Before kyle even came home from the NICU I felt like doctors would be our main resource in helping kyle develop and grow - reach his full potential physically and cognitively. So the day we received Kyle’s MRI results I began looking for the best neurologist I could find. I didn’t care if we had to fly to china once a month – I was ready. Long story short… Kyle has now been to 3 neurologists – one of which is known to be one of the leading pediatric neurologists specializing in PVL. He was brilliant - so knowledgeable in his field. I really could go on for days about all I learned about Kyle and his brain development, his specific injuries and on and on…. His information was far more in depth and relative to Kyle’s development than I had heard before. His thoughts on kyle:
He sees NO signs of cerebral palsy!
Kyle is on track developmentally for a 6 month old (his corrected age to the day of our appointment)!
He was shocked and impressed that Kyle could sit up!
He was thrilled by his social skills!
He was shocked and impressed by his eating and NO Meds!
His concerns were in the area of coordination and some involuntary movements of his hands and feet. He felt like this is something called Chorea. This has just recently been discovered in preemies – mostly preemies with at least a grade one or two bleed. If you have ever been here when a neurologist or “the big doctor” on your son’s case says they have a concern – it is like your whole world stops spinning, all the good comments leave your mind, your faces gets hot and your hands cold… - and then he tells me that they think it can be controlled with meds, they think the children may can outgrow it and he would not medicate Kyle for it right now –
He said statistically Kyle is at super high risk for fine motor problems and also learning disabilities. Then he said that he is only saying that b/c statistics show this but he is looking at kyle and he looks like a “normally developing” 6 month old and he has blown all the statistics so far!
I was ecstatic to hear that! He did encourage us to keep working at all the therapies we could get our hands on. He agreed they make all the difference!
Our last physical therapy was a couple of days before that appt. Sarah was also thrilled at how kyle was doing. He really is getting big! He is accomplishing all that she puts in front of him! Her concerns are more in the areas of planning and organizing. Meaning wanting to play with a toy and organizing himself to figure it out. This also plays into fine motor skills. So we are working hard in this area.
We started speech therapy this week – that went well – she does not feel like kyle has serious oral aversions or even texture problems. She feels like kyle’s gagging and vomiting may be related to organization as well. Some foods do not give him time to organize “a swallow”. This is instantaneous for most people – but for kyle it maybe due to brain immaturity or injury. We are seeing this in other areas (physical and cognitive) for kyle, even in some areas that we have conquered so this leads me to believe that it may be immaturity. Either way we expect this to improve as we teach through therapy and with maturity!
We also had Kyle’s Dietitian appointment today. More good news from her. She loves how kyle is looking and she would even like to take him off preemie formula! What a big boy. He is in the 20th percentile for height and weight FOR HIS REGULAR AGE! Not even corrected! She also had some great ideas to help kyle’s desire to eat and ability to move forward in eating! I am excited to begin her thoughts and see how he responds!
Kyle at the end of summer:
can roll over, sit up, grab objects (and his food and spoon), bring them to his mouth,
bring his hands together to grab a toy, chew on his feet, has 2 teeth, is growing lots of hair, he smiles, laughs, squeals, sings, talks to people ( LOVES PEOPLE!), grabs his bottle to hold it, responds to the signs – all finished, up (to be picked up), more. LOVES his big brother jadon, is not sure what to think of big brother jack, loves his mommy, smiles any time he sees his dad – and I mean any time! He sleeps 12 hours a night, takes 2 two hour naps, eats breakfast lunch dinner and bedtime bottle. Too busy for a bottle doesn’t like it unless he is sleepy, loves baby food and to teeth on fresh fruit and veggies, LOVES MUSIC – we turn on the radio and dance and he LAUGHES!
Kyle is working on:
Drinking from a straw and cup, eating food with his hands, weight bearing on his knees, picking up objects, standing, rolling to the right, sign language, learning to recognize his name, moving his eating base to his real age.
Kyle – you are a joy. A daily, miraculous joy. You are such a hard worker and have the sweetest disposition. I am so proud of you and all you are teaching our family. You have changed me for the better – you have added such value, joy, fun and love to our family. I love you.
