A lot has changed

              Our last post was from the hospital during Josiah’s ICP monitoring surgery. Hard to believe that was 6 months ago. Josiah’s hair has grown back nicely, unfortunately though, the surgery didn’t correct his massive cowlick!!!!  We have since received a recommendation from our Neurosurgeon to wait and not proceed with   a shunt.  During the ICP Monitoring, roughly 67% of the time, Josiah had abnormal pressure on his brain. However, he didn’t display any physical symptoms, such as excessive fatigue, vomiting, etc.  that usually comes with high pressure like that. Had the recommendation been that we shunt him, it is a quick enough surgery, but the effects of it last a lifetime. Once they place a shunt in the brain to control the pressure, your brain then becomes shunt dependent, and when it fails (at some point, a very high amount of shunts do fail), you need a replacement, which means another brain surgery.  Also, the symptoms/side effects of a failed shunt aren’t exactly comfortable, and can be life threatening. So on that note, for now Josiah remains shunt free! Thank you LORD!!!

We had also been referred to another Children’s Hospital about 3 hours away where they have a more specialized epilepsy surgery unit. We had our first appointment in February. The appointment went ok, and the Doctor has decided to try increasing the frequency of Josiah’s medication to 3 times daily. If that doesn’t produce a change, we will try Lamotragine, and if no success there, move on to the Ketogeic diet.

Now, we have been referred again to another Children’s hospital, this one about 4 1/2 hours away. They are among the TOP 3 hospitals in all of North America for their Epilepsy Surgery program. Apparently it will take quite a while for them to see us; there is a long wait list. But, we have a plan in place with things to continue to try over the next year while we wait for an appointment. Luckily, we can follow this plan at our local Children’s Hospital.   We see Josiah’s neurologist again in May to discuss how the Clonazepam increase went, and its success, and from there will most likely introduce the Loamotragine.

               We completed the last increase of Clonazepam last week, and have noticed a HUGE change in Josiah’s seizures. It is such a ray of hope! This is the first time since he started with the Atonic seizures that we have actually felt like we may be getting somewhere with medication! It hasn’t stopped his seizures completely, he still averages about 20-30 a day, but that is a big drop from the 120 he was having daily before!!! Another thing that we believe to be a contributing factor to his drop in seizures is the fact that I now stay at home with Josiah full time. I had my last day of work on the 3^rd of February. I have wanted to stay at home with Josiah since we had him, and we are able to make it work, so, that’s very exciting.  The same week we started at home full time, the seizures started to decrease. He loved daycare, loved his personal worker, etc. But it was also a high stress area. He’s very sensitive to noise, doesn’t like kids crying, etc, and that stressed him out. Also he was sick often, because there’s always someone sick at large daycares (I find anyways). Stress and sickness are two things we know make his seizure frequency worse, so, it’s much better now.

                   In the meantime, we continue to plug away. Josiah gets his socialization with his cousins now. He loves to watch them play. There are 5 of them, ranging from 10 down to 4 months, and he enjoys them thoroughly.

I think we mentioned in our last post that Josiah started walking 2 days before the surgery in October. He is trotting all over the place. SOO cute! So we are really looking forward to the beach this summer, since I think he will enjoy the sand between his toes.

That’s all for now. God Bless!!!!