I finally received Trace's results from the video EEG done June 18-19. His neurologist's conclusion is: Abnormal due to generalized myoclonic seizures in sleep; otherwise the background activity is normal with no interictal epileptiform abnormalities, which is an improvement compared to previous EEGs. For someone whom she describes earlier in the report as a 4 year old boy with a history of mitochondrial disease and intractable epilepsy, I think this is great. It shows no disease progression. That is my fear - disease progression. The longer we see no progression the better for our little Mister. Of course I would love nothing more than Trace to be seizure free, but at this point that's not a reality. Although, I still have Hope.
Trace made it through his EEG with minimal emotional damage. He did have a very hard time while they placed all the leads. Thankfully we had a good tech and she did it as quickly as possible and good enough to where they didn't have to replace any! That's no fun, especially in the middle of the night. Trace did have lots of seizures/events during his stay. This was good because at least we were able to obtain information and not have to stay any longer. We had great nurses in the EMU, as usual. And best of all ... Thomas didn't drive me too crazy! Okay, I did send him to Target 30 minutes after we were there and to the cafeteria quite often. Believe me it saved his and my sanity :-)
3' long stocking hat, backpack, button down "old man" pj shirt
w/ non-matching bottoms & a pacifier - only Trace could rock this look!
The Wehring family has been pretty busy the last month. Peyton has had two weeks of cheer camps along with other cheer activities. My little brother Mark married the love of his life Jessica on June 23rd. It was such a beautiful wedding & a LOT of fun! I'm so excited to have her as my sister. I wish them a lifetime of good health & happiness.
Waiting "patiently" while trying on about 15 pair of latex gloves - sshhh, don't tell Dr. V
Trace had a cough for about four weeks (Jun 5-July 7), which eventually required use of his inhaler to get better. Neurology appointment June 29th - we discussed how Trace continues to make small strides with his developmental progress since the use of Onfi. Dr. V said the developmental progress is the result of less seizures. She believes Trace was having many seizures which were not visually detectable to me. I felt terrible that he was going through that and was not able to tell me. Dr. V increased his Onfi dosage again as a result (10MG AM, 10MG afternnon, 10MG evening).
We spent the Fourth of July week with Thomas' family at their lake house. It was a nice vacation and we were able to spend lots of time with our 2 yr old neice. She's quite a hoot and loved "her buddy Nate" - that would be what she called Trace. A visit to Trace's pediatrician July 16th due to some weird rash he acquired as a result of a viral infection. And that raps things up around here - hope you are enjoying your summer!
Please say a prayer tonight for all of the brave
little warriors fighting mitochondrial disease.
Hope, Love, Courage &Faith,
Laurie
