My Haylee Bug, part 2

So much has happened since my first post about Haylee's condition earlier in the summer.
I was able to do some research on other facilities for Haylee's preschool/treatment and after it all, we decided we would give Fairfield West a try.  I was very disappointed it was on 10 hours per week compared to the 15-35 hours per week that I found at other facilities and also that it wasn't autism specific, but I had heard good things and the fact that it wouldn't make for frantic mornings and Carter and Olivia could ride the bus with Haylee to school everyday led us to give it a try.  My favorite thing to report about her school is that she really seems to like it.  I haven't had one tear from her about it.  She always seems happy to go.  That is a huge blessing for me.  I have fretted about sending Haylee somewhere in fear that she wouldn't be happy and I wouldn't know because of her poor communication skills.  But that hasn't been the case.  She likes going to school.
I have considered researching the YMCA's program as they have an autism specific preschool that is 35 hours per week.  I really would hate to have Haylee gone that much during the week, but I find it extremely difficult to work with her still.  Finding time is hard with a baby and everything else that needs to be done, but it's hard emotionally since she knew how to do many more than she does now.  It's hard to go back to stacking rings and matching pictures when she was learning how to write her name and could easily do a difficult puzzle by herself just last fall.  The problem with the YMCA's program (at least, the only problem that I can come up with having not visited the facility yet) is that it would be an extra $500+ per month OOP for us.  Not doable.  But I could dig and maybe come up with funding.
Coming up with references for Fairfield's program was ridiculous.  I posted on the PTC and district's FB page my situation and the need/want for references since it was summer and nobody that was in the office for the summer could help me.  I was finally able to track down a few that had been through Kim Knisley's program, and they were happy with it, but had never compared it to anything else.  Kind of disappointing.
I did visit Cincinnati Center for Autism's facility in July and came away not feeling great about that place.  I can't put my finger on it, but it didn't feel right for Haylee.

Meanwhile, Haylee had her 41 minute EEG done and Dr. Valentine called on July 25th with those results.  She described focal specific abnormalities in the language area of Haylee's brain.  She said that they could be associated with seizures and so she wanted her to not only have her MRI done, but also an ambulatory EEG (24-hour) and to meet with a neurologist.
The following Wednesday we had Haylee's MRI done and while she was under anesthesia, we had her blood drawn for all the chromosome testing (which all came back normal).  When going to give Haylee the gas to help her fall asleep, they asked what calms her and I told the doctor and nurse that singing does.  "Great" they both said and started singing "Itsy Bitsy Spider."  I know they meant well, but those two singing that song quite loudly was the WRONG thing.  The doctor was in a hurry and said I would just need to hold her and she would get it done quickly and I told her to give me just a second.  I took 15 seconds to tell Haylee exactly what was going to happen and she listened.  I then asked her if she wanted to sing, "I am a Child of God."  She did.  I started singing it and she calmly let the doctor give her the gas to fall asleep.  Sometimes mommy's know better than doctors.

Much more to come...