Friday, September 12, 2014

Rowan's having a shunt revision

Friends & Family, Rowan has been having occasional episodes of feeling bad for the last few months. He will have headaches and act very tired and typically after a nap he feels better. We've been suspecting that his shunt hasn't been working properly for a few months. After a few more prolonged episodes we asked the neurosurgeon to schedule an MRI. He had the MRI this morning and it showed enlarged ventricles so a shunt revision is necessary. He will be having surgery tonight at 8pm. We ask you to say a prayer for him and the whole family. Stephanie will spend the night at home with Huxton and I'll stay overnight with Rowan at the hospital. 

Rowan might be wearing lots of hats to hide his bad haircut after surgery.
Huxton says "get well brother"

Friday, June 27, 2014

18 months

Just a few weeks ago we celebrated 18 months with Rowan by going to Steph's favorite new deli, Olive & Finch. I suppose Rowan seemed to like the food as well so it wasn't such a bad deal for him. One of the biggest milestones for Rowan near the 18 month mark has been crawling. Just a few days before Memorial Day he was sitting on the ground and spotted an errant raisin leftover from lunch and decided he wanted to track it down. He army-crawled his way over and victoriously ate the raisin. And as easy as that he was crawling. It's been great for him to be able to move, explore, and make messes like all kids are supposed to. By far his favorite activities are opening drawers and cabinets and pulling on cords. We've been a little lazy with baby-proofing with Rowan being relatively immobile but things have become a little more involved in the past month.

The summer has brought a flurry of social outings between the pool, Children's museum, Zoo and play group. Living in a small apartment means you need to go outside a lot to keep sane. Steph and Rowan had a great trip back to Indiana in June and we all were in Durango over Memorial Day watching dad race bikes.

Rowan's personality is starting to shine through more every day. He continues to be an incredibly joyous boy but also knows how to throw a fit. You certainly don't have to teach a kid how to protest eating vegetables. Over the past few months he has learned that he is entitled to an opinion. His tastes in food have changed from "I'll eat anything" to "I'll eat anything as long as its bread or cheese or ice cream."

In the past week Rowan had his spina bifida clinic and his 18 month checkup. His hip dysplasia continues to improve and he will wear his brace at night as a precaution for the next 6 months. Nothing else out of the ordinary in terms of his health. We are having a new set of AFO braces made as he is growing out of his first pair after 4 months. Now that Rowan is moving around so much more he has thinned out a bit. He actually didn't gain any weight between 12 months and 18 months so per the pediatrician's orders he's eating a little extra.

In the past few weeks we transitioned to in-home physical and speech therapy. It is very convenient to have the therapists come to our place, especially with a new baby coming soon. So far the therapists have been great and are seeing him almost twice a week.

This weekend marks 35 weeks in Steph's pregnancy so most likely the next time we publish an update it will be to introduce Rowan's newest sibling! This will be a big adjustment for Rowan. He is very accustomed to having mom's full attention but we know a sibling close in age will be great for both Rowan and baby T.

God Bless,
Kyle, Stephanie, Rowan & Baby T

Hello Everyone, I love the Zoo

What is going on with Mommy's belly?

My Rocket Rider from the physical therapist

OOOOOOOHHHHH, My new favorite face

Sunday, May 11, 2014

Walk 'N Roll 2014

Last weekend our family participated in the Spina Bifida Walk 'N Roll in Wash Park. We made the 2 mile walk around the park and talked to several families that Steph has connected with through her moms groups. It was a great chance to see some other families while raising money for the Colorado chapter of the Spina Bifida Association. Thanks to all who contributed!

The last month has brought about quite a few changes in Mr. Rowan. After months and months of attempting to teach him sign language finally something clicked so anytime Rowan sees food he starts signing "more" and "eat." He still isn't able to crawl forward but has figured out how a combination of rolling, backwards crawling, and moving side to side can pretty much get him where he wants to go. His favorite activity is opening drawers and emptying them. Pretty soon we are going to need to invest in cabinet door locks.

Rowan has been working more on steps and has special braces to help support his legs during walking. He is able to stand for much longer and especially enjoys playing at the playground. Next month we will go to spina bifida clinic to have another look at his hips and bladder function. We continue to have physical therapy every few weeks and while at times the progress seems a bit slow he is definitely gaining more strength and moving around more. It's about 3 months until Rowan is a big brother which is quite a scary thought. However, we are very excited two have two little ones close in age to be good buddies.

