Monday, January 19, 2015

Potty Mouth

The little dragons are unbelievably smart. Maisie is really into a curse word phase right now and definitely shows off her skills whenever possible. We can't post here for obvious reasons but it's safe to say she knows about 10 bad words and counting. 

Could you believe such bad words come from such a cute little girl? 

The best reaction is to NOT react, because otherwise she thinks it's hilarious and keeps on going. James gets in on the action too and repeats whatever Maisie says. Then they run around the house, screaming "@$/&" and "@&$/@&$!"

I guess we are learning that toddlers pick up their language everywhere - and everyone has to be super careful about their choice of words around these little dragons. We will try to stick to Caspar Babypants radio as much as possible to minimize the damage.

If you know Maisie, you'll know one of her favorite books and songs is Five Little Monkeys. In most of the portrayals, the monkeys are dressed like humans, and it is interesting to see how this translates to a two year old perspective. We certainly did a few weeks ago. 

In December we visited Fort Collins for an impromptu holiday choir concert. It was the little dragons' first concert and we were a bit concerned as it was orchestra and opera - but we thought it was worth a try. 

The kids were overall very well behaved and did a great job paying attention and not getting in trouble. Maisie pointed out Santa on several occasions and they had a blast getting silly stringed by The Grinch. 

Everything was going well until a beautiful young woman came up to do a solo. The theatre was very quiet in anticipation of this Opera student's solo. Maisie looked down at the stage, eyes bright with excitement, and shouted at the top of her tiny little lungs: "LOOK! A monkey!" 

We were mortified. 

Luckily I don't think the poor Opera major heard her, and the acoustics in the room prevented most of the audience from hearing her. 

We have been around people of all different backgrounds and cultures, so this was definitely something unexpected - a two year old's take on society. 

Proud mommy moment of the week: the little dragons got to play with their twin friends K&C up in Estes Park. It was an amazing to watch these kids, four babies who weren't given odds to be here, surviving and THRIVING!

Tuesday, January 6, 2015

Spina Bifida Occulta

Sometimes when you're going through treatments and therapies and surgeries, the diagnosis just goes by. Doctors don't mention it and unless you get a copy of the chart or specifically ask- and sometimes things are left unsaid. 

We got confirmation a few months back that James has spina bifida occulta, a neural tube defect that affects approximately 10-20% of the population. While some people have no complications or symptoms, James has definitely had problems. He has a lot of the hallmark issues of a spina bifida kid- the mobility issues, hydrocephalus, tethered spinal cord, motor skill concerns, etc. It's unfortunate for James that he was diagnosed so late and that his mobility was affected - but we realize that he is in a much better position than a lot of others and we are thankful for that. And finally, we believe that there is a good chance that James will continue to make progress as our Neurosurgeon is confident that there was little or no impact on the nerves around the spinal cord. 

A crucial agenda for us is working to build new neurological pathways and focusing on neuroplasticity with James. Recognizing that his learning style and developmental path is unique, we have added a few distinct therapies to help James reach his full potential. If there's one thing I know about James- it's that he is determined to succeed and will do it his way. 

James has been working with a Feldenkrais Physical Therapist weekly for the last few months and we have seen dramatic improvements in the way he moves. With Feldenkrais the idea is learning how to move, addressing existing issues and working around them. It is gentler and by nature, not repetitive and forceful like physical therapy tends to be. Historically James has had very solid motor planning skills but has recently accomplished the task of getting in and out of his high chair independently using a step stool, which is huge. He is forever looking for new methods and testing the waters, trying to figure out the best way to do things. 

Our new therapist is not replacing Early Intervention- merely working with James on common goals that will continue once EI ends in June. In a few short weeks we have noticed that James is much more engaged with our new PT. She has demonstrated a sincere willingness to help James with his needs versus attempting to force him into activities that aren't compatible for his interests or his functionality. It's been fascinating to watch and learn from. 

We also just started Gonstead Chiropractic - our close friend and fellow pProm mom Jill is a practitioner, and has seen amazing results with her own children. Jill has offered to work with both James and Maisie, with a goal of improving their overall health and well being. After the first session, we noticed immediate improvement in James's range of motion in his lower back and hips. His feet were also attended to, and following the session James had much more flexibility in his feet. It makes exercises, mobility, and therapy much easier. 

