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!

Blessings,

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

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

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!

6 months, already!

This past week marked 6 months for Rowan and it's very hard to believe how quickly he is growing and changing. We'll be celebrating his 1st birthday before we know it. He has his 6 month checkup at the pediatrician Monday so we'll get to see if he has gotten a little bit taller and maybe a little bit less chunky, doubtful though, just look at his legs in the picture below. He just started eating oatmeal this week so once things really get messy we'll post some pictures.

The family travelled to Indiana at the end of May and Rowan was a champ in the car. I think the vibration of the car humming along the highway made him very sleepy because every nap he took was about 2 hours. We spent the night in Omaha with the Mendlik's which split up the trip nicely. Rowan had a lot of time with all the grandparents who loved every minute. 

A week from tomorrow, June 24th Rowan will go under anesthesia to have a full MRI of his brain and spine. He needs to sit still during the MRI to facilitate good pictures. He also was never circumcised because of all the activity with his surgery after birth and the urologist wanted to wait until 6 months so he will also undergo that procedure at the same time. Pray for Rowan as he undergoes anesthesia.  At 4 weeks old it took him a few days to recover so we are hopeful he handles it better this round. It is an outpatient procedure so we should be sleeping at home next Monday. We will see the Spina Bifida clinic Thursday next week to see the results of the MRI and will update then.

God Bless,

Kyle, Stephanie & Rowan

6 months!

First Family Pool day while in Indiana

Rowan ready for his turn at the wheel on road trip

First family hike on Father's Day up Chief Mountain

Forget Spring, Summer has Sprung!

April brought snow to Denver every week, typically on a Monday. Somehow Colorado decided that we didn’t need a spring this year so we skipped 65 and sunny and went from 8 inches of snow to 85 degrees. So now that’s its warm we have been taking advantage of it!

We started off the month of May with the Walk-N-Roll that we have talked about many times before. We blew our goal of $1000 out of the water and raised an incredible $1495 for the Spina Bifida Association of Colorado! Pretty amazing so thank you so much to all of you for your generous donations. We had Kathy and Ashley with us on the walk plus several friends from Denver joined us for the stroll around Wash Park. The event allowed us to connect with some other families affected by the disease and Stephanie made a few more mom connections in Colorado.

Grammy Buck, Aunt Ashley, and the family at Walk-N-Roll 

The Whole Walk-N-Roll Crew. Thanks!

May 12 marked 5 months for Rowan blessing us with his presence. He dressed up in a bow tie for the event. (Thanks Leslie for the sewing)  Nana and Papaw Thomas spent 4 days with us in May and provided a lot of grandparenting help. We were able to plant our spring flowers, prepare the herb garden, and host a baby shower. We have had quite the stream of visitors with the Bucks, Thomas’ and most recently Kevin and Sheri Carlstrom spending time with us. We love having visitors and we don’t have any reservations at the Thomas Chalet until August so come on out!

5 months, as studly as ever, and a healthy 17 lbs!

Nana & Papaw Thomas enjoyed every minute with Rowan

Happy Mother's Day to our wonderful Mom

We are planning to drive to Indiana May 28th, still not sure exactly how this will work out. I think it's likely we'll turn around at the Nebraska border and drive to DIA and purchase plane tickets. Stephanie and Rowan will spend nearly two weeks in Indiana. We will celebrate our 7th wedding anniversary in two weeks and are hoping one of Rowan's favorite aunts will volunteer to babysit so we can have a date night.

Rowan continues to be a very happy boy and he's sleeping better. He is very healthy and is now going to Physical Therapy every two weeks and showing great progress. We continue to feel very blessed to have him in our lives and thank all of you for your prayers and support.

Kyle & Stephanie

Final Fundraising Push

The Walk-N-Roll is quickly approaching 1 week from today and thanks to your giving we have nearly reached our fundraising goal. We hoped to raise $1000 and we currently have $950! Who wants to help make the final push to our goal? I actually think we should far surpass our goal over the next week so help make it happen!

https://www.firstgiving.com/fundraiser/StephanieThomas/2013

Last week Rowan had his 4 month checkup and the pediatrician thinks he's doing fantastic. Our chubby little man grew a little bit taller in the past 6 weeks now registering 15th percentile for height improving from 2%. He took the immunization shots like a champ. This past Friday we had our first physical therapy appointment. We met with a pediatric physical therapist who gave us a list of exercises and activities to perform with Rowan daily. We have a blackboard in his room with his daily workout of baby calisthenics,  sit-ups  and standing exercises. He's already taking after dad trying to get in his workout every day. Our biggest challenge currently is sleep, or lack-of I should say. Rowan has decided he doesn't care too much for sleeping at night. He has been waking up every 2-3 hrs for the past 4 or 5 nights which is making the whole house quite tired. Steph is becoming quite tyrannical at  keeping him to a nap schedule during the day hoping to get him back on track.

We continue to feel incredibly blessed to have Rowan in our lives. Thank you for your prayer and support for our whole family. Look for our next update after the Walk-N-Roll to have our final fundraising total and pictures from the event.

Ready for Workout!

Spina Bifida Clinic Update

Rowan met with all of his specialists Thursday and received a great report.  The neurosurgeon was very happy with his progress and measured his head to exactly 50% which is great. At 6 months he will have an MRI of his head and back to help us get a better look at these structures. The worst part will be going under general anesthesia. The urologist didn't see any need to catheterize Rowan at this time which is a relief to us. Both orthopedics and rehab were very happy to see him kicking his legs.  His hips appeared very stable and he had full range of motion in his legs. They took a pretty close look at all the muscle movements and were extremely pleased.  The rehab doctor said "His movement is as good as I've seen in any child with this condition" which of course we were incredibly happy to hear. So overall a great appointment, we'll see them all again in June.