Kyle, Steph & Rowan
Rowan walked across the Finish to a host of cheers

Play time at playground
First Family Hike of the season

I love Easter Eggs!

Monday, March 24, 2014

Braces, Moving Day, Big Brother!

In the fall we decided it was a good time to think about expanding our family. We both wanted to have a brother or sister for Rowan so why not just knock it out while the baby phase hadn't worn off yet. In November Steph showed me a stick with a plus sign on it, well that didn't take long. So, come August 3rd we will be expecting a new member to our family. It is certainly exciting and brings back memories from when we found out about Rowan which wasn't really all that long ago. With a growing family comes needs for more space so we decided to list our house and well that didn't take long either, two days to be exact. 

We are currently writing this message from our temporary apartment while we build a new house in our neighborhood. We are actually only moving about a mile from where our old house was, just a little ways west in the same neighborhood. Realizing that Rowan has some specific needs we felt that building would offer us the best option for providing him independence and space. Rowan will have his room on the main floor with an accessible bathroom and a ramp to the garage in the back. We are roughly doubling our lot size so there will be a nice sized back yard for the kids to play in (kids! crazy) and a nice park just two blocks away. We hope to be in the new house by September.

Rowan has been amazing us lately with how much he has grown. He seems so tall when he is standing. For such a long time he wouldn't stand up so I think it is just the appearance now when we see him upright that throws us off. He still isn't able to stand unassisted but is growing stronger every day. A few weeks ago Rowan received his first set of AFO braces which really help to stabilize his ankles and help him stand. We work on standing every day and he is making progress.

In January we had spina bifida clinic where we found out that his hip dysplasia had drastically improved. He is still wearing the brace at night just to be safe but his last x-ray looked perfectly normal. He continues to work with PT and has a walker that he thinks is more of a fun toy than a tool to help him move around. His kidneys didn't show any reflux and he hasn't had an urinary tract infections so he was able to drop his antibiotic and so far so good there. He will be checked again at 18 months and for the next few years will just go every 6 months. Overall his health is great, we just keep working on physical strength. As he gets bigger and as Steph's belly gets bigger its becoming a little more challenging to work on his standing.

Please pray for Rowan to continue to develop strength and to be motivated to work on exercises. Pray for our new Baby T and Steph as she adjusts to pregnancy with a toddler. We had our 20 week ultrasound last week and the baby looks very healthy.

God Bless,
Kyle, Stephanie, Rowan & Baby T #2

First sledding day, Loved it!

Another Thomas is on its way

I'm pretty excited to be a big brother!

Hey Check out my new braces!

Wednesday, December 11, 2013

365 Days of Rowan

A year ago today Stephanie and I looked at each other and said, "are we ready for this?" It's a little more relaxed birth experience when you have a planned c-section, not the crazed drive to the hospital you see in movies. We arrived at the hospital at 5:30am and by 9:59am we met Rowan. It's been a year of great joy for us. We love Rowan very much and have enjoyed every minute of this past year coming to know him more and more. A newborn Rowan seems so long ago at this point. In preparation for his birthday party we printed out his monthly pictures. He looks the same to us but its rather amazing to see in photos how he has changed over this year. He's three times the boy from when he was born. Last week we weighed him at 20.5 lbs compared to the 6lbs 8 ounces at birth. 

The past year has been marked by many milestones for Rowan but yet many more challenges ahead. He has already been under general anesthesia more times in his first year than Stephanie and I have been in our lives combined. He continues to work on his muscle strength with physical therapy. We will be visiting spina bifida clinic in January and he will be fitted for braces and likely some sort of walker. For the past few months Rowan has been wearing a hip brace because he has slight dysplasia in his left hip. We will see a new x-ray to see if the brace has helped form his socket to be deeper. Rowan has been taking ditropan, a muscle relaxer, for the last few months as well. He has an overactive bladder and the ditropan relaxes the bladder so it fills more fully. These issues all seem to be rather consistent in children with spina bifida.  

As he approaches his first birthday we are asked frequently if he's walking, crawling all over, causing trouble at home and well he's not. A one year old should start to walk and Rowan isn't even close. He is becoming stronger and working hard but is certainly on his own timeline. We continue to pray for Rowan to experience healing and for his body to grow in amazing ways. Rowan is a very happy boy and loves to laugh. It took him a while to take a liking to food but he's really into it now. He enjoyed everything on Thanksgiving, especially sweet potato casserole. Just this week he has started drinking whole milk and he's quite the milk monster.

