Development

This week we had our IFSP (Individualized Family Service Plan) for Kai.  Overall, he is at a three month old level in his development--he is at a four month developmental age for social-emotional and two month developmental age for expressive language.  All other areas he is at a three month developmental age level.  I was not surprised by the results at all--it was exactly where I had thought Kai to be.  He has more alertness and self-awareness than a newborn, but not much.  With the trach/vent, he is unable to make sounds, and with his hearing loss, he is unable to hear much--which is why is is slightly lower on the expressive language end.

We set up goals for the next six months--sadly, they were all pretty much the same goals as when we started six months ago.  Still, I am hopeful for some progress.  For the last couple of weeks we have seen Kai make an effort to not only lift his head, but also to exert some form of control (the head bobbing you often see with a two-three month old).  It only lasts a few seconds at a time, but he is making the effort, which is really exciting.



Have I ever mentioned that my favorite time with Kai is bath time?  I absolutely love giving him baths for a couple reasons.  One, because he loves his baths.  He doesn't splash around or anything, but he will blow bubbles and suck on his fingers.  His favorite part is getting his hair washed.  He will look up at me with his happy eyes and blow bubbles.  Most infants/children only need a bath a few times a week, but Kai needs one every day.  He drools and sweats so much that by the end of a 24 hour period he can get quite stinky and gross.  Combine that with trach and g-tube secretions and it is just easier to give him a bath every day.  I don't mind, I love it!

After his bath I will do his trach and g-tube cares, change out his bedding, clean off his pulse/oxygen sensor, and get fresh clothes on him.  All said and done, the whole process takes an hour (that includes disconnecting and reconnecting the vent circuit from/to the humidifier and the concentrator--oxygen to the portable oxygen).  Kai loves to be clean.  He is always so much happier after a bath. 

To make bath time a little bit easier, Kai's OT got us a new bath chair for him.  He loves it.  He has grown out of his old bath chair (he is too big for the infant baths), so we are very happy to have one that fits! 


Trying out his new bath chair!  When dry it can double as a sitting chair, which is another thing we need.  He has outgrown his bouncer and swing as well! 

Earlier this evening I had just completed CPT (chest compression therapy) and range of motion exercises with Kai, and he was sitting on my lap just making the cutest raspberry noises with his fingers in his mouth.  I got to thinking about how grateful I am that we never gave up on him as so many doctors had in the beginning.  I am grateful to see him as he is today--alert and happy.  

He is starting to recognize when we are near and kick his legs out to show he is excited to see us.  He will lift his head to see us better and blow raspberries with his lips. He is getting used to his eye, although he still works to get it open.  When he is in an especially good mood, you can see the corners of his eye (where the eyelids weren't sewn closed).  He will often look toward the left with his right eye as if to compensate for not being able to see anything out of his left. 

It is remarkable to see the change in him and how much he has grown.  I am grateful for the time we have been given with him and hope for many more memories to come.