Hello everyone! :) Ill try to update you all on Maddys last few adventures... The beginning of January Maddy had a 48 hour EEG to check for seizures. By the grace of God, we found out that she is currently NOT having seizure activity! This is huge for Maddy! We originally scheduled the EEG because we were noticing some new triggers that we were concerned about. The fact that she isnt having seizures is a HUGE blessing. About 96% of PMG kiddos develop them, so we do know its a matter of when not if shell get them...so we are taking things one day at a time. The EEG did pick up abnormal activity but that is not the same as a seizure...so basically her brain is not working as a typical brain would...but we already knew this. Now on to the Seattle trip...It was so very informative and I am so grateful we got to go. Dr. Dobyns was very helpful with giving us useful information regarding Maddy now and in the future. He was realistic but in no way harsh or rude. I asked questions and he answered them the best to his knowledge...I came into the appointment with a page long list of questions. I asked the good, the bad, and the ugly. He answered them all and spent three hours with us. We did not fly half way across the country for him fix my daughter or tell us things I believe only the good Lord above knows...We we went there for one thing...a clearer understanding of this horrible disorder that has taken over our lives...and I feel we got that. A few things we were told... -Maddy does have PMG...we were told several times that there might be signs of lissencephaly. Dr. Dobyns saw no signs of this. -Maddys brain is 100% effected by PMG. -Maddys high tone mixed with her low tone is a good thing (if you can call it that)...it means her chances of walking (most likely assisted) are slightly higher. He never predicted whether shell walk or not. He just told us that its not out of the question, and if she does itll be in the very far future...but realistically we are preparing ourselves for the possibility that itll never happen. -He doesnt think that Maddy will talk. I was prepared to hear this. Dr. Dobyns and I discussed ways to communicate with Maddy in the future. He informed us that he has seen great success with kiddos using IPads, so I will be looking into that later. -Dr. Dobyns is pretty confident by looking at her MRI that CMV caused Maddys PMG. We are ordering a blood test for her and I both to see what that detects...We have had every genetic testing done and they have all came back negative. He had no more to recommend. We did sign up for his on going research... -He did say Maddy needs to be doing active feeding therapy, so we are going to be pursuing that heavy after her swallow study next week. Im very excited about this! -The fact that Maddy isnt having seizures yet is HUGE! He said of course shell more than likely get them, but every day she doesnt is a great thing...he told us that the longer her body goes without having them, the easier they will be to treat. -Dr. Dobyns seemed pretty concerned about her weight/size. He said he would like to see it go up. We discussed ways to help her grow and what we needed to do when we got home. These are just some of the things we talked about...There was a lot more info given. Like I said, it wasnt a negative experience. I am so glad we went and plan to follow up in a few years. Thank you all for your support and love!!! Oh and despite a slight cold and congestion, Maddy loved Seattle and was a very good girl on the plane and sight seeing! :) All the flight attendants were definitely falling for that Maddy charm! :)
Posted on: Fri, 31 Jan 2014 05:19:52 +0000
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