A much-delayed update… All went well with Colten’s surgery. They were able to get in laparoscopically and do part 1 of 2. Part 2 will take place in about six months. Unfortunately part 2 cannot be done laparoscopically due to all the shunt tubing in Colten’s abdomen. So he’ll get a nice long incision straight down from the belly button during that surgery. (No idea what I’m talking about? See our previous post!) He had one minor incident after surgery when one of the laproscopic entry points, which were steri-stripped closed, kind of sprung a leak. We tried re-sealing it with bandages we had but it kept soaking through everything. After a late-night trip to the local ER, he had a nicely sealed incision once again.
What else is going on in Colten’s world? He’s crawling all over and it’s adorable to watch. He swings his hips and butt in such an exaggerated way. Part of this, we think, is because he doesn’t have the strength and stability to keep his body up and stable like a typical crawl. Let me tell you – that kid is FAST. He continues to perfect his butt spin and while we haven’t measured, he appears to get about a 180 degree spin in. We’re thinking he’ll be a break dancer at some point in his life! He loves to climb up onto things and is truly reaching new heights. He can grab onto something and pull to his knees and I’ve even been able to take his hands and get him to “walk” on his knees. Most babies, before they can walk, will “step” when held upright. Colten, and many babies with Spina Bifida Myelomeningocele, do not do this, most likely because the muscles that are used for walking are weak, the sensory nerves in the feet may be non-receptive, etc… However, when Colten is sitting on his knees and grabs my hands out in front of him, he will rise up and “stand” on his knees with my help. As I walk backwards and he leans forward, he will pull one knee at a time forward and “walk”. I have heard that it’s likely he may learn to knee-walk and depending on his lower leg abilities, could continue knee-walking for years. And while he isn’t standing independently yet, he seems to enjoy being upright when helped! Here’s a video from last week’s physical therapy appointment. Between braces, shoes and the PT’s assistance, he can keep himself somewhat stable if holding onto something [ watch video ].
Recently we have been working on helping him figure out how to get up a small step at my parents’ house (yes, we are STILL at my parents; hoping to move the first week of December). When he goes from the foyer to the pool room (pool table, not swimming pool), there is a half-step and he easily crawls down carefully head first, pulling his legs behind him. But then he gets stuck and sits there and cries until someone comes to rescue him. When he tried to climb up, he uses his upper body and tries to pull his lower body up but ends up tightening at the hips and his legs were preventing him from getting anywhere. So we have worked to get him to pull a knee up and around. With our work, the physical therapist working on that, and the Anat Baniel practitioner working on it, and Colten of course working hard at it, HE DID IT! It was nice to see his smile when he made it up. It’s a small accomplishment but it’s another step toward independence for him and that’s what we love.
Colten enjoyed his Halloween as the Hulk, alongside Superman and Spiderman. He was not so lucky to get candy. Mean Momma and Daddy.
He continues to grow into a little toddler every day – getting into everything, making messes, wanting to eat anything in front of anyone else and nothing in front of him, playing with his brothers, and being an overall goofy kid.
Getting into trouble… this cabinet was Colten-proofed shortly after this:
This coming week will tire him (and me) out… Wednesday he has a one-year checkup with our new pediatrician in the morning and physical therapy in the afternoon, Thursday is a Myelo Clinic day with a cranial doctor appointment sandwiched in there, and Friday is his final treadmill testing day and DEXA bone density scan. This is how Colten feels about treadmill time… although he is finally pushing long enough in a standing position that my arms aren’t going to fall off from holding him up!
I’m sure we’ll have lots of tidbits to share by the end of the week. Stay tuned!
Dear Kate & Richard,
I truly am amazed at your courage, resoluteness, and most of all your love for Colten, Max, and Parker. It’s exhausting just reading and thinking about all that you do to keep Colten growing and developing with all his formidable challenges. You know that you have an ocean of prayer and care as you plow through all these medical appointments. So glad that Colten’s surgery was successful. There are some weeks when I have at least three medical appointments myself and if I were at all inclined to complain about this, I need only think of you folks and that little warrior—my situation pales next to all of yours! Love, gordon
Hi Katie…………your Uncle Gordon pretty much says it all when he writes “It’s exhausting just reading……………” But when I saw the picture of Colten crying on the treadmill, I think I too would cry if all I had on was a diaper. Didn’t you know that contents from kitchen cupboards are the “funnest” toys? Natasha used to removed all the pots and pans and then crawl inside cupboard. Kudos to all of you for your patience and love in supporting this little guy on his life’s journey. His brothers get extra special kudos for their encouragement. Blessings to all of you during this holiday season. cuzzin patricia o xoxox
Kate thanks for the update I am exhausted just thinking about your days – and then I call with an IT issue – just shoot me! For all of Colten’s challenges he is blessed with you and Richard as parents! He and you and Richard are an inspiration to all of us. Love, Maureen