Friday, August 14, 2015

Shiny red walking sticks

We've been holding off on getting a walker, or any kind of durable medical equipment for that matter. Our PT has been great with letting us borrow a walker to try things out. However, we recently came to the conclusion that the next piece of equipment needed to be forearm crutches for James. 

Luckily we were able to find some very quickly and affordably, avoiding insurance and doctors orders all together. James was so excited to order his red "walking sticks" so he could be "just like Nolan", our pProm buddy who has a lot in common with James and just started walking on his own. 

When the box arrived, James was pretty excited but quickly became a stick in the mud. He tried them momentarily and then his mind was made up, and he did not want to use them. James is one of the most stubborn people I know; yet it is his determination and resilience that has helped him to survive against impossible odds on more than one occasion. James has to initiate the actions and there has to be something in it for him, otherwise he does not cooperate. 

We encouraged James to walk to his bedroom, and along the way he decided to get a ball from the playroom; and that was enough to motivate James to start working with his new walking sticks. By the evening of the first night, James was able to stand on his own with his forearm crutches and walk a few steps without any hands on assistance. Four days later he is walking through the house, maneuvering effectively and using his sticks to pummel whatever ball may be in his path. We still have to encourage him to use the walking sticks versus crawling, which is his preferred method of getting around. James' gait is steady and strong, and we've been impressed with how quickly he has adapted to the new DME. Maisie is adorable too; she keeps telling James how proud she is of him, that she loves him, and asks him to hold her hand so that they can walk together. 

We are hopeful that this is just a stepping stone to walking independently. James has a lot of muscle imbalances to work through, but his stubbornness is perhaps his biggest hurdle. 

Please visit our Facebook page to see a video of James walking with his new forearm crutches.

Thursday, August 6, 2015

Hello friends

It's been a while since we have updated and things are pretty much status quo. We are busy. The little dragons are wild and growing. 

In the last few weeks we've had a few adventures. The little dragons went to a festival in town and rode a pony, and watched the sunrise and hot air balloon launch at Chatfield. We've visited with family and friends, had therapy 3-4 times a week, and enjoyed spending some quality time at home. 

Everyone has managed to stay out of trouble so far (knock on wood) and we appreciate that things have been pretty low key. 

The rest of the summer will be busy. We have birthdays, festivals, play dates and more to look forward to. We have a few doctors appointments coming up as well. There is a lot to do before flu season begins and we transition into our quarantine mode. 

Until then, we will be playing "beautiful princesses" and counting down the time until the cousins come to visit from Seattle in a few weeks!

Tuesday, July 21, 2015

Irrational fears of everything

Maisie has always been as tough as nails. I can only think of a handful of things that have ever bothered her, scared her, or irritated her. 

While in the NICU, she learned early on that the thermometer being shoved under her armpit was not a pleasant experience. Later on, she and James would melt down on demand at the first few notes of their "Night Night" song. They dislike it to this day. Then Maisie went through a time where she was afraid of ghost animals but it was short lived.

Currently several things are on Maisie's list of fears. Dust, fuzz, zombies, vampires, pirates, picture taking, bugs of all kinds (especially ants, spiders, moths, ladybugs, and flies), monster ball, etc. 

The other morning we were getting up and the little dragons both happened to notice a beam of light in their room with specks of dust sparkling in the air. They both became hysterical, crying, and trying to make sense of this new revelation. They've been frightened by dust, or the concept of it, ever since. 

Maisie is so terrified of bugs right now she can barely go outside without several shrill cries. She is even more paranoid if a bug happens to get in the house. One night a moth got in while we were bringing in groceries, and she was hysterical while Jimmy tried to transport it outdoors. She was so traumatized she can still tell the whole story, weeks later. 

I'll never understand how a child can go from eating spiders and pincher bugs to being petrified beyond belief about a ladybug. She used to come up to me saying, "here mommy" and hand me a spider. I was the jumpy one- not her! This girl was in tune with the bugs. Now they are encroaching on Maisie's world and it is not a pretty sight. Part of me feels like she's being overly dramatic, but I am coming to understand that these are credible fears. I'm hoping she'll get over it, but I'll be okay if we never revisit the pincher bug-eating or spider-sharing shenanigans. 

