Little brother is here!!

Meet Zayden, our little old man!!!!

Zackary is proud to share that he is now a big brother!! Little brother Zayden Charles was born on January 29 at 7:56 am.  He was a half pound bigger than Zack, weighing 6 lbs 9 oz, and was a quarter inch shorter at 20 ½ inches long.  We are so happy to say that he is doing great! He has a great set of lungs and a very large appetite!! :)  Zackary never really had much of an appetite until over a year old, and only occasionally cried when he was a newborn, and so far we are getting to see a different perspective this time around.  At his 2 week checkup, Zayden weighed in at 6 lbs 12 oz, up 10 oz from the week before, and showed great muscle tone and reflexes, all of which are very promising signs of health for him!! Even though things look hopeful, we are going to have him tested to see if he carries the same mutated STXBP1 gene that has caused all of Zack’s challenges.  That will be a very long 4-6 week wait for results.  Of course we are hoping that everything will be ok, but it will be nice to know either way!!

Our sweet Zackary is proving to be quite the amazing little guy also!  He is completely free of seizure meds now, for the first time since he was 5 weeks old when his seizures started!!  We are noticing the seizures are a tiny bit stronger, but still nothing compared to where he was in the past, even just a few months ago!  He has been very irritable lately and not sleeping well, which could be attributed to withdrawals, him picking up a little bug of some kind, or even sensing the new baby he now has to compete with :).  The irritability and lack of sleep could easily be the cause of the extra seizures, or could be caused by seizures, there is really no way to really know.  It is always such a guessing game with him! We just increased his Ketogenic ratio from 3.75 to 4:1, but other than that our plan is to give it a bit longer and see if things get better before making any further changes.

We have taken the last few weeks off of therapy so that we could get ready for and settled in with Zayden, but will be working to get things back to our routine next week hopefully. While we have enjoyed the break from everything, it will be nice to get back to our normal and see how Zack responds to all of his therapies without the fog of the meds!  If we can keep it up, Zackary will still be getting therapy Monday through Friday.  He has been going 3 days a week to the Infant Development Center in Shawnee Mission, where he does feeding therapy, PT/OT, and group therapy with his friends (where we get to do music and pool therapy, in addition to some PT/OT/ST).  His IDC therapists have decided to add in some  individual time with the speech therapist and see how Zack responds, and then we will decide if he would benefit from adding another session to focus purely on that.  We also utilize First Steps, and we have PT and a vision therapist that come to our house each week, and OT and pool therapy every other week (when we can get our schedules coordinated). 

We also just had Zack's IFSP meeting for First Steps.  We discussed having a speech consult through them to determine if Zack would benefit from ST.  That is one of our first steps to deciding some new equipment ideas such as switches and other adaptive pieces would be beneficial for Zack to help him interact and better communicate with others. Though he has become a very social little guy, loving to look at people and chat with us (and we couldn’t be happier about that), he depends on others for any and all interactions.  So one of our biggest goals right now, other than trying to increase muscle tone and mobility as much as possible, is to teach Zackary to start being able to interact with toys and other aspects of his environment on his own.  This would allow him to control some things and give him some sort of independence in his life.  This is something we haven’t really tried much before, so will be interesting to see if and how it will pan out!!



 

Big brother hanging out with little brother
 

My sweet boys <3

2 weeks old