So where does this leave us? I have some hesitation with the Botox procedure, but I understand why it has been proposed. I am just not sold on the idea that it will help James. They've said Botox is effective for 3-4 months, but for someone two and a half that is a good chunk of time. He doesn't have a Cerebral Palsy diagnosis, and while there is some spasticity and tightness in some muscles- it isn't all the time and he has pretty good functionality that I don't want to lose. So, the more I try to envision the goal of getting James's feet to a good position for walking, preventing long term issues, addressing the pronation, and continuing to build muscle strength I just don't see Botox lining up with these goals. Perhaps there is another solution that would be a better fit, and we just haven't found it yet.


Saturday, December 27, 2014

Merry Christmas & 30 months old

It has been a whirlwind of a week. The little dragons are officially 2.5 years old, have survived Christmas and all the festivities, and are feeling much better after last week's mystery illness.

We are all officially exhausted and trying to catch up on sleep. Planning for the holidays is hard work yet really rewarding for the kids. Luckily we had lots of help, especially in the gift wrapping department (thanks Grandma!) We definitely got into Santa this year and the little dragons loved the holiday. They especially liked Santa, Frosty the Snowman, and Rudolph the Red Nosed Reindeer. They also started to understand the concepts of gift giving and receiving, which was really neat to watch. The little dragons made their own handmade presents for their friends and family and were very proud to pass them out and tell everyone about the gifts. 

Christmas Eve was spent with Jimmy's family until very late into the evening. We got home right before midnight, read "The Night Before Christmas", and got everyone to bed. 

In the morning, the little dragons slept in and then found the Christmas tree lined with gifts from Santa and our family. They were excited and spent lots of time with their new toys. There was a little fighting - they are both into "MINE" right now and it's been a challenge. However, we sat down for breakfast of my family's Tea Sticks (Finnish Pulla Bread, made gluten free) and pumpkin pie. We got ready and headed down the hill for our first dinner. 

We met with my side of the family first, and the little dragons were content to play ball with their cousins and great uncle and be wild all afternoon. They ate dinner at their own kids table, and ate a ton of ham, potatoes, rice, cinnamon pears, and blueberry cinnamon sponge cake. They were crazy and barely had time for a nap while on the way to our next destination - Jimmy's family dinner. 

Christmas Day was snowy and the weather declined as the day went on. By the time we were on the road in the early evening, the conditions were poor and it took a long time to get from point A to point B. We were monitoring the weather and road conditions, and it soon became clear that we would be safer to stay in town than to attempt to get back home - there were dozens of accidents on the highway and no plows out, and we were not willing to take any risks. Jimmy's sister and brother in-law invited us to stay overnight at their house and luckily everything worked out for the best. 

So we stayed late with Jimmy's family and ate Prime Rib - the little dragons were still wild and not slowing down anytime soon. They snacked all night and barely ate dinner, but they saved room for cookies. We opened gifts and then headed out in the snow for our sleepover. 

We all stayed up past midnight, but eventually the little dragons went fast to sleep in a Pack & Play. They woke up and played in the morning with their cousin and his new toys. Maisie wasn't hungry and took a nap, while James ate like a king and refused to nap. We headed home after lunch, made it safely, and spent the rest of the day with the kids napping intermittently and eating leftovers. 

Book: The Night Before Christmas (Maisie can recite a lot of this book by heart). 
Song: "Jingle Bells" and "Rudolph the Red Nosed Reindeer" - she can sing both. 
Words: We have really been into holiday-themed stuff lately. Maisie loves talking about all of the Christmas stuff she knows about, like "children snug in their beds" and "not a creature was stirring, not even a mouse". Very advanced for 2.5. She is also into declaring objects as "mine!"  
Toy: Whatever James is playing with. Also, baby dolls, dinosaurs, little people, etc. 
Food: cheese, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas, Indian food
Animal: dog, kitty, monkey
Time of the Day: bath time, "Preschool" time (Chalk Preschool online). 
Activity: drawing, singing, jumping, painting, getting into trouble
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 21lbs at last checkup on 12/11/12
Height: 32 inches
Number of Teeth: 19+

