We finally got to meet with our new neuro and dietitian at St Louis Children's, and we LOVED both of them!! The neuro had reviewed ALL of Zackary's records (which was well over 1000 pages) before our appointment, and he still spent nearly 2 hours with us going over his history with us in our own words, discussing current concerns we have, and sharing with us a possible plan of treatment to continue to help Zackary develop while still maintaining a fair amount of seizure control. He decided to schedule Zackary for a 48 hour EEG at the hospital. This will allow us to see what Zack's background looks like after a year on Vigabatrin and his Ketogenic Diet (I cannot believe it has been that long; it makes me tear up to think where we were with Zack at this time last year having well over 100-200 seizures a day , and how tremendously far he has come!!) and it, hopefully, will also answer some questions about some likely seizures we have been seeing. We also got to meet with our dietitian for a bit, and she was super nice and helpful, and taught us so many things in the short time we were with her that we never knew even after a year on Keto! While Zack is in the hospital her and I will work together to make Zack some new recipes and get him lots of new options for things to work with at home and therapy, and I am so excited for him to get to try some new things!!
We have also been getting adjusted to a new schedule with the start of a new school year. Zack is now attending Shawnee Mission's Infant Development Center 3 days a week. He is there for about an hour or 2 each day, and he receives feeding/speech therapy, PT, OT, and we also attend a mom and baby class where he gets to be around other kiddos while they do music therapy, speech, and either PT or OT each week, plus group pool therapy once a month! All of this is in addition to his Early Intervention therapy he is still getting, and we have even been able to increase his pool therapy from once a month to twice, (3 times if you count group therapy!). So Zack is quite the busy little guy and is making lots of new friends!! With all of this, he is getting some sort of structured therapy 5 days a week (sometimes even twice a day!), plus what I can fit in at home on our own time. I was really nervous this would be too much for him, and honestly sometimes it is and he shuts down, but overall he is really tolerating all of it very well! We have only been on this schedule for maybe a month, and we have already seen big improvements in his development and his endurance, so I am very excited to see what these next few months will bring for him, and if all goes well hopefully we will be able to keep it up until the summer!
Overall, Zack has been doing extremely well lately! We recently got him some AFO's to help him keep his ankles and feet in the correct position, and he also just got his first stander!! This will hopefully help him get better at bearing weight on his legs and build up more strength, plus he will get to be in a new position and see things from a new perspective! We are still seeing a few periods of increased seizure activity here and there, but there are always possible explanations for it (teething, weight gain, etc) so we try to just push through it without getting overly concerned. This last week has been a little rocky, but we found out he's cutting a molar on Monday, and by Friday he was also cutting two more top teeth, so we are praying once these three teeth come in our poor cranky guy will start feeling better. Even with the increase though, his development doesn't seem to be too bothered by it, which is a huge blessing!! He is getting so much stronger and developing such a personality now! He is definitely aware of what he likes and what he doesn't, or when he has had enough of something, and has no problem telling you about it!! He is super vocal now, and always seems to have something to say, chiming in at the absolute perfect times. He is just so much fun to be around right now, and I am so proud of how hard he is working!!
His new way of doing tummy time is trying as hard as possible to get off of his tummy!
Zack can now roll from his left side to his back and then to his right and back, he only really likes going to his right side and back though :)
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