Monday, October 28, 2013

16 months old / James's home-a-versary

A year ago we went to PSL with Maisie in tow. James was in one of the tiny closet-like rooms on the 7th floor and we waited patiently for many things to get started.

His Broviac line was removed. We met with his surgeons. We met with the neonatologists, the Apria representative, and we signed lots of paperwork. His binders worth of medical files were condensed into a discharge summary of nearly 100 pages. For the entire morning he was wire free- all of the monitors had been turned off and removed, leaving James a free baby. We dressed him in an alien outfit and hat and once we got the okay, we were outta there! 

First we visited all of our friends on the 7th floor, and then went down to his old stomping grounds on the 3rd in the level 3C/4 NICU. He spent so many months there, causing trouble and commotion that we had a big party on the day of James's discharge. So many people just couldn't believe this day had come. 

For a little baby who had beaten the odds - was not supposed to live, survive, be here at all - he was going home on a relatively normal timeframe with just a bit of oxygen and no other wires or tubes attached. 

It's crazy for us to think we've been gone from the NICU for a year. Every single day I am reminded how lucky we are and how simply amazing our NICU team at PSL was and is. They are world class. From the respiratory therapists to the surgeons, to the nurses and doctors and developmental team... and many, many, more. 

We still visit regularly. The graduate NICU people with the exception of our primaries generally have no idea who we are - mostly because we spent a few weeks there. But our friends in the NICU remember us and our babies like it was just yesterday. They are so proud to see them healthy, growing, and off O's. 

The little dragons are 16 months old as of Saturday. We celebrated with a Trick-or-Treat street at my work. Cousin Giblet and Auntie Ca came into town, so yesterday we went to the Children's Museum and our cousin's birthday party. Today we did Build-a-Bear and the babies of course picked out twin bears.  

Here's what the babies are doing and loving right now:

Climbing, feeding herself, learning body parts, climbing, blue, getting in trouble, chattering, being wild, sniffing like a bunny rabbit, climbing, pointing, blowing kisses, getting messy, bulldozing over James and other "obstacles", shiny things, giraffes, making animal noises, stealing toys from James, climbing, reading books, being a Houdini, cruising and almost walking, opening and closing doors, turning on and off lights, trying to get into the refrigerator and dishwasher, getting into the toybox, hairbrushes, looking at photos of herself, and climbing (lord help us). 

Exploring the house, getting in trouble with Maisie, fighting over toys, pulling up on things, the green ball, crawling all around the house, saying "ball" a thousand times a day amongst other things, eating anything as long as it's fed to him, the green ball, rings and small toys, musical toys, getting in trouble, eating clothes, bright green, chasing the green ball around the house, giggling, learning body parts, disco dancing, wipes containers, talking up a storm, walking with help, pushing the shopping cart, fighting with Maisie, opening and closing doors, and obsessing over the green ball. 

Tuesday, October 22, 2013

Fire Chili

Lately we've been all about cooking. It's kind of strange, making three meals a day... Jimmy and I are not three-meal-a-day type people so it has been a challenge. Firstly, the little dragons don't like leftovers. This causes me some headaches because it seems like a simple solution to meal time. Secondly, they have some favorites (like cheese) but we are struggling to get veggies incorporated in a way both babies like. Apparently they demand creativity!

For example, here was their menu over the weekend...
Huevos  Rancheros with turkey
Chicken, Cheese, and veggies
Steamed sweet potatoes
Steak with mashed potatoes and cheese

Banana cinnamon pancakes (Gluten Free)
Ham wraps with cream cheese, carrots, and Poblano peppers
Mashed Bananas
Puffs and Cheese
BBQ pulled pork with diced potatoes

Breakfast rice with cinnamon, milk and agave
Sliced turkey, cheese, and peaches
Steamed Sweet Potatoes
Puffs and Cheese
Fire Chili with Sour Cream... (To be continued)

We met with our therapists from DDRC today and did our annual IFSP. Everyone is on the same page and it was nice to see that the little dragons are ahead of their adjusted ages in many areas, like their language and social skills. We are continuing therapy for things like motor skills.

For example, one of our goals is to have James work on feeding himself. He will eat anything - as long as you feed it to him. He is like a little emperor. He will chew on clothes, toys, fingers; he will pick up food but he downright refuses to feed himself. I think it's mostly stubbornness but it is one of our goals to work on this over the next six months. 

Maisie, on the other hand, is like a little general. She likes things to go her way or the highway. We will be working on her continued feeding plan and helping her walk independently. 

