Study Provides New Leads into Genetics of Cleft Lip and/or Palate

Here is a link to this article; it may be of interest to you.

http://www.nih.gov/news/health/may2010/nidcr-03.htm

Arm Restraints: Honey Cuffs

Our very own MeriAnn has devised a new arm restraint that will be debuting this summer! They look nice and soft and oh-so-much more comfy than the hospital-issue Snuggle Wraps. Here is a link to her web site:

www.honeycuffs.com

These may be helpful for your upcoming surgeries!

Facebook Page

Thanks to Jenny for starting a Facebook page for the Kids with Clefts Utah group! Here is a link:

http://www.facebook.com/group.php?gid=333565947665&ref=search&sid=1030481088.3126577037..1&v=info#!/group.php?v=info&ref=search&gid=333565947665

Spanish Blog

I am working on a Spanish version of this blog to help more local parents. You can view it here: ninosconhendiduras.blogspot.com. If you or anyone you know would like to help with content writing/translating to Spanish, feel free to let me know.

A letter from LeAnn Roling

Hello,

I have asked Jenny to post this letter because I wanted all of you to know I will be leaving my position as the Cleft Palate/Craniofacial Coordinator as of March 12, 2010.

Giving you guys this news is harder for me than anything else. Watching your beautiful children grow and helping to answer your questions and address your concerns has been the most rewarding part of my job. I can't express how much I will miss all of you and your children. Their care and happiness has been a passion of mine for the past 8 years and moving away from this field will leave a big hole in my heart. It has been my privilege to know all of you and participate in your lives in some small way. I know I have said this to you in the past but you are all amazing people and I am a better person having spent these past eight years working with you and your families.

I will be moving on to take a position at the Veteran's Administration, but I will never forget you!

With deepest regards,

LeAnn Roling RN, MS
Cleft Palate/Craniofacial Coord
Primary Children's Medical Center

How much does surgery cost?

Of course costs will vary from child to child, but here are the break-downs from a couple of parents:

Hi! I know that costs vary wildly across the country and with length of hospital stay and severity of surgery, but here's a basic breakdown of our cost. [Our child] had a wide cleft that was repaired at 25 months (she was adopted at 23 months, that's why the surgery was later than "normal". It was her first and only repair and she had never had a prosthesis or any pre-work done. She was in the hospital for almost exactly 24 hours door-to-door.

Here are the pre-insurance costs at Utah's Primary Children's Medical Center:
Anesthesia - $1200
Plastic Surgeon - $2900
Hospital for 24 hours (OR, room, nurses, meds, oxygen, etc) - $6300
ENT (ear tubes, both sides) - $950

We had surgery on my boy's soft palate in December and are finally starting to get the billing information now. Ours was a little more money because he had ear tubes put in, a tiny lip revision and an additional day in the hospital because he refused to eat, but our total was $8127.94...

The room and board for 2 days was $4332.36
Pharmacy was $484.66
IV Therapy (for longer than normal) $97.05
Supplies, etc... 183.73
Operating Room Procedures were $2157.87
Anesthesia was $282.32
and Recovery Room $589.95 (he had to stay there awhile because they couldn't get his pain under control).

New Email

I started a new email to go in conjuction with the blog. If you have anything you think would be good to post, have experiences or information to share, or have any comments or suggestions about the blog for me personally, feel free to send them to kidswithcleftsblog@gmail.com