Both of the boys have been doing amazing. Time seems to go by faster than ever now.  Zayden is 5 months old and Zackary is finishing up his last few weeks of the year at the Britain Center. 

I can't remember when the last post was, but Zackary is doing as amazing as ever.  He recently had an appointment with his neurologist and Keto team in St. Louis.  When they asked me how the seizures were, I told him we weren't really seeing any. He gave me a concerned look, and I told him that it had been months since we last saw one of his confirmed seizures.  The look got worse. I explained that we still see some "weird" stuff that may or may not be seizures, but that developmentally he has been doing awesome. He left the room, came back in a couple minutes later, and asked if we could hook him up to an EEG right after we left his office. I said of course, and listened as he told me how hard is was to believe he could be doing that much better. His last EEG was so absolutely terrible, that he could almost have been classified as being in status if it weren't for short 10-20 second breaks from the seizures. We weaned off his meds because of the side effects and his diet, plus it didn't really seem like they were doing much anyway; we did this expecting him to get worse and to have to add new meds in.  Zack did the opposite, he got better. And not just better, but absolutely amazing. After the EEG results came back, the neuro called me and told me he was utterly shocked and that the improvement on his EEG was beyond amazing.  The words normal and Zackary do not often go together, so tp hear the words "practically normal" when talking about Zack's brain is nothing short of a miracle in my opinion.  Needless to say, I am over the moon and can not say enough wonderful things about the Ketogenic Diet!!! All of the label reading, online calculating, phone calls with dieticians and pharmacies, weighing, time spent prepping, everything is all so worth every moment to see how far it has allowed my amazing little miracle to come.

Between this and a few other appointments lately, we are going to be slowly changing Zack from formula to a blenderized diet, and adding in some new supplements of fish oils and probiotics and see how he tolerates things.  We also learned that Zack is not completely hypotonic (low muscle tone) like we previously thought, but rather a mixture of severe hyptonia and mild/moderate spasticity (higher tone/muscle tightness), depending on the muscles, so we are also looking into the idea of possibly trying some botox injections to help some of this.  The thought is very strange to me, but I have heard of some good results coming from this, so we will look into it!


Lately Zack is working on putting weight on his arms in a seated position and we have even got him up on all fours a few times!  He is tolerating his stander well when I can fit it in the day, and he loves to stand next to Zayden when he is in his highchair (they are the exact same height then :) ).  He rolled all the way over and pushed up onto his arms a few days in a row recently, but seemed to quickly realize it wasn't all it was cracked up to be and hasn't done it since.  But he does love to roll over to you when you lay next to him, and he now reaches his arms out and touches your face and smiles, which absolutely melts my heart.

Zayden is doing well also, but is definitely more demanding than Zackary right now. He loves to change position, activity, scenery, etc very frequently, and has no problem yelling at you until you do it.  He loves his walker and his exersaucer, and is trying to figure out his new jumper. He is quite the piglet and is constantly hungry, so he has already had quite a variety of fruits and veggies with no problems at all.  So far he hasn't showed any preferences and seems to enjoy any food you put in front of him! As long as he is full, he is a very happy baby, which helps a lot with how much time we spend at appointments and therapy for Zackary.

Both of the boys are doing fabulous, and they are starting to interact more and more with each other. Even if it a lot of hair pulling, pinching, scratching, and eye poking right now, there are also some smiles and laughs, and my favorite is when they intently just watch each other.  They really are the sweetest things most of the time!!

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