8 hours ago
Make your own Countdown Clocks
Sunday, February 7, 2010
Friday, February 5, 2010
3rd Annual CDH Awareness Blood Drive
Mark your calendars! March 31st will be our 3rd annual blood drive. We are teaming up once again with Kinley's family, and are excited to be adding MJ's family to the mix this year as well!
RMT has very graciously offered us space to hold our drive again this year. Thanks guys!!! It will be held from 10am-2pm at 908 Broadway in downtown KC. More details to come on how to sign up as soon as I have them...
RMT has very graciously offered us space to hold our drive again this year. Thanks guys!!! It will be held from 10am-2pm at 908 Broadway in downtown KC. More details to come on how to sign up as soon as I have them...
Thursday, February 4, 2010
Speech Eval
Sofie had a speech evaluation with a speech-language pathologist last week through FirstSteps, our early intervention program. We didn't think her speech was delayed, but since she was eligible for the evaluation, we decided to do it just to be sure she was on track.
As many of you know, speech and hearing are closely related. Sofie is considered to be at a higher risk for late-onset progressive sensorineural hearing loss because she was on ECMO and had to take ototoxic antibiotics when she was a baby. Some studies even show that ECMO babies who also had CDH are at an even higher risk for hearing loss than babies on ECMO for other reasons.
Because of this high risk for hearing loss, post-ECMO babies should have frequent hearing screenings into childhood. Many parents have their post-ECMO kiddos screened every 6 months. We have not had concerns about her hearing so far, but should still be having her screened regularly.
She had her initial "newborn" screen done around 2 months of age, which was normal. We should have had her screened again around 6 months and 1 year of age, but 3 reherniations took precidence, and hearing screening got pushed to the back burner. I should have set up a hearing screen at the end of last summer. But after the crazy year we'd had, we were just relieved to be getting a break, and scheduling more Dr's appointments was not high on my todo list. Then cold/flu season got here, and I didn't see the necessity of bringing my well child into a Dr's office for a hearing screen during flu season when we haven't had cause for concern.
I know. Excuses, excuses. Bad Mommy. So our plan is to have her hearing screen done in early May after cold/flu season is over. We've been "studying" for the hearing screen - haha, which is actually really funny to watch. Maybe I'll catch this on video someday soon.
So back to the speech eval - since she could get a free evaluation done by a professional IN OUR HOME (seriously, how great is early intervention!?!), we just couldn't say no. The evaluation went great, and I'm glad we did it. She scored right on track at 22 months. Yay, Sofie!!
How'd we get our stubborn toddler to perform on command for someone she'd never met, you ask? How'd we get her to dazzle the evaluator with her astonishing attentiveness and her streamlined test-taking skills? Get her to display her entire vocabulary, use each letter of the alphabet she can say in a word, follow two and three-stage commands, and bunches of other things that were part of the test that I don't remember? Cake. These people are professionals, remember? They asked her mother.
Sofie played while we talked. The speech-language pathologist asked me gazillions of questions that started with "Does Sofie...?" and I answered yes or no. The test was scored and that was it. Sofie barely said two words. Much more efficient, and I dare say more accurate, than hoping she'd perform for the test the way we see her perform every day for us.
Now if only the hearing screen goes as well. If there are going to be headphones involved, I see a tantrum in our future...
As many of you know, speech and hearing are closely related. Sofie is considered to be at a higher risk for late-onset progressive sensorineural hearing loss because she was on ECMO and had to take ototoxic antibiotics when she was a baby. Some studies even show that ECMO babies who also had CDH are at an even higher risk for hearing loss than babies on ECMO for other reasons.
Because of this high risk for hearing loss, post-ECMO babies should have frequent hearing screenings into childhood. Many parents have their post-ECMO kiddos screened every 6 months. We have not had concerns about her hearing so far, but should still be having her screened regularly.