Subsequently, with the babies eating three meals a day they eat first. We had such a busy day today with appointments and our IFSP review that we decided to do a crockpot chili. Jimmy pulled it all together and it smelled awesome.

By dinner time the babies were starving and we sat down to feed them. I tested the chili for flavor and decided it needed some sour cream to dull the spice a bit, but it was evident when the babies started eating that they were now fire breathing dragons.

They were great sports. Their mouths were hanging open to get cool air on their tongues, and they gulped whole milk from their open cups. Their eyes watered. We just did not realize exactly how spicy that darn chili was...

We gave the babies bottles, which they finished in a matter of minutes and they went right to bed at 8pm. We got our chili and realized that it was nearly the hottest stuff we'd ever made. Jimmy didn't know what happened -  but we felt horrible.

Next time we will thoroughly taste test for the emperor and the general.

Monday, October 14, 2013

Babies / Toddlers

When you have preemies, you are perpetually in baby age limbo. It's tough to figure out where you are, where they should be, how old they are, what size the babies wear... and planning is a whole different story. 

When we go out in public the easiest answer for age is "15 months but they were born a little early" when you notice a look of sheer confusion. 

The little dragons are still below the third percentile for growth, according to their actual age (15 and a half months). On the positive side they are following their curves so their doctor isn't concerned about anything just yet. 

For example, with clothes: Maisie is fitting well into 9 month outfits but can still wear 6 month in some separates. James can still wear 3 month pants and 6 month outfits, though he is getting closer to being able to fit into 9 month. I put him into his Christmas outfit the other day (a 3-6 month suit) and it fit perfectly, with the exception of the pants- which he was swimming in.

The little dragons are growing out of baby stage. Today I disassembled their infant rockers, put away their piano play mat and collected other things that have been dormant for a few months. As the babies have become more mobile and started breaking down the baby barricades, they are less interested in their toys and more fascinated with bowling with cans of beans from our grocery trip. 

Our therapists through DDRC have been very good working with the babies. They understand their prematurity and have worked closely to help us achieve our goals.

Recently though, our main physical therapist started mentioning that she thought James had increased tone. She said on more than one occasion that she recommended we see a physiatrist to help manage therapy appointments and other doctors. We mentioned this to Dr Jim, and he was surprised; he thinks James is doing well given his actual and adjusted age and is making progress. We inquired again with our PT and decided to make an appointment with the Spasticity Clinic at PSL. 

The Spasticity Clinic is a team of doctors that meets monthly and evaluates children who may be at risk for developmental delays or disabilities. Our neurosurgeon is on the team, along with a neurologist we knew in the NICU, a physiatrist/pediatrician, OT/PT, orthopedic surgeon, etc. We went in this week and the consensus of the team was that James seems to be doing well, and they want him to continue to do PT as that will be the most help for him to progress. At this point in time there is no indication from any of these specialists that James would need to have further evaluation/treatment for his tone issues.

In a nutshell, the DDRC evaluates kids based on their actual ages and gives no adjustment. We will do our annual evaluation next week and we will see what they say about both Maisie and James. For now, DDRC is the most convenient way to get therapy in the home on a schedule that we determine. Hopefully we can make it work for our babies / toddlers. 

Monday, October 7, 2013

Circus, Chipotle, Casio

This week has been another whirlwind. Between visiting the dentist way too many times and a couple of other appointments and commitments - we have been way too busy. 

The little dragons had their first circus adventure yesterday and did pretty well, considering the length of the show. Maisie enjoyed watching people and the horses with sparkly pink saddles. James liked the trapeze artists and the electric guitar songs. They started to get antsy after an hour, but we were proud of their behavior considering the show was nearly the length of a plane ride. 

We don't really eat fast food, mostly due to my diet restrictions with Celiac disease. The little dragons have never had fast food and it will stay that way as long as possible. 

However, we all love Chipotle. Yes, the babies love to eat naked burrito bowls. Realistically they take a cut of my food before we eat, but it is astonishing how much these kids love a bowl of steak Barbacoa, brown rice, black beans, corn salsa, cheese and guacamole. It is one great treat that we enjoy and I'd like to think its all natural and healthy. 

The little dragons love music. They could play musical toys or listen to songs all day long. James loves to play the piano and is very delicate with it; Maisie loves to dance and be wild. 

This morning we went up to the mountains and the babies spent time at a my parent's house in Conifer. They have an old Casio electric keyboard there that got lots of use throughout my childhood and now is a baby and toddler toy. James loves to create songs by playing the keys one by one, and he's very into it. Maisie might smash the keys with other toys or climb over the keyboard on the way to chasing the kitty cats.