Connor climbed up the stairs this morning! I almost had a heart attack. It came out of nowhere as we only just introduced it in PT last week. We hadn’t even really worked on it yet. Sure, he goes over to the stairs and props himself up with his arms on the step. He’d even managed to go up one with assistance. But today I was on my computer and I glanced over to the stairs and there he was on the second step. I gasped and ran to the bottom in case he fell, but he just kept going. I did a whisper yell to get Chris out of his office, but not wanting to startle Connor or stop him. He would have gone all the way to the top but Chris stopped him since we are painting (ahem, correction, he is painting) the bedroom and there is stuff all over.
Just this week we had his IFSP meeting with his early intervention team to check his progress and set new goals. His physical therapy goal he was to have met by now, set based on the speed with which he met previous goals, was to be sitting independently with hands free for play. Instead he surpassed that and started crawling, pulling to stand and cruising. And now climbing the stairs!
Here is video of a repeat performance.
I’m wigging out like I just did 27 espresso shots.
Mixed Up Mommy 
Once he starts developing he will just keep goimg as any normal kid will! Brace yourself , 🙂 and once speech starts it will come too ,altho more slowly in some cases. Speech and physical development were stacias strengths , her fine motor skills …. scissors, writing never came ,in her case and her speech had echilolalia for a time but considering her very low iq it was miraculous and she memorized entire sonfs and dialogues from moviea . She walked , ran , climbed and danced as she grew older.this from a kid who i was was never going to walk , talk or live to adulthood! She was nowhere near wh ere connor is tho in his curiosity and manipulation of toys . She ignored most toys and real play for at least three years . Connor will do great and do so much more than you can imagine! happy for you! Hes a doll
Cheers, Susan Givng thanks in November for blessings in my life!
Hi, just wondering how old Connor is? We have a 1 year old, Cooper, with. TSC and epilepsy and wanted to gauge the milestones Connor is resching. We are working with PT and OT to help him sit up. Working on crawling but we are just in the beginning stages. Thanks for all the stories and information it is helpfull to read and follow!
Thanks for reading! Connor will turn 20 months on Nov. 21. His first 14 months were uber slow development. It took him several months to master sitting, from roughly about 6 months until fairly close to his first birthday in March 2013. He had also taken months to master keeping his head up. But right at the beginning of June this year, he took off.He started getting into sitting position independently, he crawled in August, and has since started pulling to stand, cruising, and now climbing stairs! This has been at shocking speed compared to his first year of development! Best wishes to your family and Cooper. Please let me know from time to time how he is doing.
Will do. Looking forward to reaching more milestones. Kind of in limbo right now as we started the ketogenic diet 2 months ago. Things have gone pretty well, docs will assess his progress and decide to keep him on it within the next month. Fingers crossed for sitting up and crawling; huge milestone so happy Connor is exceeding them! Hope Cooper will have the same success!
We’ve discussed keto or modified atkins with our neuro. Upping his Onfi has not stopped the seizures thus far so we may have to revisit that. Please let me know how it goes!
We are from Wisconsin and took Cooper to The Children’s Hospital in Cincinnati, OH. That place is the epicenter of TSC research and care! Their main advice was to stay as aggressive as possible using Vigabatrin for seizure control and Affinitor to shrink tumors especially a large SEGA. He has been on many anti-seizure medications and the Vigabatrin seems to have helped the most. The other main suggestion was to start the Ketogenic diet!! We took this information back to our doctors and they agreed and had planned on starting him on Keto. It has been about 3 months now. They are going to keep him on it most likely for another 2-3 years. We have seen progress in his responsiveness to us and the ability to track and interact.
Hopefully things will continue to improve for him as his doctors say he has the worst case of TSC they have, mainly do to the large SEGA tumor in his brain and the hypsorythmia!
Anyway, since the start of the Keto diet we have had no clinical seizures and have been able to ween him off of his Phenobarbatol and Valporic Acid which are anti-seizure meds! Good luck!
Thanks.