Still no sleep but the kids are alright

Can’t believe we have an 8 year old! Holy cow! Where did time go? Lizzie turned 8 and wanted to spend her birthday with her cousins in Victoria.

Lizzie is doing great. Loving the third grade. She will start a program soon called Girls on The Run. Both her and Cooper are still taking swim lessons. 

August has been a bit of a whirlwind for us. After a few days on the medication the neurologist put Cooper on, we noticed a complete difference in his behavior. He did start sleeping better but that slowly stopped as well and he was visiting us at 3 am.

Cooper had his 4 year check-up. His doctor questioned why he was on the medication and we told her what we knew: they saw spikes on his EEG, his EEG was abnormal and it was to prevent seizures…that he wasn’t having. We all agreed he didn’t need to be on this medication. (He was also one of several children she had seen with the same folder from the same neurology facility with the same diagnosis)

I called the neurologist to ask about another medication and to see why he was on this one. I also mentioned after talking to his pediatrician, we have concerns. The neurologist tried to explain but as soon as I mentioned his pediatrician, the neurologist got very defensive and said that she went to school for neurology and a lot longer than she did. That upset me -  she didn’t seem to have my kid’s best interest and more of a contest of who knows more.

After talking to his therapists and hearing from the elementary schools psychologist apparently he is one of MANY kids that was told have EEG, MRI, medication, genetic testing and hours and hours of ABA therapy. This did not sit well with me. 

We decided to start weaning him off the medication. We still have an MRI scheduled and not sure if we should cancel it or not. He will NOT being doing any ABA therapy. We also contacted another neurologist for a second opinion. 

Cooper also started PPCD (Preschool Programs for Children with Disabilities) at a nearby elementary school. (The school that Lizzie goes to doesn’t have the program and they feed into the near by school.) He goes from 11:55 to 2:55 to big school and loves ever minute of it. He has the best teachers and we are so glad he is in the program. We are started to see differences in his behavior already.

He will be also starting his MDO Preschool (3 year old class) next week on T, TH, F from 9:00 to 11:40. We feel that this is the best for him. He also is still doing private therapy on Mondays.

So as of now Cooper loves school, is back to not sleeping through the night (even with the help of melatonin) and is thriving. We still don’t know what to do about the MRI. Sometimes we still don’t know what to do when it comes to Cooper. And the guilt of having to put Lizzie second at times is always there. But we do our best and make sure they know we love them more than anything.