Yearly Follow-Ups: 4 Years Old

It's that time of year again!  We just had two appointments this year, since we are no longer seeing surgery clinic.  We were cleared last year!

Sofie had her spinal xray first, followed by her ortho checkup.  Dr. S.  said her curve is now at 11%, down from 14% last year, so now within normal range. Unless she has problems or we have new concerns, she is now cleared from ortho!  We will, of course, deal with ortho and surgery clinic again in her early teen years when we deal with pectus correction.

After the good news from ortho, we went over to audiology for her yearly hearing screen, which she passed beautifully.  So now we only have one follow-up each year with audiology.  Fantastic!

5th Annual CDH Blood Drive Success!

We had 24 donors register and collected 22 units of blood!  Thank you to all of our donors!!!  This year we had four participating CDH families, which was really great.  We had the Melcher family with us again, with their survivor, Kinley, the Baker family, with their survivor, Flynn, and the Linenberger family, with their survivor, Noah.  It was so awesome to see all of our tough little fighters together!

Back: Noah, Tera, Bonnie, Flynn, Liam, Jen

Front: Kathy, Kinley, Sofie.

5th Annual CDH Awareness Blood Drive

**Know the drill already?  SIGN UP RIGHT HERE!**

Our 5th Annual CDH Awareness Blood Drive will be held on Tuesday, April 3rd, from 9:00 am - 1:30 pm, at the same location we have been at for the past three 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 Architecture for sponsoring our drive again this year, and letting us use your awesome space. Without you guys, we couldn't make this happen!

Last year we had 29 donors and collected 30 units of blood.  That's enough to potentially help 90 people!  This year we have set our goal at 30 donors again.  Please sign up to donate and help us meet our goal, while also giving the gift of life to someone who needs it.

We're thrilled that Sofie's CDH pal, Kinley, and her family will be joining us again as cohosts. And we're so excited that this year two new families, The Bakers and The Linenbergers, will be joining the team as cohosts, as well.  Their boys, Flynn and Noah, are also CDH survivors.  Flynn was born with right-sided CDH in November of 2010, and is doing amazingly well.  I met his mom, Bonnie, when Flynn's older sister, Sparrow, was in Sofie's preschool class last year.  Tera's son, Noah, is two years old and they live here in the KC metro area.  I'm so excited we will have four families hosting this event together this year!

CDH babies like Sofie, Kinley, Flynn, and Noah often need lots of blood transfusions, and their lives depend on donors like you. Sofie and Kinley each received approximately 40-50 transfusions of blood and blood products like platelets while they were on ECMO.  And CDH babies who do not require ECMO often still need multiple blood transfusions.  They wouldn't be here if it weren't for generous people like you 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 three 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. CLICK HERE to sign up.  If you haven't registered already, you will need to register before you can sign up.
2. Click on our drive, which is listed as "Rees Masilionis Turley Architecture 1st Floor Lobby"
3. 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 to or prefer not 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 email address or phone number (if you want a confirmation of your appointment and a reminder.)
3. The time slot you prefer (1st and 2nd choices)

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 April 3rd!!  Please "LIKE" this post on Facebook below to spread the word!

Yearly Follow-Ups: 3 Years Old

Sofie had yearly follow-ups at Children's Mercy today.  She saw Dr. S.P. at surgery clinic and was cleared from their care unless we have problems or concerns.  Her risk of recurrence at this point is fairly low.  Our main concern is her risk of small bowel obstruction, due to all the scar tissue inside her abdomen as a result of having 4 major diaphragm repair surgeries.  This will be a lifelong risk, something we'll monitor closely.

She also had her yearly hearing screen with speech pathology and audiology, which she passed with flying colors.  She did really well at following the instructions of the audiologist, and performed perfectly.  No concerns there, just plan to continue yearly screens all throughout childhood, as CDH kiddos, particularly those who were on ECMO, are at a high risk of late onset sensorineural progressive hearing loss.

We had one new appointment with ortho this year.  Many CDH kiddos also have scoliosis, some quite severe, requiring surgery.  So I requested a baseline spinal film and assessment by ortho in case she has issues in the future.  As you can see below, she cooperated quite well for this.  ;-)  She does, in fact, have very mild scoliosis right now, a 14% curve.  Any curve less than 12% is considered normal, so for now it's just something to watch, and we will follow up again in one year.  Dr. S., her ortho doc, is just phenomenal.  He also treats my best friend's son, who has a very complex condition, and has just provided outstanding care for him.  He definitely lived up to the hype.  I was very impressed!  We're so lucky to have the fantastic physicians we have taking care of Sofie!

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!