A lot has happened since my last blog. Andrew and Jacob both had their 1 year annual review things with Early Steps regarding their progress.
Jacob's was on Monday. Same goals he has been doing. I believe I blogged about this already. We are working on vision, rolling, head control, sitting and standing. He is still at approximately a 2-3 month old level.
They are 17 months old today....
Andrew had his review on Thursday. They will be working with his attention span, I was told less TV for him...yeah I know my 17 month old should not be hooked to TV, but you do what you gotta do to get by :-/.....they will work with him walking and I actually forgot at the moment what the rest of his goal are. They measured him at a 9 month old level. This is kinda depressing...reminds me just how far behind he really is. :-( Though he is getting really good at waving bye bye now. He loves playing the uh-oh game. He is clearly saying ma ma and da da to the right person. He claps on demand. He is officially cruising furniture well. Seems like the light has turned on with him and he is on a roll. :-)
Now for the neurologist...I think I like her. We showed up 20 minutes late because we could not find the right building and they still had us come right back after registering. My kids did not even have time to destroy the room before Dr. Andrews came in. She talked with us for about 30 minutes. After we were done she put down her notes and announced "He is a mess." Glad she was honest. LOL She was shocked that he had went nearly 6 months since his last neurologist visit. She was annoyed that the old neurologist had not sent over the records yet. They were calling and hounding them to fax the records the entire time we were there. She finally decided to do her own EEG on him since the results were not there after 45 minutes or so. After she left the room they had us in the EEG room within 10 minutes. They did a 20 minute EEG. By the time his head was cleaned up and we were back in the room, she was already back in to see us again. This was the 1st time in nearly 17 months that someone sat down and explained what Jacob's "seizure like" activity was. She showed me these saw tooth brain waves that were nearly constant during the entire 20 minute EEG and actually printed it out to give to me. She said that the waves is what they call a partial seizure and that all the abnormal waves were coming from the right posterior side of his brain. She then continue on in telling me that she did not even understand why he was on phenobarb if he was not having actual seizures. She told me that the dose he was on was half of what is should be for his size (which it had not been adjusted in months) and that it obviously was not working since he was still having partial seizures. This could explain his regression if he is having seizure activity non-stop. She told me for his condition that there was a medication better for him that was developed for partial seizures called Trilipdal(sp). She said that phenbarb was not a good medication for him and that is causes more developmental delay over time. She also does not agree with his klonipine. She feels that he is on to much and wants to ween him back down to a lower does or possibly get him off it all together. So over the next 5 weeks were are weening off phenbarb and onto Trilipdal. We will continue to increase the dose until the abnormal waves are better. She said this new medication has less side effects and dose not sedate him. She said the reason why he is drooling more is from the increase in klonipine as well. This never occurred to me because about the same time his dose was upped he stopped sucking normally to. I see her again in a month. Once everything is going well we will probably do another MRI and possibly start E-Stem during speech therapy to strengthen his muscles and ability to suck. I am hopeful that this is a good change and that a less medicated Jacob may equal more control of his muscles and hopefully some progress. I will never give up hope on him. :-) Just as the bible verse said over all 3 of their beds in the NICU "I can do all things through Christ who strengthens me" Philippians 4:13