We are very excited for his next year and look forward to seeing Rowan grow and develop. We ask for continued prayer for his health. In January we will have more information on his bladder and hip and hope to hear positive news for both.  Merry Christmas!

Kyle, Steph & Rowan

It's been real cold in Colorado so we've been sledding inside
Rockin' the hip brace

Working hard with dad at PT

Friday, September 13, 2013

9 Months!

Mr Rowan Stanley celebrated 9 months yesterday! We had his 9 month checkup at the pediatrician today and have some new data on Rowan's growth. He continues to be on the short end of the spectrum but is growing as he now takes up the whole changing pad from one end to the other. He's weighing just shy of 20 pounds and albeit chunky he is thinning out a bit as he's more mobile and using more energy. Overall he had a great checkup and is progressing great. He isn't loving solid foods so much so that's our homework over the next few weeks. He now has two lower teeth so he's ready to munch of some food once he becomes comfortable with the texture. Every time we give him solids he makes these horrible faces like we are poisoning him.

We will see the spina bifida clinic in two weeks to checkin on his progress. He is now taking an additional medicine to help his bladder function and we'll probably have his bladder retested this fall. We're still working on a lot of exercises with physical therapy and he is progressing slowly. He sits well independently but doesn't love to stand so we try to work on that as much as he'll allow. We have noticed that he wears out quickly because he is working very hard during the exercises. He has a great demeanor and loves to smile. He is quite the babbler, especially in the morning and his favorite word is da-da which makes me quite proud. He loves books, I think his favorite activity is to sit in our laps and read.

Rowan has been quite the traveller heading to Indiana twice this summer. We have done several trips to the mountains, a week in Frisco with Nana and Papaw Thomas, and most recently a weekend in Steamboat Springs cheering me on in a bike race. He enjoys traveling as long as he can nap. We have enjoyed a wonderful summer together spending time at the pool, hiking, walking, and swinging. Before we know it we'll be celebrating his 1 year birthday. We're planning on a castle bounce, clowns with balloons, a puppet show and pony rides. Well, maybe just a cake.

Continue to pray for Rowan as he develops and grows. Pray for Stephanie and I to have patience with Rowan and to keep encouraging him as at times we feel he is progressing slowly physically especially as we see other kids his age crawling, standing, moving much more. We are certainly very proud of him and love him very much and want him to progress and be his happy self.

It's fun to play with... just don't stick it in my mouth!
Cheering on cyclists with my bike shirt on
Buck Family
Thomas Family in Frisco
Family Hike in Vail

Saturday, July 6, 2013

Happy Independence Day!

Greetings from Snowmass, Colorado! The Thomas family celebrated Independence Day this year in our favorite Colorado spot, Aspen. We camped two nights, one night along Maroon Creek, which was quite amazing. We have been staying in Snowmass for the past two days before heading back to Denver tomorrow. It has been a great escape for us. We have enjoyed family hikes, swimming, parades, concerts, campfires (No fire ban here!) and Steph has enjoyed shopping while I have had some nice bike rides. 

We almost didn’t make the trip.  The day before our departure we noticed excess fluid around the catheter site on Rowan’s skull. We had the neurosurgeon check it out and she said it isn’t entirely uncommon but to keep a careful watch and be ready to drive back to Denver if Rowan starts acting off and showing symptoms of a shunt malfunction.  Thankfully he has been his typical happy self.

We had spina bifida clinic last week and saw the results of his MRI. As expected, there is a lot of dismorphic anatomy but nothing the neurosurgeon was concerned about or is abnormal in a child with spina bifida. There are no further MRIs scheduled and if issues arise in the future the pictures we have will be used as a baseline to see if anything has changed. Rowan continues to recover well from his surgery and the other specialists felt he was doing great. He continues to see physical therapy every two weeks and we are learning some great exercises for him, many involving him standing up.

Please join us in prayer for Rowan’s shunt to continue functioning as well as us as parents to identify the signs that he needs medical attention. We have been able to feel the pressure changes in his head and around the shunt and are praying for things to return to normal. Unfortunately the only way to repair a malfunctioning shunt is to perform surgery.

Happy Independence Day. Enjoy the remainder of your summer. God Bless.

Kyle, Stephanie & Rowan

Rowan loves to hike! At Crater Lake
It's very tiring hiking up the trail on Dad's back
First camping trip!

Family in front of Maroon Bells
Awake and happy after surgery

Recovering with Mom
Pool Day!