Monday, January 10, 2011

I'm back!

It has been a very long time since I last posted-almost 1yr. So much has happened, so much has changed. Ethan is now 14 months old and running around like a crazy child-that's right I said running! He is so smart that it truly amazes me. He will say things and do things that you wouldn't expect a child his age to do, but that's what makes me so proud to be his momma.

As for all of his medical info, since I last posted we have been to Spina Bifida clinic twice. Had 3 MRI's and 2 CT scans. Amongst those scans they found he does have Arnold Chiari Malformation, they discovered a cyst in his spinal column (the same area they did the myelomeningocele repair) they also saw that he not only has the one cyst in his brain but a lk tctually two. For now we are just watching and waiting. There really isn't much you can do for it except drain them and due to their location Dr. Heneger doesn't want to unless completely necessary. We also discovered Ethan has kidney reflux disease grade 1. For now we are not doing anything for that either, just watching and waiting. At our last clinic (this past Fri) Dr. Levy said once we begin getting UTI's we will begin med's and possibly catheing. At Ethan's 1st clinic (July 2010) I was FINALLY listened to, he would not eat anything. Formula was all i could get in him no matter what we tried. I told the Dr's, I told the other therapists, and I told our Early Intervention coordinator and everyone kept saying give him a little longer. Well there we were at clinic and I was asked how much purees he was eating a day? My answer was simply none. They were all shocked and going crazy. Within a matter of days we had a modified barium study to insure it wasn't because he couldn't eat and then we began Speech therapy for feeding. On our first day of speech Melinda, the therapist, noticed sensory issues and recommended Occupational Therapy. We had Carla come evaluate and sure enough Mr. Ethan has sensory dysfunction intergration (or something of the sort..the whole thing still 1/2 way confuses me!) Fast forward to now, Ethan is eating wonderfully-in fact we can't get him to stop! He is going to be released from Speech therapy hopefully this week, definatly this month! His sensory issues have come a very long way and as of last week he will only be getting OT once a month! We will be going again in July to SB Clinic, for another MRI, and CT scan and for our follow up with the neurosurgeon!

For those that don't know I have been back to work full time at Community Blood Center since March '10. I am no longer a phlebotomist, though I miss it I love my new job as Operations Support. I stay busy ALL THE TIME and it's always something new! Greg is still at TPI for now, hopefully a better opportunity will come along soon.

I promise I am going to actually keep up with my blog this time around, I want to have this to look back at later in life. It's the littlest things that 6 months from now can make you smile!So if you see me slacking, fuss at me! :)

1 comment:

  1. Thanks for the update!! I love hearing how everyone's kids are doing. :)