Tuesday, February 16, 2016

CCA Spotlight: Alisa & Lynna, CCA Fundraisers

This month's e-newsletter feature is the dynamic fundraising duo, Alisa Shelton and Lynna McGuyer who produce one of CCA's largest fundraisers each year - "All the Way for CCA" Golf Tournament. We are so grateful to them for the countless hours they put in, because without dedicated fundraisers from within our community CCA could not serve nearly the number of families we do. Read on to learn a little bit more about these two and their mission to make the world a kinder place.

Tell us about yourselves... who are you, where are you from, and how'd you learn about CCA?
Alisa: I'm Alisa Shelton from Pasadena, TX. I met Becky through Lynna, who wanted me to meet Becky and Wade... actually just to donate to Becky's fundraiser, but when I met her and realized what an awesome person that she was, she inspired me to want to do more.

Lynna: I am Lynna McGuyer. I found CCA through Becky White, who I met as a student at Lee College when she was doing a fundraiser. I admired her because she was a full-time mother of a special needs child. I watched her do well in school and work on this fundraiser, so I knew that I probably could put her in contact with someone who could help raise more funds in a much faster manner, and I introduced her to Alisa Shelton.

What do you like best about event planning and, in particular, All the Way for CCA?
Alisa: Knowing that I am helping these children, it fulfills my heart.

Lynna: Watching the CCA families work together and seeing the results!

What is the hardest part of hosting All the Way for CCA?
Alisa: Getting our golf participants to respond and commit in a timely manner.
Lynna: Trying to find the time that it takes!

How long do you work on planning the event?
Alisa: All year!
Lynna: Since I have a full time job,  I am only able to dedicate a few hours and help Alisa when she needs me to. 

What would you tell someone who is thinking of starting their own golf outing or other family fundraiser?
Alisa: You need time, contacts, patience, and a passion for your cause!
Lynna: You need time, contacts, patience, & a passion for your cause and you need money!

How do you convince people to donate or volunteer and get involved?
Alisa: At the beginning, my network and my relationship with them is why they listened, but now it is because they want to help the kids. One of our players made the statement this year, "We play in a lot of tournaments, and spend a lot of money, but this one tugs at our heartstrings." We know we have a good thing going here!

Lynna: By showing them pictures of the kids explaining to them with the families go through. Then, showing them what we have done already and how we want to do more.

Did you have professional experience fundraising or planning events before you started All the Way?
Both: No!

What is your favorite way to relax?
Both: We don't! There is no relaxing while doing a fundraiser...haha! But we like massages and to workout.

What is your motto?
Our mission statement through our nonprofit organization, EMW, is "Helping people who want to help themselves." Becky has been the inspiration behind our creating this event.

Why do you want to make the world a kinder place?
Alisa: I have been blessed in my life and I am grateful that I am able to share that with others.
Lynna: I believe that everyone has a kindness in them, it just takes someone to bring it out and recognize it ... somehow I am blessed with that vision.

What do you hope for the future of CCA?
Alisa & Lynna:  That they get more national recognition, allowing a better future for these children and their families.

Who inspires you?
Alisa: First of all, it is Becky White! Now that I  know Becky personally, I have learned where she came from, and I have watched her, through hard work and perseverance, show others that if you persevere,  you can change your life, reach your goals, and make a difference. Becky never gives up! She stays in contact with me weekly to let me know what is going on in her life, causing me to realize her appreciation for my work with CCA. I admire what she is doing, because she tries to make a difference in the world,  her family, and her personal life.
Additionally, since going to the retreat in California, I have come to be inspired by all of the moving parts it takes to make CCA successful: the doctors, the parents, the siblings, the tireless effort that is put in by the administration... in reality our tournament is just a small part of the big picture!

Lynna: Becky White and her family, I watch the efforts of Wade, Becky, and their children to create a normal life for their family, and knowing where they both come from, has allowed me, even more, to appreciate their success. Additionally, Alisa inspires me! She is so consistent in helping people, her dedication and where-with-all to help others is tireless!

CCA: Both of you inspire us!

We also want to extend our sincere gratitude to all the "Texas Moms" who are also instrumental in the All the Way efforts. Thank you Lisa Bock, Jennifer Kilmer, & Becky White!

Thank you all so much for all of your hard work and dedication to CCA and the kids and families we serve. We can't wait for the 4th Annual All the Way for CCA Golf Tournament on April 15, 2016 in Houston, TX. Register today!

Friday, February 12, 2016

I Wonder, by Haley Biane

Not only is Haley Biane a young scientist, but she is also now a CCA volunteer and a writer. She shared this poem she wrote with CCA and we knew it belonged on our blog. Enjoy this stirring poem, and you can still help Haley with her research by taking this survey if you are a student. 


I Wonder
By Haley Biane

Do you ever wonder what it’s like to walk in someone else’s shoes?
Live their day minute by minute and do everything they do?
I wonder.

I wonder what it’s like to be wealthy or to be poor,
To be just born or knocking at deaths door.
I wonder what it’s like to be a girl or a boy,
To have a facial abnormality and be ripped from your joy -
When you go to school or wherever you go
Please stop staring, and just say hello.

I wonder what it’s like to be laughed at and pointed to
To be made fun of and ridiculed for something you didn’t do.
We don’t have a choice of how we will look when we’re born
Whether we’ll have brown hair, blonde hair, or green eyes on our first morn.

