Baby Kennedy

Baby Kennedy

Wednesday, April 3, 2013

Almost 2 years post Op

Amazing! April 2013 brings us to the month of 2 years post op following Kennedy's Tethered Cord Release surgery. As we prepare for her 2nd set of tubes for her ears, I find myself completely calm about this surgery. It is NOTHING compared to her TCS surgery.

In September 2012, we were released to 1-year appointments. Amazing! Kennedy has no continued concerns. She just has a scar and a simple on her tush. She runs, jumps, flips, dances, and plays like all other children her age!

I continue to subscribe to TCS blogs and my heart reals for other families starting on the process we began 2 years ago. I hope in some small way, Kennedy and this blog can serve some peace of  mind to those Mommies and Daddies whose nerves are shot! We send our love and our best!

Sunday, April 8, 2012

Remembering last Easter...

As I sit by the beach on this beautiful morning, remembering where we were last year for Easter is not far from mind. Last Easter, our little family spent much of the holiday at Duke Children's Hospital following spinal cord surgery. I remember feeling much joy that my daughter was being discharged from the hospital but I also remembering a lot of fear to take my fragile daughter home with this massive wound on her back. I was afraid to hold her, let anyone else hold her, and even to lay her down for a nap.

Today she's swimming, jumping, and following her cousins around as fast as she can. My heart and prayers are with all the families at Duke this Easter. We send our best wishes that tomorrow will be better.

Monday, March 19, 2012

One year post diagnosis

Wow! Crazy to think that one year ago we had just learned of our daughter's tethered spinal cord diagnosis. Today, we run, jump, play, tickle, and celebrate every milestone! Kennedy's latest fascination is running up and down the hallway of our new home shouting "Kennedy fast!" To all of the other tcs parents out there awaiting your surgery, breathe. Despite what you read on the Internet, there are good outcomes. Trust yourself and your decisions. Although our story is a successful one and I want to share that, my heart hurts everyday thinking of others going through the constant struggle associated with this diagnosis. My platform is early prevention when possible. For my family, it was the right decision.

In the past year, Kennedy had her tcs release surgery at Duke Children's Hospital which required a week stay, which five of the days were laying completely flat. After that, Kennedy had another MRI to view the healing and to get a baseline for her after-surgery status in case we are ever concerned about future symptoms associated with retethering. We had a few three month follow ups and most recently six month appointments with hopes of being released to yearly appointments in September. Today, people would never know Kennedy had surgery unless they see her scar or hear me talk about it. Kennedy is not in pain and is advanced in developmental milestones.

The past year has also consisted of another struggle, thought we realize everyone has their own important struggles too. After several surgeries and procedures, I ended up being diagnosed with Ashermans syndrome and had to have a hysterectomy this past November. I'm feeling better everyday and am thankful for my health. My emotional journey has been difficult in 2011 but I genuinely adore my family, my life, my friends, my career, and my health and beyond that... I don't worry!

Love to you all! Thank you for all of our love and support! We couldn't have made it here without you.

Tuesday, December 13, 2011

Our hearts & prayers...

Our hearts and prayers go out to a very special family we've been in contact with. Their little guy had TCS surgery like Kennedy and the family just found out that he retethered. I have read there is a 40% chance this can occur and my heart hurts for this family as they have to go through this experience again. Good luck. We know how strong you are little man and we know you can do it! Kennedy sends hugs and kisses and please give your Mommy a big hug from me! Love, Martha

Saturday, October 1, 2011

6 month check-up? BEE-EEE-EEE-AUTIFUL

Way to go Baby K! High five TEAM COLLER! Dr. Fuchs reported that Kennedy looks better than expected following her TCS Release Surgery last April. He watched her walk and run and examined her incision site. We have worried about her turned-in foot when walking but he says it has improved and assures us there's no need to worry about that right now. Her recent potty interest and usage was a big surprise to him too.

He provided us with the signs to look for regarding re-tether but really felt it would not be an issue for Kennedy. The signs are: low back pain, urgency to urinate, constant leaking, and increased clumsiness. We go back in 6 months - March 28th. This is a great sign since we have previously been on a 3 month check up schedule.

We love you big girl! Thank you for making us proud and being so tough! "SHOW US YOUR MUSCLES! RRRRRR"

Hugs & Kisses (always),
Mommy & Daddy

Monday, July 4, 2011

Original Spinal Marker

Here is a picture of Kennedy's spinal marking when she was almost 2 months old. It was on her low spine. I'm trying to be somewhat discreet in the picture. She was born with this marking. This picture may serve as a good reference to other parents researching TCS.

Tuesday, June 21, 2011

Another MRI tomorrow

Feeling nervous about Kennedy's MRI which is scheduled for tomorrow. Hopefully, it'll be the only one she needs. Dr. Fuchs wants to get a good look at how things look in there now after all the healing. It can also be used as a baseline if future symptoms ever present.

Yesterday, Kennedy found her scar and walked around pinching it and pulling at it. I can't help but hope that it's not hurting her. I imagine she just feels something new.

Thursday she goes for an ENT referral at Duke. Busy week!