In other news, James is doing an awesome job with his walking sticks. He loves to stand up holding onto them for balance in the middle of the room and watch anything related to hot air balloons. If you haven't seen a hot air balloon festival / race timelapse, those are his absolute favorite to watch and they are awesome. James can stand with these sticks alone for several minutes. He's working on building his balance, stamina, and core strength, and it's awesome to watch the progress being made. James is incredibly built in the upper body and abdomen, while other muscles in his hips and calves have been used less frequently due to the nature of his development. This exercise is great on a lot of levels - James is working lots of muscle groups and reflexes, and he is testing his limits independently.

Tuesday, July 7, 2015

36 months old, Tiny Town and 4th of July

We've been busy celebrating the 4th of July holiday and finishing up birthday to-dos.

On Friday we spent the day with Auntie Michelle, who graciously took our whole family to Tiny Town for the little dragons' birthday. It was a first for most of us even though it is just down the highway. We spent a couple of hours exploring a village of miniature houses, several of which the kids were able to climb in and around, and even rode the train. It was a great adventure as the houses have lots of details inside and out, and the little dragons found things of interest all over the place. Maisie loved running, jumping and finding tiny porches to sit on. James did a fabulous job walking with our help through most of the village, but his favorite part was finding a tiny globe in a school house no bigger than a ping pong ball. After a train ride we headed to town for some lunch at our favorite go-to and the land of the red balloons, Red Robin. Being that it was a holiday weekend, it was busy and a long wait for food - but we had fun visiting with Michelle and left with a few balloons.

Saturday was the 4th and we had a very busy day planned. We started off with the Harvard Square BBQ, which is an annual tradition for us. We spent the afternoon catching up with friends and former co-workers, who have all been very supportive of the little dragons since day one. They rode ponies and a wagon, got balloon animals, and had a blast splashing each other in an impromptu water fight. 

We then headed over to Grandma's to relax for a few hours before a family fireworks party. The kids refused to nap with the exception of Maisie's ten minute snooze in the car. When we arrived at the party, the little dragons spent the night playing and exploring, eating, making S'mores, watching fireworks, and being wild. We headed home late and got to bed just before midnight - much past their typical 8pm bedtime. 

It's Tuesday and we've been through a few days of wild nights and naps. I really don't think we've fully recovered from the late night over the weekend. We are so lucky that the little dragons sleep well and nap most of the time, but when there are variations to the schedule they sometimes have a difficult time adjusting. It's mostly been manifesting in super late naps that run into dinner time and push bedtime later at night. 

Today we met with Dr Jim for the three year Well Child Checkup. The little dragons are doing great and right on target for where they are supposed to be, given their individual circumstances. We are very proud of them and happy with our care team. Dr Jim as always is such a caring and professional physician, and he makes the kids feel such at ease. They were actually begging him for more tickles and participated in the questioning about their health and routines. 

Following the appointment we went home for late naps, and then the little dragons helped make their first full dinner (stacked enchiladas, which were amazing). They followed instructions very well and did a good job sharing the tasks. I am so very proud of Maisie and James for everything that they strive towards and achieve. 

Three years ago, we had the worst night of our lives when we were given "the talk" about James, over and over again. We were encouraged to take him to the room where babies go to pass away. The options were not to continue to fight, but how to surrender. Yet James hadn't thrown up the white flag, and he was not done fighting. He was struggling, that was evident. The one thing he needed was someone to believe in him, someone to choose to fight for him and act creatively with the options available. We are so lucky that on that horrific night, James held strong. We are so lucky that on that next morning, Dr Hanson showed up to be his doctor and he changed the game plan. We are so lucky for our families, who stayed by James's bedside cheering him on and have never, for one moment, given up on him. We are lucky that James continued to be the biggest "dirtball" throughout his 124 day NICU stay, and came home on minimal support. 

On that night, so many of our thoughts went to the future and what it would hold. I have to admit that while there are still so many unknowns, we are not worried about our son. He is intelligent and strong, kind and sweet, and determined to the bone. He will fight, and he will do it his way. There's no predicting this boy except to say that he has survived the impossible and will continue to do great things. 

