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

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

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.

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!

Our Blog & Our Goal

We set up this blog to keep our family and close friends posted on Kennedy during her time from the day we suspected a problem to each and every follow-up appointment following surgery. They day I received the news that we need an MRI, I was alone at Kennedy's 9-month well-baby check-up. I had no plans to hear the news I was about to hear. I couldn't reach Nick on the phone and both of our parents encouraged us to be calm and wait to see what the test reports said. I knew they were right but in my heart of hearts, I knew what the diagnosis would be. All of our internet research appeared to confirm the outward markings on her body and then eventually matched the wording from the MRI report. But with that said, the internet proved to be very scary for us. I laid awake many, many nights wondering what TCS was, how it related to Spina Bifida, Spina Bifida? My child might have Spina Bifida? Will she be able to have a normal life? a boyfriend? play sports? etc. Seriously, the agony and worry went on and on. Being a mother is a blessing but for those short weeks from potential problem to surgery date, the burden of worry was strong.

The internet scared me in so many ways! I could not find one story where a child with my daughter's potential diagnosis came out OK. I feel and hurt for those families whose child has suffered, and in turn, whose families have hurt. I thought there was no way Kennedy would have a normal life. How could Dr. Fuchs steer me wrong?

This blog is to show other families that hope is out there. Since the time I started it, I have been contacted by four families about to endure the same surgery and each one has thanked me for the relief my blog has shared. These contacts have been some of the most meaningful contacts I have ever made. I want to wish their babies/children a healthy and happy future.

Today, Kennedy is almost 13 months old. She is walking, saying several words and occasional phrases, imitating us regularly, dancing to every hip/hop or rap beat she can find, kissing her Elmo and babydoll, talking on Skype to her grandparents, and living a completely normal life. We are reminded of her events only by the scar on her back when exposed during diaper changes and bathtime.

We are aware that the 40% chance of re-tether could be in our future. But today, we live our life without fear and with a renewed sense of fulfillment. I challenge you to do the same thing. Be incredibly thankful for your loved ones and let them know it. Don't just say it, feel it. Everyday I look at Kennedy and get excited at how great life is. She brings me the joy I never knew I was lacking! I love my little family.

12 month check-up

Just a quick update to let everyone know (and to give hope to all of you other TCS parents who like I, had only read sad stories on the internet) - Kennedy had her 12 month check up this past Friday and our doctor said developmentally, it's as if nothing ever happened to Kennedy. She is right on track! AMAZING!!!

Kennedy's next appointment at Duke is June 22nd. She will have a follow-up MRI followed by an appointment with her neurosurgeon, Dr. Fuchs who will read the report that day. Nervous, but confident and wishing for the best!

No Place Like Home

We are so happy to have our precious little girl home. We got home late Sunday afternoon and are SO much more comfortable now. We were instructed to change her bandage after 2 days, which was yesterday. After that, we are to change it every 5 days and then leave it open to the air for good. Her scar seems HUGE - 4 inches approximately and UGLY but our dear nurse mothers say it looks good, properly healing.

It's truly amazing how quickly she is recovering and I want other TCS parents to be prepared how quickly it happens and how utterly amazing it is. She is not herself 100% yet. She is more shy around strangers than she used to be, cries out in pain when she moves in certain ways, and is no longer walking independently; however, we've only been home for 3 days! It's coming fast and she'll be just fine before we know it.

As for now, home directions include dressing changes, no soaking (bath or pool) for 2 weeks, no shower for first 2 days, no lifting more than 5 lbs (hahahaha) and no strenuous activity. She is loving her Nana & Papa (saying both now) and the ice cream and tickles that come with them.

Thank you for all of the well wishes and prayers. We have our first follow-up appt at Duke with Dr. Fuchs next Tues (May 3rd). We'll keep you updated! Sorry for the delay, I've been busy catching up on baby snuggles!