Thursday, July 17, 2014

1, 2, 6

The babies are all about talking right now. 

For James it's "Maisie, Maisie, Maisie". He's turning into a little parrot and will repeat so much of what you say - but he absolutely loves talking about Maisie. He can also say "James" along with many other words and phrases. He is pretty sneaky so his language will catch you off guard if you aren't paying attention. He told me the other day, "water petunias". 

Maisie is a lot more unpredictable. She will chirp out things like "thanks" and "welcome" during meals and playtime, and even tell you about her "owie owie boo boo", then instruct you to "kiss it", even if it happens to be her poopy butt. It's quite hilarious and yet very adorable at the same time. She'll even count to six (one, two, six). 

They are really into playing together and sharing. At dinner tonight James bit off his "agogago" (avacado) and asked "Maisie bite?", then proceeded to give her the rest of it. Maisie stole James's cookies, said "thanks", and then when he asked for more "potato chips" she promptly gave him hers. Mind you - they prefer to feed one another straight to their mouths like newlyweds but as long as it's cordial I won't stop them.

This past week we've stayed busy. On Saturday we met up with friends for dinner and had a great time. Sunday we visited the Wildlife Sanctuary with Michelle and Alena, followed by an Indian food lunch. The little dragons were exhausted but absolutely loved their birthday present adventure day! 

Monday, as always is therapy and our therapists were just amazed at the burst of language and communication coming from the little dragons. They are very into pretend play and language right now, which everyone was thrilled to see. 
James shows off his ability to sit completely independently while watching a music video on the iPad. 

They also have been extremely emotional. I guess that comes with the territory of being two. A melt down could take place following a minor complication - like not being able to hear Elmo's Song or having to go Night Night - and it's pretty epic to see. 

James was upset about Night Night and was refusing the water bottle that he had just asked for. It probably wasn't in the right cup, and this upset him even more. 

Maisie believes our house is occupied by a shadow cat, ghost dog, ghost bug, etc. I'm not totally discrediting her, because she is seriously scared when telling us about these animals - but lately she's been perfecting the details of her dramatic performance. Maisie may very well have acting or speech and debate in her future. It's made life very interesting here!

Friday, July 11, 2014

Splish Splash!

After moments like this - avocado explosion - the only way to clean a little dragon is bath time. 

The babies absolutely LOVE bath time. They make tons of waves, throw balls all around the bathroom, and take turns giving me more gray hair. 

As they've gotten older, bath time is both easier and harder. We can do a dual bath and most of the time is spent playing. The toughest part is wrangling each baby to wash hair while making sure they don't drown (or drown their sibling) on accident because they are WILD!  They are so wild, in fact, that the only way I get a decent photo of the little dragons is to take a video and find a still photo later. 

This year has been one struggle after another with insurance. We were lucky to have amazing insurance for the babies' first 18 months with Premera Blue Cross. In Febuary we switched to Aetna due to an ownership transition at my work. The change was tough- higher cost, higher deductibles, higher out of pocket maximums and coverage that is seriously lacking in many areas.

Take James's orthotics, for example. Aetna believes that pediatric orthotics are not medically necessary, and they are not covered by our plan. I have the best plan offered by my employer and we are still looking at paying a cost of $1200 every 6-12 months for the ankle/foot orthotics James needs to be able to walk. 

This is just the tip of the iceberg, and we are sinking. Every dime I make goes to pay medical expenses, and yet we make too much money to qualify for Medicaid disability, or any other assistance. The nonprofit aligned with my work cannot help us because we are a) employees and b) not underserved enough. It's miserable. 

So, as a family we decided that we needed to make a change to help protect our bottom line and help insure the family. Next week I am leaving a career and a business that I love - one that has been very supportive of our family - to a new job where there's more flexibility and better comprehensive health insurance. 

Here's to the future- more time with the little dragons and less time haggling with stupid insurance companies and medical bills!

Thursday, July 3, 2014

Partying and Progress

On Sunday we had our whole family over for an afternoon birthday party for the babies. It was a beautiful day, albeit a hot one. We spent the better part of the afternoon playing outside and enjoying company at our home. It was the first time many of them had been to our house, and we were glad to share the day with everyone. The little dragons devoured their GF snickerdoodle cupcakes and opened presents.

Monday morning was busy with physical and speech therapy for the little dragons, followed by a nap in the car and a trip to the Aquarium. We saw lots of amazing fish, sharks, turtles, and of course the tigers. We even caught the Mermaid show! The little dragons ate a quick lunch outside before heading to the doctor for their two year followup. 

At Dr Jim's, the little dragons were weighed and measured. They are:
Maisie: 19lbs 3oz, 31.5 inches long
James: 17lbs 9oz, 30.25 inches long

Dr Jim said Maisie was doing great and he considered her to be caught up at an actual two year age. He said that James is doing extraordinary, given all that he has gone through, and he is very pleased with his progress. 
On a side note, it is amazing how much they've grown since our first appointments with Dr Jim in late 2012. 

The rest of the week was relatively calm; we laid low until today, when the whole family attended the 4th of July Celebration at my work. The little dragons rode ponies, did a horse-drawn wagon ride, ate lots of food, saw lots of wonderful friends, and more. 

We rounded out the evening with a BBQ and fireworks at GGP's. The little dragons played all night long and had a blast. Maisie even kissed a lizard and James loved eating every chip he could get his hands on, between playing with every ball he could find. 

Happy 4th of July from the Little Dragons!

Thursday, June 26, 2014

2 years old

This year was much less eventful than the prior two. We didn't need the Operating Room, thank goodness. We tried to do things the babies would like, eat great food, and focus on experiences. As usual, we wanted to keep the babies away from any unnecessary exposure to germs and illness.  

