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

Owies

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.