Kennedy Krieger Follow-Up Visit

Thursday, October 30^th our follow up visit to KKI had arrived, one whole year has gone by seemingly fast.

The morning started out early, we had arrived in good timing, which I had hoped for.

Peep the "napper"!

We arrived so early we were able to sit; Dad was able to catch a nap, I was able to feed Landon some breakfast and played some temple run and but of course snapped a few usies … #smiles.

As the hour went by, it was now time to get down with this appointment. We checked in, and had a seat while waiting to be called. We started out with Landon having a vital screening and we were prompted to await the doctor.

While we waited he took a few scrolls back and forth throughout the waiting area, peeped in the toy box, played with a few toys and eventually ended up playing shoestrings with Dad…right until the door opened and the Dr. announced “Landon Greene”.

We all got up and walked towards her, greeted and followed her. As we were following her lead she stated “He’s walking now, that’s great”. Moving along with the appointment, she started out with some follow up questions, inquired about the status of connecting with John Hopkins, which I had explained; fell through to due to non-insurance coverage. She then moved right into some instructional play with him to see what he could articulate and comprehend. They did this repeatedly using different tactics such as books, bubbles, fine finger grasping with small object items, imitation, and receptive play.

She continued to ask us questions on our thoughts with his progress and what were some goals we would like to see him accomplish.

She also inquired his recent status with schooling and as I informed her he was currently attending public school full-time, in an Autism structured-class, she stated that was a good environmental setting for him and recommended that he remain there.

As she was starting to wrap up our visit she expressed her interest in another evaluation. She stated she wanted to be clear with his current diagnosis before she added on another one. She continued with saying while current flags of autism are present she wants more time to evaluate and watch his progress considering the delays are caused from Kleefstra. She also recommended that we continue with all current settings and programs as she sees much improvement since initially evaluating him one year ago; however, developmental wise she placed his growth at age of a 1.5 year old.

So needless to say there was NO diagnosis determination made!!!

How do I (we) feel about this?  Dad and I agreed that we were comforted knowing that she wasn't a doctor who was quick to place a title on a kid. That she showed interest in learning more about Kleefstra and that she’s passionate in her field with accepting and dealing with each case as needed. She appeared to be vested in making an appropriate judgement accurately--and for that I'm grateful for her time, regardless how many times she requests we follow up.

Where do we go from here? Well only time will tell. All of Landon’s progress depends on what Landon wants to interpret and achieve. I feel as his mother I’m assuring he’s receiving all the proper services he needs, so with that, he will continue to grow stronger developmentally and physically daily. Meanwhile we will wait out next visit. And continue with regular care.

How’s Landon been adjusting to school? So far so good. Landon has always been capable to letting someone know when he doesn't want to do something. There are some days he has challenges going up and down the steps, but his teachers and other staff has been helpful with assisting him when needed. His PT Therapist recently recommended and requested he receives an full- armed supported seated chair to assist with him sitting in the chair correctly, as he slouches when sitting on the benches during lunch time. And I’m currently waiting on feedback for his Assistive Technology communication device. His teacher and I recently meet and she recommended that I get rid of his sippy cup, pamper usage and use pull-ups only, and start incorporating a picture communication system at home. She said overall, he has adapted quickly and faster than she expected.

"Progress lies not in enhancing what is, but in advancing toward what will be" 

Khalil Gibran