Thursday, June 19, 2008

98% Woo Hoo!!!!

98% last night! And 98% this morning! That's 2 weeks off of oxygen during the day! Hooray!!!!

Maryam's PT & OT got approved finally! The Regional Center was asking for a CP diagnosis to continue her services. But upon reading the report from her neonatologist, their doctor approved the authorization without the diagnosis. We were also told that if Maryam doesn't receive a diagnosis before her second birthday ALL of her services will stop. So, we'll see what happens with her therapy in the next 6 months. Hopefully she'll be all caught up by her birthday and won't need anymore therapy at all! Here's to hoping!!!!!
"Special Needs" kids parents have a funny little supportive community. We were running out of Maryam's food and her order hadn't come in yet. I called Maryam's EI teacher because she once told me that she has another patient who is on Pediasure but can't possibly drink enough of it, so they always have a surplus. They give this surplus to her. Well, when I called yesterday she said she didn't have any, but that she'd call the little girl's dad to see if they have any to spare. Turns out that they did. Their daughter was switched to a different formula so they had 6 cases of it left over. They told Dona to call me and give me their number. When I called them, these perfect strangers invited us to their house and gave us ALL of the Pediasure! How wonderful is that? Of course while we were there, we mommies talked about all the things our kids are doing and then listed off everything they're still not doing. But it was VERY nice of them to give it to us.
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3 comments:

Kez said...

that is SO great of that family to do! but it often takes someone who has been through something similar to understand the needs of others and open their hearts :)

and YAY about the O2 :) :) :)

Bake Me A Cake! said...

Congratulations to Maryam for getting off oxygen!! HORRAY!!

Parenting in the NICU and Beyond said...

Hi - you don't know me. I found your blog I think through a google alert. My daughter is really similiar to yours - born at 24 weeks and came home with a gtube and oxygen. It's been really great to see how well your daughter is doing. My daughter is almost the same age (16 months/12 adjusted). Anyway, I'm actually commenting for a totally different reason. You mentioned that your services with the regional center would end by age 2 unless your daughter had a CP diagnosis. I think you guys are in CA, right? Is she getting services through Early Start? If she is, then she should get services until age 3 (for free). My mom works for the regional center is northern california. Anyway, my son was a preemie also and only had developmental delays that were inline with his adjusted age. He received developmental therapy, speech therapy and could have gotten PT if we had wanted it (we did it through our own insurance). Just wanted to throw that out there because you should get all of the services that you are entitled too. Hope it helps. Feel free to email me (I think it's linked on here) if you have question. Congrats on no O2 for two weeks - that is awesome!