ECEP Evaluation 11Feb

As you may remember, we had our ECEP evaluation for Pacen this month. Here is the run down of the ECEP team --> HERE for a quick reminder.

Anyways, his appointment was today. Merik & Levi stayed home to sleep in, check the email at work (No EFMP Relocation update yet) and then they joined us later in the appointment for the last hour to hear the findings. 

The evaluation consisted of a 2 hour physical, developmental, psychological and speech examination. All of it was play based, except for when they looked in his mouth/nose/ears (he has a slight red ear drum in the left side, so we will have to keep an eye on it) felt his belly, and check out his reflexes and range of motion. They did puzzles, turning pages in books, imitations, stacking blocks, lacing beads, holding conversations, stepping up and down from a step stool, standing on one foot, hopping, jumping off of the step, running in the hallway, and finally some time on the playground.

While the therapists and psychologist were playing with him, I chatted with the pediatrician, Dr. Williams, she had already obtained all of Pacen's medical records from Holloman, El Paso (except for one), Las Cruces, and she could access all of his Albuquerque through the online patient portal at UNM. Since he has a rather extensive history, she had taken notes of things to fill the gaps from what she read. Next, I answered a lot of questions from the child psychologist. He was great with Pace. Pacen has never met a stranger. He likes everyone, I think he wins people over with his butt chin and charming smile ;). As we were nearing the end of the 2 hour portion of the evaluation, Pacen had his hearing and vision test. He passed both perfectly.

We took an hour break for lunch, and met back at 11 when Levi & MJ joined us. We sent MJ & Pace to the playground right outside the room with are awesome therapy coordinator, Jeannie. We first listened to the child psychologist evaluation. He said that he never gets to say that children going through this program in Alamogordo are advanced, intelligent or right on track in so many ways cognitively. (reasoning: Alamogordo doesn't have specialist that deal with special needs children, so no one lives here that needs intense care) It was so great to hear that our 27 mo old child was scoring at a 3 yr old + level in the way he learns, acts and obtains information.

Let us just pat ourselves on the back now for having such smart kiddos! Merik is very smart as well and I totally forgot to update the blog with his prek conferences! I had the update on Facebook: He is excelled in all areas despite missing several days a month due to us having to go to Albuquerque! Also the only child in the prek 4 yr old class to be able to bike without training wheels! He can follow multi-step directions, write his name, recognize numbers up to 30, recognizes all letters upper and lower case and will be all set for Kindy in the fall

Next we had the speech communications guy tell us how fabulous it is to come into an ECEP evaluation with a child that has a animated conversation back to him. (Most kids evaluated are autistic and don't speak, or have a learning disability from Alamogordo, not many are there for the medically complex part) He was wearing a denim jump suit, just like Grandpa Greg! Totally awesome! Pacen has over 100 words, he's putting sentences together and really doing well with language communication. I think Pace does so well speaking because he has MJ to show him the ropes. The speech guy (I can't remember his name and the folder with his name in it is way.over.there. Let's just call him, Steve.) didn't do a feeding evaluation since we are already in the feeding program in Albuquerque and he can check out Pacen's progress through the online records like the pediatrician can. Steve also noted that WOW look at how far he has come with his weight. He was a failure to thrive baby, and now he is THRIVING. Yes. Yes. Yes. Yes he is. Eating is still sometimes a struggle, but, he will get there!

The physical therapist and her intern filled us in on their physical exam of his development. As a whole, nothing jumped out at them on severe delays, no red flags for anything serious. We are just supposed to watch his left side as he tends to favor it by pulling his left hand up to his shoulder when he runs, and doens't follow through with tasks with his left side. He pushes up with his right leg and always steps first with his right leg. She said it could just be a habit he has, but it is nothing to worry about unless he loses function in his left side.

And finally, we had the medical evaluation findings. While Pacen's birth was scary, traumatic and he had a really low heart rate immediately prior to being born, she ruled out any birth injury to his brain or Cerebral Palsy of any sort, Yey! She needs to obtain a few records from his hospitalization in El Paso so she can review what testing they did at that time, but she was saying how his diagnosis list sounds metabolic to her.  She is going to consult with the metabolic specialist at UNM and see if there is anything that jumps out at him, so that she can order labs ahead of time. Dr. Williams said that if it is a metabolic disorder, and is treated correctly, his seizures would likely go away. Considering he's been on Keppra for 4 months now and we've had to keep adjusting the dosage when he hasn't gained any significant weight to throw his system haywire. She explained that if the seizures cannot be controlled with Keppra (a drug that controls them flawlessly for just about everyone) then there is probably something underlying causing it to act that way. If the metabolic blood work comes back negative, I really don't know what the next step will be, but I can ask her on Monday. She wants to look at all of his Neuro stuff again after talking with the metabolic doctor so when we chat on Monday, we can discuss what we need from the neurologist. She said that she was hoping she could give us a diagnosis to cover all of his body systems involved, but sometimes kids just have a lot of individual unrelated medical issues and that is just how it goes. While that isn't an ideal outcome, having Dr. Williams on our team is a great resource to have as she is very knowledgeable and so great to work with.

So, family on the Schuller & Blair side, PLEASE let me know if anyone blood related has any genetic or random metabolic issue, disorder, or anything of the sort so we can pin point if it is a genetic thing or not when I talk to Dr. Williams on Monday. I think that is it, I know it was a lot of info to read, so if you've made it this far, pat yourself on the back! You rock!

Love Jen, Levi, Merik & PayPay