3 year update:
Book: Baby Beluga or Chicka Chicka Boom Boom
Song: anything by Caspar Babypants or Disney princess music
Words: You name it, she can say it. Yesterday she declared: "I'm a leg of lamb, baa baa". 
Toy: Disney Magiclip Princesses
Food: cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, bananas, muffins, beans, rice, tortillas, quesadillas, Indian food, chips, brownies
Animal: dog, kitty, monkey
Time of the Day: Chalk Preschool time
Activity: climbing, jumping, twirling, dancing, and running
Color: pink, purple
Clothing Size: 18-24 month tops, 18 month PJ's, Pants 12-24 months (skinny waist and longer length), Shorts are 9 months and up. 
Shoe Size: 5.5-6
Weight: 22lbs 6oz on 07/07/2015
Height: 34.75 inches
Number of Teeth: 20

Book: Baby Beluga or James and the Red Balloon
Song: The Globe songs (see below) and Caspar Babypants
Words: James is increasing in vocabulary every day. His favorite subjects are balls, balloons, and roll call of toys and/or people. 
Toy: The globe, big red ball, green ball and balloons. 
Food: grapes, meat of any kind, pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, muffins, peanut butter, pasta, rice, pizza, chili, tortillas, cheese, quesadillas, Indian food. 
Animal: dragon or bear
Time of the Day: playing outside, especially basketball
Activity: putting away toys
Color: green
Clothing Size: 18-24 month tops, 18 month PJ's, Pants 12-18 months (skinny waist and longer length), Shorts are 9 months and up. 
Shoe Size: 5.5, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 6.5-7 extra wide.
Weight: 22lbs 5oz on 07/07/2015
Height: 32.5 inches
Number of Teeth: 20

Saturday, June 27, 2015

3 years old

On June 26th the little dragons officially turned three. 

We returned from vacation earlier this week and spent the last few days hurriedly recuperating, adjusting to being back home and preparing for Maisie and James' birthday party. They also had the final Early Intervention session and while neither officially graduated (both kids still have ongoing goals that we are working on), it was a huge milestone from a prematurity perspective.

Following their birthday party we are sufficiently exhausted. However, the little dragons seem to have boundless energy. Naps have been few and far between, and bedtime has been wild. Soon we hope to get back to normal.

I really can't believe that Maisie and James are three years old. It seems surreal in so many ways. They have made a lot of progress and are continuing - slowly but surely. 

The effects of their premature birth and the reasons behind it (pProm at 12 weeks with James) are still something we are reminded of. When we're at the park, it's when babies and toddlers as young as 9 months old outweigh our kids, walk and climb. It's when people don't think our kids are twins because at three years old, James is still unable to walk on his own and prefers to crawl. It's the unknowns associated with James and Maisie's medical conditions, and the measures we must take to support them. It's the fact that the kids are still wearing 9 month shorts and swimsuits at age 3; while this is great on the budget we can't help but feel like their growth is slow. It's when your peer group is limited, busy, and out of commission during winter months. 

And then there are the amazing times, which are definitely more frequent; when you remember that these are the kids that were given a zero percent chance at life and really are thriving. When the little dragons "meet and greet" every one at the grocery store, they say hello to the grumpy faced people until they break a smile and say something back. At the airport before the flight the little dragons sang and screamed at the top of their lungs; while we attempted to calm them down, we were so very proud that they were capable of such volume and lung power with all the complications they have faced. It's when they giggle and laugh so intensely when you join in, your ribs ache the next day. It's when they are stubborn and headstrong, reminding you that they follow their own path, in their own time and in their own way. It's the times when you witness the unspoken twin communication and bond - like Maisie giving James a lift up onto the couch, or James getting Maisie's blanket from her bed. It's the snuggles, the kisses, the shuns, the loves, the smiles, and the pokey elbows. 

We are so proud of the little dragons and every single thing they have accomplished these past three years. Maisie and James are resilient and determined individuals who are daily demonstrating new skills, interests, and abilities. They are thoughtful, kind, loving, wild, playful and compassionate. We can't wait to see what the next year will bring. Happy third birthday, Maisie and James. 

