "ball!", even when he can't identify the fruit or veggie right away. 

Friday I made muffins and James decided they were "blueball (blueberry) pancake balls", which is pretty accurate - they were ball shaped and tasted pretty pancake-like.  He ate 5 pancake balls and I was very glad I made a double batch!

Maisie is very much into identifying peoples, objects and what they happen to be doing. For example, Saturday there was a bicycle race on our road and we saw hundreds of bicycles. Maisie says "cycle" every time she hears or sees a motorcycle. 

In the morning, she saw all of the bikes and told me, "Mommy, motorcycles sleeping... Shhh..." Of course; bicycles are a lot quieter that motorcycles! When a cyclist got off their bike in front of our house, Maisie said "cycle fall down and got an owie". We didn't check but we think the cyclist was okay. Maisie offered a bandaid but they left before we could get one. 

We've been working on lots of exercises to help James stretch and strengthen his legs. We are now up to wearing the AFO's about 5-6 hours a day consecutively. He has been doing well but at times it is difficult to keep James focused on exercising. 

It is hard to believe that only a year ago James began his army crawling. He was very slow but determined to get to his Clifford book. Today he is a wild man and will barely sit still for five seconds. He has an uphill road but we know that James has the fortitude to get the job done. 

We've been working on pushing a weighted shopping cart around the house, sitting on the basketball and practicing standing up, and walking with help all around. Though we love living in our ranch-style home, we are missing stairs for James's sake right now - the only ones we have are outside on the deck. Stairs are a perfect strength building exercise for him and James loves to climb the stairs. 

Maisie is very much into playing with her Little People and her tiny baby doll, which she borrowed from her Auntie Victoria. She loves to talk for them and interact. Maisie is also very affectionate and tells her friends and family "I love you" in a very sweet way. It's SO cute. 

Finally, we have a new neighbor we've been hanging out with this summer. Here he is:
The little dragons are very in tune to when Deer is around and tell us before I even realize he's wandering around.