Today we met with the therapies. Not sure if it went how it should have. SKIP who is such a big advocate for Ava and who has gotten the approval for the Kid Kart, noticed that the meeting didn't seem to be involving the family but rather the therapists tell our service coordinator. The OT wants to go down to 2 times a week from three and the PT wants to go down to 2 soon. We were told by SKIP that 90% of kids in Erie County are getting PT and OT at least three times a week. And we were told in Genesee County that it's abnormal. Well, our therapists have also never worked with a ventilator case before. In addition, speech, Ot and her teacher want to co-treat - which means teach Ava at the same time. So Ava goes from getting 5-6 hours of therapy to 2-3 hours. In the beginning it was hard to work with Ava because she didn't sit or interact, but at this point, she can do both and can easily interact. They have not given a good reason to co-treat, but rather continue doing it despite being told of the "issue". I spoke to the service coordinator about it, and she started off that discussion by calling it an "issue", which immediately made everyone on edge. She is supposed to be what SKIP is for us with the therapists. But it seems as though she works for therapists. The whole situation brings in a toxic environment. Ava likes her therapists, but it definitely puts me and the family on edge. There is whispering and I'm sure there is much water cooler talk going on. We are not sure what to do with this situation as much as everyone that is reading this. There are constantly issues like this going on, but we really do love having Ava home. The best times are when it's just the five of us. She loves her sissies and they will do anything for her. They love interacting with her and have no jealousy of the time she gets. I do have to leave the house though, for the girls to get any sort of attention besides schooling.
Ava also is getting her IVIP next Monday since we have gotten the second round of the blood draw back. She goes Friday to get a blood draw to see if her one shot is working in her body.
The GI doctor also went up in her feed to 180ml every 4 hours and we will probably go up again next week.
Thanking God for Ava being home for over six months and praying for wisdom and knowledge...
Hi Ann..I had to post a comment especially because I work in the field as an Early Intervention teacher( for Erie and Niagara County).. EI is suppose to focus around the family and Ava needs..Your service coordinator is your advocate... Erie county has the PAPI method in which parents are the primary interventionist.. Why cant your therapist cotreat once a month or very other month? Why are they decreasing especially because when Ava turn 2 they no long correct for her prematurity. You have the right to change anyone on your team at any time...Your EI team should not cause you stress..Jodi
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