Sunday, June 14, 2015


We've been on vacation for most of June and it has been an adventure for sure. Jimmy is still at home and will join us on the tail end of our trip. We've been very busy in Washington with Grandma, Auntie Ca, Uncle Da and cousin Marri as they welcomed their newest baby into the family. 

The little dragons have been to Seattle before but for long weekends only. It has definitely been an adjustment for everyone learning how to keep a household moving smoothly with three toddlers and a newborn; ensuring they are all happy, entertained, well fed. It is not for the faint of heart, that's for sure. We are exhausted on all fronts. 

We've been very thankful for our accomodations, company, and the opportunity to be involved in such an important event. Our newest cousin is sweet and adorable and we absolutely love the cuddles. We will take every minute we can get!

We've gotten into a lot of shenanigans but have had limited time to report everything. Here's a snapshot of our trip so far: 

Being in Seattle, the little dragons had their first Starbucks (a smoothie).

James learned that sand does not make a very good snack.

Then Maisie tried and wasn't impressed. 

Maisie and Marri enjoyed dressing up together.

James acquired a "New Bainey" and now has both the new and "Old Bainey"; he also tried to adopt a pair of Marri's pajama pants that had the same pattern and material but we intervened.

We took advantage of the unseasonably warm weather and went to the beach to play in the sand; Maisie dug a huge hole and James described Lake Washington as a "big bathtub".

We spent an afternoon with our pProm friends - Advocate Brittani and baby Audri who is 20 months old and doing amazingly well since our last visit in August 2013. 

Sunday, May 31, 2015

35 months old / NICU Reunion

Saturday was the bi-annual Rocky Mountain Hospital for Children's NICU reunion at the Denver Zoo. It was hot and crowded, but we got to see most of our favorite doctors and our very best twin friends L&L and K&C. The little dragons were very well behaved and agreeable with staying in their stroller. 

The little dragons got to catch up with the main man, neonatologist Dr Jeff Hanson. We definitely would not be here today if it were not for Dr Hanson being on duty a few crucial nights. He oversees an amazing team of physicians over at RMHC at PSL. They are world class. 

We visit the NICU whenever we get a chance but it is always nice to see how many families these amazing nurses and doctors come into contact with. It's simply awe inspiring. We wish we would have had more time with everyone but we will have to make time to catch up later. 


Book: Baby Beluga or Dragons Love Tacos
Song: anything by Caspar Babypants or Disney princess music
Words: Maisie is very talkative. Her favorite thing right now is to act out whole sections for movies and though she's been doing this for a while she is spot on. Her movie of choice is Frozen.
Toy: Little People and Water Wow book. 
Food: cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, bananas, muffins, beans, rice, tortillas, quesadillas, Indian food, chips, brownies
Animal: dog, kitty, monkey
Time of the Day: taking a "blath" or playing outside
Activity: climbing, jumping, twirling, dancing, and running
Color: blue, pink, purple
Clothing Size: 18 months, some 18-24 months. 18 month PJ's. Shorts are 9 months and up. 
Shoe Size: 5.5-6
Weight: 21lbs at last checkup on 3/2/2015. Home weigh in on 05/15: 21.5lbs. 
Height: 32 inches
Number of Teeth: 19+

Book: Baby Beluga or Dragons Love Tacos
Song: The Globe songs (see below), Raffi, and Caspar Babypants
Words: while James is not as talkative as Maisie, he does know hundreds of words and can use them in sentences. He especially likes to describe what is going on with all of his toys, and where they are. 
Toy: The globe, big red ball, green ball and balloons
Food: grapes, meat of any kind, pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, muffins, peanut butter, pasta, rice, pizza, chili, tortillas, cheese, quesadillas, Indian food. 
Animal: dragon or bear
Time of the Day: playing outside, especially basketball
Activity: putting away toys
Color: green
Clothing Size: 12-18 months, some 18-24 tops. 18 month PJ's. Shorts are 9 months and up. 
Shoe Size: 5.5, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 6.5-7 extra wide.
Weight: 20lbs at last checkup on 1/22/2014. Home weigh in 05/15: 20.5lbs
Height: 31.5 inches
Number of Teeth: 19+