Book: ABC by Dr Suess
Song: "Rudolph the Red Nosed Reindeer". It is adorable; he knows all the words heart and can sing it for you on request. 
Words: James is very much into "mine", like Maisie, but he is also developing his sentences. He said the other day, "I am sorry for throwing my water bottle off the table". 
Toy: Balls are the favorite. But James likes other things, like musical toys and toys that make noise. He also likes whatever Maisie is playing with. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, chili, tortillas, cheese, Indian food. 
Animal: dragon or bear
Time of the Day: assembling his ball "entourage" for meals. Tonight there were 9 balls at dinner. Yesterday there were 7 green balls (yes, only green ones) at breakfast. James is particular about his ball collection and making sure they eat with us. 
Activity: playing with balls, walking and standing with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, and we are getting to 12-18 month pants due to length. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 20lbs at last checkup on 12/11/12
Height: 31.5 inches
Number of Teeth: 19+

James giving his 10 green balls a bath - his idea, not mine. 

Saturday, December 20, 2014

Feeling off

The last week Maisie has been fighting off some sort of an infection, but it hasn't really gone one way or the other and we've been thankful for that. She had to go back on oxygen overnight after a few pulse ox checks found her saturations to be in the 70's. We don't know what she has, but the doctor gave both James and Maisie Tamiflu because of the huge increase of people, especially children, with Influenza right now. 

Aside from being a little "off", it's difficult to say what is really going on with her. Given her history the doctor has been pretty proactive and concerned. It is better than the alternative. But, she isn't sleeping well, she's not eating well, and she's had some periods of grumpiness. And we've got the hypoxemia or low oxygen saturations she's been having. Maisie did have a fever over a 24 hour period last weekend and has had some lethargy. But that's about it. 

Maisie is doing a great job given the circumstances, keeping her oxygen on overnight and during naps and not even fighting it. She'll give us the cues when she has had enough and doesn't need the O's anymore. She's usually right. 

James has been on the fence with infection also- sometimes he seems to be not doing well and other times just fine. Hopefully all of their symptoms will resolve soon. 

We put up our Christmas tree and holiday decorations. The little dragons and really getting into the season. They absolutely love singing Rudolph the Red Nosed Reindeer and Jingle Bells. They like Frosty the Snowman and have been pretty good about keeping our tree and the ornaments intact. 

We are hoping for an illness free Christmas with our friends and family. 

Friday, December 12, 2014

20 pounders!

We've been waiting to post this update for a while, and seeing as how our doctors appointments are really infrequent these days we aren't weighed very often any more. From the NICU days that's kind of tough to transition to, but you get used to it when your kids stay in the same clothes for a year. 

They seem to be on a growth spurt recently- getting taller definitely and perhaps gaining some weight. But, the little dragons are keeping on their curve at way below the 3rd percentile and things are going pretty well. 

Maisie weighs 21 pounds, and James weighs 20 pounds. 

They are pretty much out of their 9 month and under pants due to length, but as clothes are sized all over the place we try to stick to the tall and skinny brands. 

Last weekend we visited Santa and James wore his Christmas outfit for the 3rd year in a row. The pants fit perfectly finally (it's a 3-6 month outfit), the vest was a perfect fit and the shirt was definitely on the end of its life span. Our first Christmas James went pants-less for most of our photos after wearing a pair of Maisie's ruffle-bum pants that he was not happy with. It's crazy to think just how far we've come. 

Yesterday we went to the spasticity clinic and learned that the AFO's haven't been helping James's feet transition to a more normalized position allowing for proper gait, which affected several of his muscles, limiting his range of motion and creating more hurdles to work through. We determined that he will need more extensive help to prevent his feet from permanently forming into a pronated position. He has made amazing improvements in his strength and abilities with standing/walking, and the AFO's have helped to stabilize him- unfortunately with some negative effects. Therefore we agreed to continue an aggressive therapy plan, do Botox injections in isolated muscles and create better orthotics next month. James will also have another MRI to make sure his spine is stable with no regeneration of the cyst. We are hoping that this will be a step in the right direction for James.

Sunday, November 30, 2014

29 months old & Happy Thanksgiving

This Thanksgiving week we were thankful for a lot. First, for everyone being healthy enough to go to Thanksgiving dinner events for the first time ever. Secondly, for time off of work and the ability to spend lots of time with family. Finally, we were thankful to resolve some very unpredictable well water issues that left us without water in the home for the past 10 days. Ah, the joys of being homeowners! 

Needless to say, we've been a bit busy lately. Here's what the little dragons have been getting into lately. 