We recently registered for the Spina Bifida Walk-N-Roll fundraiser walk in Denver May 5. Grammy Buck and Aunt Ashley will be visiting that weekend so we will all be walking in Wash Park that morning. We welcome donations to the event through Stephanie's fundraising page. Our goal is to raise $1000! We know there are many of you who read this blog and ask that if you are able to donate $25 or $50 we would really appreciate it. While we are incredibly thankful for Rowan and think he is amazing we certainly don't wish this disease on any child and hope to be a part of the solution to reducing the incidence of the disease and improving the function of children with the disease.

https://www.firstgiving.com/fundraiser/StephanieThomas/2013

Thank you all for your continued prayers and support. Each day is a blessing with Rowan and we feel proud to be his parents. 

Blessings,

Kyle & Stephanie

Hello Friend! Would you please donate to the Walk - N - Roll?

Daddy Reading Time

What a desirable pair!

Rowan's Dedication

Time is flying by and little Rowan isn't so little anymore.  He is now over three months old and is a bit chunky at 15 lbs.  I measured him last night and he has grown 5 inches since birth and weeks ago doubled his birth weight.  We visit the Spina Bifida clinic next week and Rowan will have a renal ultrasound to look at his kidney function.  There isn't really anything to update concerning his health. He continues to do very well and is an extremely happy boy.  He has settled into a fairly predictable routine and is sleeping well.  The most fun time of the day is morning when he is especially happy and smiles a bunch.

Two weeks ago we traveled to Indiana to visit family and have Rowan dedicated at Sonrise.

"For this boy I prayed, and the LORD has given me my petition which I asked of Him. "So I have also dedicated him to the LORD; as long as he lives he is dedicated to the LORD." And he worshiped the LORD there. 1 Samuel 1:27-28

We felt it would be very meaningful to have Rowan dedicated at the church Grandpa Buck pastored for 25 years.  It was a great celebration and time with family.  We had Casa's for lunch because we just can't find an equivalent in Colorado. 

The Milk Monster is 3 Months Old!

Dedication with Scott

Second Cousins or something?

Buck Family

Fosnough Family

Thomas Family

On our way to Indiana

We all three are sitting in the Denver airport waiting to board a flight to Indy. It's our first experience flying so we're hoping for the best. I always get really frustrated when there's a baby next to me on a flight. I guess perspectives change with time. Now we'll be the ones making rows 12-16 really excited for their flight.

We will be spending some time in Indy with the Thomas family and attending a funeral for Kyle's Grandpa Thomas Saturday before heading to Fort Wayne.

We know many friends and family from Fort Wayne and Sonrise have prayed for us and followed our story. Rowan will be dedicated at the 11 am service at Sonrise Sunday so we would love for you to meet him Sunday morning. Prayers for health for Rowan and some sleep for us all with the disrupted schedule.

Rowan the TV Star

The past few weeks have been quite eventful for Rowan.  Steph has arranged a social outing essentially every day.  I think Rowan has already done more laps around Wash Park than I have.  He enjoys riding in the stroller and being outside and told me that he is really excited to meet all the cute baby girls he sees riding with their moms. He also enjoys eating and is having no issue gaining weight. In two weeks he'll have his next checkup with the pediatrician to see how his growth and any other baby things are coming along.

This past Thursday was the first spina bifida clinic for Rowan.  He saw the neurosurgeon, urologist, and rehab doctor.  All were very pleased with his progress.  Stephanie really wanted a list of activities, stretches, exercises, etc. that she could work on with Rowan but the advice of the whole team was to work with him just like any other baby, nothing extra to do at this point.  His stitches have dissolved from his head and he continues to be a very happy boy.  We will visit the clinic again at the end of March.

About a month ago we met with the PR director of the Rocky Mountain Hospital for Children and she wanted to share our story with the public.  She made contacts with a few news media outlets and this past Friday Rowan was featured on the Fox nightly news. It was a pleasure to share our story and we hope that other families facing the journey we have been on will see the story and be encouraged.  The link is included below.

http://kdvr.com/2013/01/25/denver-surgeons-make-breakthrough-in-treating-newborns-with-spina-bifida/

That's a cute duo!

January 12th marked 1 month old

Story Time! 

Discharged and heading home

After a night of little sleep for us all we are very much ready to head home. Pretty amazing how 24 hrs ago Steph and Rowan were walking into the pediatrician and now we're heading home after surgery. Rowan started eating early this morning and seems to be returning to his normal self. We will try to return to our normal routine today and get this kid sleeping and eating on a schedule. Thanks for all your kind words and prayers.

4 weeks old and back to surgery

Rowan is 4 weeks old today and unfortunately spent the day seeing the pediatrician and neurosurgeon. Thanks to a very caring and attentive mom Steph noticed a few signs showing that his shunt might not be functioning correctly. After a quick assessment by the pediatrician Rowan saw the neurosurgeon who felt his condition warranted surgery. His shunt wasn't draining correctly so a portion that was clogged was replaced. Certainly not what we hoped for today but he's doing well now. He's still waking up from anesthesia and we'll all three be spending the night at the hospital. We should go home tomorrow. Please lift up a prayer for Rowan that he wakes up calmly and starts to eat.