Thank You!

Our 4th annual CDH Awareness Day blood drive was a success!  We registered 29 donors and collected 30 units of blood!  Thank you to all our donors who came out to donate in honor of Sofie, Kinley, and all babies with CDH.  We are so grateful to you!  Thanks again to Rees Masilionis Turley Architecture for making this blood drive possible each year by graciously allowing us to use the first floor of 908.  We certainly couldn't do it without you!
Sofie and Kinley had a blast playing together, and they both had baby brothers there this year supporting them, too.  Each year when I see the girls running around, giggling, and playing, I'm reminded of how blessed we all are and how far we've come in the last three years.
It was great to see lots of familiar faces and some new ones, too.  We appreciate you all giving your time to make a blood donation for those who so desperately need it!
Thank you to everyone for wearing your turquoise today and supporting CDH Awareness.  As awareness spreads, more funds are becoming available for CDH research and treatment!

CDH Awareness Day 2011

I just wanted to remind everyone to wear your turquoise tomorrow in honor of Sofie and all the other brave little CDH warriors out there!!  We'll all be wearing ours proudly.  
Also, our 4th annual CDH Awareness Day blood drive is tomorrow as well.  We're looking forward to seeing everyone who comes in to donate and hopefully meeting our goal of 30 units of blood!  If you can't make it to our drive, please donate locally.
Send me a picture of yourself donating blood and/or wearing turquoise, and I'll post it here!!

4th Annual CDH Awareness Day Blood Drive

Wow, I can't believe it's been four years already!  Our 4th Annual CDH Awareness Day Blood Drive will be held on Thursday, March 31st from 9:00 am - 1:00 pm at the same location we have been at the past two years:

Rees Masilionis Turley Architecture

908 Broadway

Kansas City, MO 64106

1st Floor Lobby

Google Map It!

WHERE TO PARK

A huge thanks to RMT for hosting our drive again this year. Without you guys, we couldn't make this happen!

Last year we had 29 donors and collected 33 units of blood.  That's enough to potentially help 99 people!  Two years ago, our goal was 30 donors, and we had 41 people come to donate!! You guys are awesome!

We couldn't have done it without the help of Team Kinley, and we're excited that they'll be joining us again this year.  Both Kinley and Sofie are big sisters now, and their little brothers will be supporting them.

CDH babies like Sofie and Kinley often need lots of blood transfusions, and their lives depend on donors like you. Sofie received approximately 40-50 transfusions of blood and blood products like platelets while she was on ECMO. She wouldn't be here if it weren't for generous people who volunteered to donate blood.  

I know many of you have donated several times in honor of Sofie, and that means a lot to us. Thank you! If you've never donated, please consider it. The first time I donated blood was at our drive two years ago, and it was so easy! Each donation yields about one pint of blood, which can help up to three people in need of blood or blood products. Be somebody's hero!

You can sign up for our drive online. It's quick and easy...

1. Log on to www.savealifenow.org If you haven't registered already, you will need to register before you can sign up.
2. Select "Schedule an Appointment" on the right side of the screen.
3. Find the drive by entering sponsor code "sofia".
4. Click on our drive, which is listed as "Rees Masilionis Turley Architecture 1st Floor Lobby"
5. Click the "schedule" link to the right of the time slot you want to sign up for. You will receive a confirmation once your appointment is scheduled.

If you aren't able or don't wish to sign up online, I can sign you up. Just email me at jen@sofiascdhstory.com with the following information:

1. Your first and last name
2. Your zip code
3. Your email address or phone number
4. The time slot you prefer (1st and 2nd choices)

Here is a LINK to the sign-up schedule, so you can see which time slots are still available. If the time slot you want is already full, please email me. We can make it work!

A link to this post will remain at the top of the left column until after the blood drive for easy reference. Hope to see you on March 31st!!

Big Sister Sofie!

I recently posted a special announcement over on our family blog, OurHawksNest.  We're so happy to announce we're expecting a healthy baby in January of 2011!!  Click on the link above to read the full post.

Hearing Screen

Back in June Sofie had a hearing screen.  We really should have done them every six months after she was discharged from the NICU, but those times always seemed to fall around a reherniation surgery, cold/flu season, or both, so we put it off far longer than we should have.  Her last hearing screen was before she was discharged from the NICU at around 2 1/2 months of age.  I know, we are bad!

Part of the reason for that was that we really haven't had any concerns with her hearing all this time, and we didn't want to risk taking her into the hospital during cold/flu season just to have a hearing screen, or the priority of surgery and recovery always knocked out routine hearing screening.

Nevertheless, frequent hearing screening is very important for CDH kids, especially those that have been on ECMO and/or been exposed to ototoxic medications, and long-term mechanical ventilation.  Sofie, of course, has all of those major risk factors for hearing loss, and the incidence of progressive, late-onset sensorineural hearing loss in these kids is very high.  So even though she seems fine now, she is still at high risk to develop hearing loss throughout her childhood, and should be screened at least yearly all throughout her childhood and into her teen years.

One of the early signs of hearing loss is slow speech development during the infant/toddler years, and Sofie has always been right on track or even ahead in the speech department.  We know she can hear us quite well, but that doesn't mean that she couldn't still have some high frequency hearing loss that we just aren't able to notice.  For instance, she may not hear the "s" on a plural word or other very high frequency sounds, and we wouldn't be able to tell.  Therefore routine screening is really important for her.

We expected her to pass without any problems, but we know the statistics and were still worried that we'd put this off and she might have a problem we didn't know about.  Better late than never, I took her in for a hearing screen at Children's Mercy in June.  I was worried about how well she'd cooperate, but she did surprisingly well, and the staff were fantastic with her.  She passed with flying colors!!

For her screening this time, she was tested in a soundproof booth with speakers on each side that played sounds of varying frequencies.  She had to look toward each speaker when a sound was made, so they knew she heard it, and she did that without any problem.  She wouldn't keep the headphones on this time, so we'll work on that for her next screening.  Until she wears the headphones, they won't be able to test each ear individually, so her result this time was for her overall hearing with both ears together.

We're happy she passed, so that's one less thing to worry about right now.  We'll keep you posted on future screenings!