Book: Hop on Pop, Five Little Monkeys
Song: "Head Shoulders Knees & Toes", "Five Little Monkeys", & "Five Little Ducks". Currently learning Holiday songs. 
Words: Currently Maisie's into curse words. We are trying to figure this one out. She is also trying to figure out the subjective, objective, adjective and possessive pronouns of the English language. Maisie is also very good at predicting things to come. 
Toy: Dinosaurs 
Food: cheese, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas
Animal: dog, kitty, monkey
Time of the Day: bath time, "Preschool" time (Chalk Preschool online). 
Activity: drawing, singing, jumping, painting, getting into trouble
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 32 inches
Number of Teeth: 19+

Book: ABC by Dr SuessHop on Pop, or any book with a ball in it. 
Song: "Twinkle Twinkle Little Star", "ABC Song" "Row Your Boat". 
Words: James is learning new words every day. He can say complicated sentences like "I'm rolling on the green ball" (while completing the activity). He is also Maisie's copycat, for better or for worse. 
Toy: Ball, shopping cart, drum, flashlight, turtle, seahorse. James loves to conduct a "symphony" by gathering all the musical / noise making toys and playing them simultaneously. He usually leaves to play with a ball and comes back only to restart one of the toys that's stopped playing. It's pretty challenging to listen to, but we try to be thankful that James doesn't have sensory issues with lights and sounds from the NICU like some babies. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, chili, tortillas, cheese. 
Animal: dragon or bear
Time of the Day: playtime or "Preschool" time
Activity: playing with his ball, walking and standing with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, but still wears 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: 31.5 inches
Number of Teeth: 19+

Friday, November 21, 2014

Prematurity Awareness Month

November is Prematurity Awareness month, and as we get further away from the NICU stay and the baby days, the effects of the little dragons' prematurity are less and less. 

However, they will be impacted by their premature birth at 27 weeks, weighing a mere 770 grams. They were classified as micro-preemies, extremely low birth weight deliveries- and with that came a 75% chance of surviving to their first birthday, solely due to prematurity and without even taking into consideration our pregnancy problems due to pProm. 

We definitely beat the odds, but not without a bunch of scars to show the world exactly what kind of a war zone the NICU is. We did not come out unscathed, but we are out and doing our best to stay out of trouble. 

No family should go through a premature birth, though 1 in 9 US babies are born before 37 weeks; over 500,000 births annually. pProm, our reason for prematurity, affects 150,000 pregnancies and is a leading cause of premature birth. There are pProm babies and other preemie births pushing the limits of viability every single day in this country. We've seen viability inch from 24 weeks and 500 grams to 23 weeks, 22, and now 21 weeks and 4 days - with surviving babies. The true quality of life of these extremely premature babies and the impact on their families have yet to be seen or understood - and often won't be for years down the road. The economic, psychological, and emotional costs associated with prematurity are far greater than often the system is equipped to handle. Whole families can fracture under the pressure of prematurity and the expectations after the NICU. The crisis of post-partum depression for spouses and PTSD is very real. These are secondary and tertiary consequences of a premature birth that need to be addressed.  

Prematurity doesn't end when a baby goes home, or when they turn 2. It's a constant battle with PTSD, with weight gain, meeting milestones, hospitalizations and therapy. Prematurity can feel like living on a sand dune, with the winds whipping all around you; eventually things might calm down so that you can make small but seemingly insignificant progress towards the next goal. 

With all of these doom & gloom statistics and challenges are the positives- preemies are the most amazing fighters and demonstrate an unwavering will to live and thrive. They are truly inspiring to be around. If nothing else, going through the journey of prematurity will create a vast appreciation for the amazing ways in which the human body functions and is built to overcome adversity. 

We are proud to be the parents of preemies and we definitely wouldn't have it any other way. This was our journey. We also are diligently working to help other families through pProm, aiming to extend latency and increase awareness of neonatal treatments that can dramatically improve outcomes for babies. 

So, the next time you see a can of food- remember that Maisie and James weighed a mere 27 ounces or 770 grams when born. Large cans of vegetables weigh more. Their heads were the size of baseballs, and they were as long as the serving spoon in your kitchen. Their handprints were the size of a penny and their footprints the size of a black olive. It's hard to gain perspective of how small 1lb 11oz really is. Even I forget.