We got up early for a breakfast snack of rice pudding and then headed out. Our first agenda: Snooze for gluten free pancakes! The little dragons were very patient and even were told they had great sets of lungs (there were a few mini screaming matches with other babies). Although we felt like we should have brought our handheld vacuum, everything went really well at our breakfast. The blueberry pancakes were a hit and James tried "taytos", which he loved also.

After pancakes we split up; Jimmy took the babies adventuring while I had a long doctors appointment. They visited Wings Over the Rockies Museum and while they were there, they saw local pilot and news anchor Amelia Earhart. She is heading off on a flight around the globe and they were able to participate in her send-off. The little dragons were very popular apparently, and I don't doubt it. They are cute and very friendly. 

Afterwards we headed home, stopping at Sonic for Strawberry Lime-aids (our last meal before delivery two years ago). We got Cinnamon ice cream for the birthday kiddos, which they absolutely loved - and then came home for a dinner of green chile chicken enchiladas. 

After dinner and phone calls and FaceTime with family, we read our favorite book (Goodnight Little Dragons). We also read birthday cards from GGP which were a big hit with the little dragons. 

Two years ago, we were at the edge of a cliff and about to jump off without parachutes. It was the most terrifying time of our lives. Even though we were prepared for preemies and the NICU, it was more than we bargained for. Luckily, our determination and resilience helped us a lot. 

Two years later seems like a lifetime away, in some ways. But, we still have medical bills from hospitalizations and surgeries and illnesses that stem from our babies' prematurity. We struggle with insurance companies, doctors, providers; all in the hopes of aligning for the best care. 

There's no more "adjusting" for prematurity. The babies are two, and that's it. They wear 12 month clothes and are ahead in some areas and behind in others. And- that's okay. We'll take it! For  kids who weren't supposed to be here they are doing fantastic and thriving. 

Happy 2nd Birthday, babies. 

Friday, June 20, 2014

Hey Dude Ball

The little dragons are one week from turning two. I can't believe it, really. Both tell you that they're two, and have moments of "terrible-two-ness".  Mostly they are cute and you can't get frustrated at the little dragons for testing the world and their place in it. 

James broke his favorite water bottle last night (sorry Auntie Ca) after smashing it on the kitchen floor as hard as he could. He loves to try to throw and bounce everything as if it were a ball. Some things just don't hold up. 

Maisie loves to stick random things up her nose. Sometimes we don't find them until hours later when she goes into a sneezing fit, which usually produces the contents of an earlier scavenger hunt. 

They both love to scream and sing all the way down the bumpy part of the highway  when we make the journey to Denver. 

The little dragons also come up with very interesting phrases. James loves to say "Hey dude ball" - we think he's trying to get us to play catch with him. Maisie is more like a parrot and can mimic anything you say - so watch out, world!

Thursday, June 12, 2014

Spasticity Clinic

Today was James's two week neurosurgery follow-up and just happened to be the day of the Spasticity Clinic. We hadn't been for a while and felt that now would be the perfect time to get everything done in one appointment. 

The Spasticity Clinic at Rocky Mountain Hospital for Children is a group of pediatric specialists who gather monthly and see patients at risk for high or low tone due to prematurity or other health concerns. James has pre-existing conditions (being very low birth weight, having lots of complications in the NICU, etc) and is at risk for having delays and issues with tone moving forward. 

The Clinic brings in everyone necessary- Neurosurgery, Neurology, Orthopedics, Physical and Rehabilitative Medicine, Prostetics/Orthotics, etc. These are the practitioners we met with today. We discussed James's progress since our last visit eight months ago, and came up with a plan to help him continue to make strides physically and developmentally. 

When James arrived he insisted on crawling into the appointment and showing off all of his current skills. He was social, lovable, and obviously proud of the progress he has made. And of course, we couldn't be more proud of him. 

The consensus was unanimous - James is an amazing kid and has come a long way since birth, our last appointment, and even since his surgery. He has the drive and determination to go anywhere he wants to. Our job is to support that and make sure he has all of the tools possible. 

Our plan:
1. Orthotics: James was fitted for and picked out colors (green / ball) for his new orthotics which we will get in the next few weeks. This will address the pronation he has developed in the last nine months. They will help him stand, cruise, and eventually walk. We also ordered night splints that will help the achilles, knees and hamstrings. 

2. Physical Therapy: while we receive Early Intervention from DDRC, we all agreed that we can do better. We can supplement this and perhaps find a professional who is more adept at helping James. For someone as determined and driven as our little dragon, we need our therapists to be innovative and creative and go the extra mile. James has unlimited potential - we need to unlock it. 

3. Re-evaluate therapeutic options after 3-6 months of the above therapies. James had major surgery two weeks ago and has made major strides since then. 

Following our appointment we had enough daylight leftover to spend some time splashing in puddles and playing ball on the deck. Maisie and James love to play outside!

Thursday, June 5, 2014


According to Maisie, James has "owies". She has been pretty good to James overall while he heals from surgery, aside from an incident of trying to pull off his surgical glue - for which she earned a time-out. 

James is healing very well. Since returning home last Thursday he has been crawling all around the house, chasing balls.

He can sit regularly now, though he still prefers to sit on his knees and crawl around. He's too active to sit still! We've also noticed better range of motion in his arms and shoulders, as James is able to reach above his head more comfortably amongst other things. A few days ago he fed himself a whole bowl of applesauce with a spoon with great precision and accuracy, all by himself. He mostly likes his left hand, but can use his right if inclined (in the hospital James ate a whole plate of eggs and potatoes with a fork with his right hand due to the IV). 

Maisie has had two days without nebulizer treatments, and although she still has some dry coughing spells we think she is nearing the end of this bout of bronchiolitis. She's pretty much back to her feisty, hungry self.