Connor’s Journey: An Update

Posted On: 07/31/2014

By: Becky Miller

Editor’s Note: This May Connor Miller was featured in a KSTP Story. Click here to watch it now and then catch up with Connor below.

Connor is an energetic, (very!) opinionated and happy one-year-old.  He has a zest for life that is difficult to explain in words.  Perhaps it is because of the physical challenges he has had to overcome, or perhaps he simply loves life.  Regardless, his energy and excitement are contagious – it is almost impossible to avoid smiling when he is near! 

Connor’s journey at Gillette began when he was just 1-month-old. Throughout the past year, Connor has accomplished some pretty amazing things -- he learned to crawl, a milestone that we were unsure he would ever achieve, he celebrated his first birthday, he learned to walk, and, most importantly, he made it through another surgery at Gillette! 

At our visit with Dr. Van Heest in April, she observed that Connor’s use of his wrist and hand remained relatively limited and unchanged since our previous check-in. She explained that, as a result of his previous injury and surgery, Connor had built up a significant amount of adherent scar tissue in and around the tendons in his wrist and hand. She recommended that an additional surgery be performed to remove these adhesions, in hopes of significantly improving his ability to actively use his left arm and hand.  This surgery, his third at Gillette, was completed on July 11, 2014.  Dr. Van Heest was able to remove a significant amount of scar tissue and we have already seen improvements in Connor’s passive and active range of motion!

After a brief break from occupational therapy to allow his incision to heal, Connor restarted twice-weekly OT visits. As a somewhat stubborn (have I mentioned opinionated?) one-year-old, these visits are proving to be more difficult than they used to be.  As he continues to get older, he wants to play and he most certainly does not want anyone touching his arm! We are extremely grateful for the wonderful care and patience that his OTs, Alex and Lindsey, show toward him during his visits. They know his personality well and are great at finding creative ways to both entertain him and address his therapy needs.

As we think about Connor’s future (which we do a lot!), whether or not he will need additional surgeries is unknown. What we do know, however, is that he has a fantastic team of medical professionals standing behind him to help guide our family in making the best decisions on his behalf.  We are, and forever will be, incredibly grateful for the amazing care that he receives at Gillette!


 

 


My Gillette Story by Becky Miller

Posted On: 01/08/2014

When Connor was born prematurely at 35 weeks, it was discovered that a blood clot had formed in his upper arm, leaving him with severe muscle, nerve and skin damage. Originally, doctors thought amputation was likely—but were then able to heal his arm so that a skin graft could be performed at Gillette Children’s Specialty Healthcare. The skin graft was a resounding success!  Conner’s pain levels decreased dramatically and he was able to finally begin experiencing life. Read more about Connor below.

How would you describe Connor to someone that hasn't met him?
Connor is a happy, energetic and strong 8-month-old. We are often told that he is “the happiest baby in the world” by those who help care for him.  He has a genuine passion for life that is most notable when being entertained by his big brother, Parker.  Nothing in the world can bring about belly laughs and smiles the way that his big brother can.

What are Connor's favorite things to do?
Connor adores watching his big brother play. Whether wrestling with Daddy, playing with (loud!) toys or reading books, Connor always finds a way to tell us that he wants to participate in the fun!  The joy on Connor’s face when he sees his big brother cannot be described in words.  Connor also enjoys his Jumperoo so much that we often find him trying to “jump” during other activities.  Connor also thinks that toys that shake, make noise and/or light up are pretty amazing!  His favorite toy is his “Bat & Wobble Penguin.”

What is your Connor's medical condition?
Connor was born prematurely at 35 weeks as a result of pregnancy complications.  Upon birth, it was discovered that Connor had an arterial blood clot that had formed in his upper arm, due in part to a genetic clotting disorder called Factor V Leiden.  Doctors were unsure exactly when the clot formed, but they believe it was present for several weeks prior to birth.  As a result, blood flow to Connor’s lower arm and hand was almost entirely restricted, leaving him with severe muscle, nerve and skin damage.

How did your family find out about Gillette Children's Specialty Healthcare?
Several Gillette surgeons were involved in managing Connor’s care while he was in the NICU.  Initially, the team of specialists following his case thought amputation was likely.  However, the team caring for Connor was miraculously able to heal his arm to a point that a skin graft could be performed. We were referred to Gillette for Connor’s skin graft and were told it was THE best place to be for the type of care that he required.  After spending the first month of his life in the NICU, Connor was admitted to Gillette for a skin graft. The graft was completed by Dr. Robert Wood when Connor was just over 1 month old and it was a resounding success.  His pain levels decreased dramatically and he was able to finally begin experiencing life!

What kinds of treatments and services has Connor received at Gillette?
Following Connor’s graft, mobility and use of his left arm from the shoulder down remained extremely limited.  In the months since his surgery, Connor has been under the care of Dr. Wood, Dr. Ann VanHeest and the amazing occupational therapy and physical therapy teams in rehabilitation therapies.  He is working with his physical therapists to correct a mild case of plagiocephaly and torticollis that were a result of him relying heavily on the right side of his body due to his injury. His occupational therapy appointments have focused on regaining range-of-motion and use of his left arm and hand.

What has your experience at Gillette been like for Connor and your family?
The surgeons that Connor has seen have done a great job managing his care.  The OT and PT team members have been friendly, caring and honest with us throughout Connor’s journey.  We are grateful that his young age has not been a limiting factor in the types of treatment that Connor can receive – splinting has been a big part of Connor’s therapy and it has proven to be a challenge for such a small arm/hand.  Through our challenges, the OT team has listened to our struggles and concerns with compassion and has always worked to find a way to make the rehabilitation process as easy and painless as possible – for both Connor as well as Mom and Dad 

Does Connor have a favorite doctor, nurse, therapist or other caregiver?
Connor adores his OTs (Lindsey A., Alyssa & Alexandria) and PTs (Michelle and Lindsay) – they are always able to bring out a ton of smiles from him during his therapy appointments!

What about Connor makes you most proud?
Connor is a fighter in every sense of the word – he has overcome so many obstacles in his short life.  While he is still too small to tell us in his own words, Connor’s non-verbals indicate that he is stubborn, persistent and driven. He has already, and will continue to, overcome any obstacles that stand in his way!