She had her initial "newborn" screen done around 2 months of age, which was normal. We should have had her screened again around 6 months and 1 year of age, but 3 reherniations took precidence, and hearing screening got pushed to the back burner. I should have set up a hearing screen at the end of last summer. But after the crazy year we'd had, we were just relieved to be getting a break, and scheduling more Dr's appointments was not high on my todo list. Then cold/flu season got here, and I didn't see the necessity of bringing my well child into a Dr's office for a hearing screen during flu season when we haven't had cause for concern.
I know. Excuses, excuses. Bad Mommy. So our plan is to have her hearing screen done in early May after cold/flu season is over. We've been "studying" for the hearing screen - haha, which is actually really funny to watch. Maybe I'll catch this on video someday soon.
So back to the speech eval - since she could get a free evaluation done by a professional IN OUR HOME (seriously, how great is early intervention!?!), we just couldn't say no. The evaluation went great, and I'm glad we did it. She scored right on track at 22 months. Yay, Sofie!!
How'd we get our stubborn toddler to perform on command for someone she'd never met, you ask? How'd we get her to dazzle the evaluator with her astonishing attentiveness and her streamlined test-taking skills? Get her to display her entire vocabulary, use each letter of the alphabet she can say in a word, follow two and three-stage commands, and bunches of other things that were part of the test that I don't remember? Cake. These people are professionals, remember? They asked her mother.
Sofie played while we talked. The speech-language pathologist asked me gazillions of questions that started with "Does Sofie...?" and I answered yes or no. The test was scored and that was it. Sofie barely said two words. Much more efficient, and I dare say more accurate, than hoping she'd perform for the test the way we see her perform every day for us.
Now if only the hearing screen goes as well. If there are going to be headphones involved, I see a tantrum in our future...
Thursday, January 28, 2010
2010 Blood Drive
Sorry for the recent blog hiatus. We've all been sick since Christmas - nothing serious, and we're just getting caught up with things around here. I've been trying to organize this year's CDH Awareness Blood Drive. Details are still very much being ironed out, but the drive is tentatively set for Wednesday, March 31st. I wanted to give everyone a heads up, in case you were planning to make a donation any time soon. You are eligible to donate whole blood every 56 days, as far as I know (correct me if I'm wrong, please!). I put a countdown clock at the top of the blog, so you can see how many days away we are from our blood drive. Of course, we'd love for you to donate at our blood drive in honor of Sofie, but a blood donation any time is always encouraged, even if it's not with us! More details to come as I have them!
Tuesday, January 12, 2010
365 Days
One year ago today, Sofie pulled out her NG tube for the very last time. We weren't quite ready for that step, so she helped us out. She knew she was ready. That or the tape was really itchy on her face that day. But either way, I'm glad she did it.
Here's a picture of Sofie on her last full day of being a tube fed baby.
Later tube!!
I didn't want to jinx it, so I didn't write anything about it until this post. And I was still afraid to say we were done with the NG forever, in this post. But now I can say, without a doubt, Sofie has been done with the NG tube for a LONG time, and it's not EVER coming back!!!!
Peetie Unplugged was a massive success. Because of this, 2009 was a much better year for us. 2008 included 3 months in the NICU, 3 major CDH repair surgeries, an oral aversion that spiraled out of control, and countless tube feedings. 2009 was about getting back to normal and having fun again.
Sofie has now spent more of her life being a normal kid, free from tubes and wires, and monitors than being that sick baby hooked up and held back. I'm excited to see what 2010 brings for her!!
I didn't want to jinx it, so I didn't write anything about it until this post. And I was still afraid to say we were done with the NG forever, in this post. But now I can say, without a doubt, Sofie has been done with the NG tube for a LONG time, and it's not EVER coming back!!!!
Peetie Unplugged was a massive success. Because of this, 2009 was a much better year for us. 2008 included 3 months in the NICU, 3 major CDH repair surgeries, an oral aversion that spiraled out of control, and countless tube feedings. 2009 was about getting back to normal and having fun again.
Sofie has now spent more of her life being a normal kid, free from tubes and wires, and monitors than being that sick baby hooked up and held back. I'm excited to see what 2010 brings for her!!
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