Avery Grace

Avery Grace

Monday, March 2, 2009

When it rains

It's a good thing that I have always enjoyed being a girl on the go. I think my kids are getting used to this lifestyle as well... since they have never really known any different. Everyday is filled with various appointments, and no two weeks are the same. Last week after a 3 hour visit to the ENT, we learned that Kaylin needed ear tubes, which we got two days later, Avery needs her tubes replaced, and her tonsils and adenoids removed, and I need a procedure on my ear to reduce pressure and hopefully bring back some hearing. sigh. Kaylee came through her surgery like a champ. Barely cried at all and we were back on the go that afternoon as we toted Avery to therapy. Avery's surgery will have to wait for reinforcements. Grammy will come help us out as putting a kiddo with Mastocytosis AND Autism under anesthesia has it's risks. They will have to pre-treat her with various steroids and antihistamines to ensure she doesn't go into anaphylactic shock. Scary. I have been putting off this surgery for her for over a year, and after talking with some of her therapists, I think it is time... and hopefully, when she can organize her respiration and swallowing patterns, we will start to see some improvement in her speech. I'm not holding my breath, but it makes sense that it could help.

Another thing weighing on my mind quite a bit this past week has had to do with Avery's treatment after she turns 3 years old. No longer sheltered in the birth to three bubble, we will now be entering the new world of "public school special education." On the DAY she turns three, she can start "school" and there she will get speech, OT, PT etc. I am pretty sure they will recommend full days after her evaluation in a couple of weeks, and I am also pretty sure I don't want to send her for the full day, everyday program yet. I know she needs intensive therapy, but she is IN intensive therapy that I have designed for her at outside clinics, home programs and so on. We'll see though. Bryan and I have to talk with several specialists, her current therapists, and tour the school before we come to any firm decision. But the idea of my non-verbal three year old (who I adore) being away from me all day everyday is a little more heartbreaking than you can imagine.

The old saying is true, "when it rains, it pours." But I am so ready for the rain to lighten up a bit! We have been in this storm for some time now, and we are all ready for some sunlight to peak through and give us a break. That being said, however, I will state that my life is absolutely fantastic, just as it is. Even with all of the struggles and heartaches, I wouldn't trade the joy we get from our girls for any of it. So, onward we march... umbrella in hand... smiles on our faces.

1 comment:

Meri said...

Let me know if I can help answer any PPCD type questions. I know it is different in other districts, but would love to talk about it if you would like to. Do you want to get together for a playdate the week of March 16-20? I would love to see y'all! Let me know if you have a time that works and I can ask some other friends to join us.