You can’t help it if you’re born with
Treachers Collins
Or Cleft Lip

Just like you can’t help it if you have
Lots of hair
Or are light skinned
or dark.

That’s how we are meant to be, it's how we are made,
We should all walk in the sunshine and not stand in the shade.
We need to open our eyes and see we are all the same
We all need love in our hearts, we are all playing the same game!
We all have feelings, we all hurt, and we all bleed
We need to hold each others' hands and help those who are in need.

Let’s not Judge
Let’s not hate
Let’s come together
And appreciate
Who we are, made with love
From God up above.
We must judge less
And choose to LOVE.

Thursday, February 11, 2016

Adults & Alumni Respond to The X-Files

Many of our fans and followers on social media were unhappy with the portrayal of several craniofacial conditions and rare diseases on the recent revamped series, The X-Files. The Adults & Alumni subcommittee of CCA drafted this letter in response to the show and in hopes that we can continue the discussion around the portrayal of differences and disabilities in the media.

You can read it here, signed by Chair of the committee, Frederick Seitz.

Wednesday, February 10, 2016

Ask the Doctor: What about the Vertex Bulge?

CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves ([email protected]) and we will ask Dr. Earl Gage of Kids' Plastic Surgery in St. Louis to answer them. Thanks Dr. Gage for helping spread information and resources for our cranio families! Today's question is about the sagittal bump.

Ask the Doctor

Question: On several forums, we have heard of post-op sagittal craniosynostosis children who develop a vertex bulge (more commonly referred to as a "sagittal bump"). Some doctors seem to indicate that this alone indicates the need for a repeat surgery, whereas other doctors adopt a wait and see approach. Is the vertex bulge always a sign of intracranial pressure if the child is otherwise developing well? What could be the other causes of the bulge/bump?

Answer:  Small bumps on the skull or other contour irregularities are common after cranial surgeries for craniosynostosis. A large vertex bulge occurring after sagittal syostosis correction, however, is rare. In fact, I have only been able to find one report of this phenomenon from a craniofacial team in Oxford, England1.

In their 2008 series, Marucci and colleagues reviewed 89 patients with isolated sagittal synostosis treated with strip craniectomy. Their patients had the surgical procedure between 5-7 months of age. None of the children had helmet therapy after their procedure as is commonly done after similar procedures here in the United States. Seven of their patients developed a prominent vertex bulge in the months following surgery. All seven of these patients were re-imaged with MRI after the bulge was noted. In 5 patients, there was evidence for elevated intracranial pressure by exam or by MRI, and formal intracranial pressure measurements were done. Pressure was elevated in 4 of these patients. Three patients with elevated pressure and 2 with normal pressure were also found to have fusion of additional cranial sutures on the MRI scans. Genetic testing was done in all children with a vertex bulge, and abnormalities in the fibroblast growth factor receptor gene were found in 2 patients, both of whom also had elevated pressure and additional coronal suture fusion. All seven of the patients ended up having secondary open cranial remodeling procedures, and all but one had resolution of the bulge with open surgery.

While I can’t say with certainty, I suspect that the recommendation for additional surgery in children with a vertex bulge is based, at least in part, on this study. In my opinion, the occurrence of a prominent vertex bulge after strip craniectomy raises at least two important questions. 

First, was the original diagnosis of isolated sagittal synostosis correct? Sometimes, multiple suture craniosynostosis can present atypically and may be misdiagnosed initially, even by experienced surgical teams. When a vertex bulge occurs, it should raise a flag that additional testing for FGFR-associated and other syndromic craniosynostoses should be considered. 

Second, is strip craniectomy really adequate treatment for sagittal synostosis, or is the decompression with these smaller procedures inadequate? Emerging data on endoscopic assisted strip craniotomies seem to suggest that strip craniectomy with post-operative helmet therapy can be expected yield acceptable results when performed by an experienced team, when families are compliant with post-surgery helmet regimens and when the helmet orthotist is good at their trade. The shorter operative times, shorter hospital stays and decreased likelihood of blood transfusions associated with these smaller procedures as compared to open cranial vault procedures are also appealing. However, every craniofacial team should make honest, periodic assessments of their results for head shape, need for re-operation, occurrence of complications and incidence of developmental issues to be certain that their results are as good as those achieved with open cranial remodeling procedures which remain the gold-standard treatment.

So what does this mean if your child has a vertex bulge after strip craniectomy? I would recommend repeat imaging (CT or MRI) as well as a repeat eye exam be done to look for evidence of elevated intracranial pressure and to rule out multisuture craniosynostosis. Where there is evidence of elevated pressure by imaging or eye exam, formal intracranial pressure measurement should be discussed with your neurosurgeon. In addition, your pediatrician or a developmental pediatrics specialist should also monitor your child to be sure that your child’s development is progressing as expected. Your team should also strongly consider genetic testing for fibroblast growth factor receptor gene abnormalities and possibly other genes associated with craniosynostosis if these tests were not previously done. Your craniofacial surgeon should also regularly monitor your child’s head growth and follow your child for headaches, vision complaints or other symptoms of elevated pressure like nausea and vomiting.  If additional sutures are fused, there is deterioration of the head shape or there is evidence of elevated intracranial pressure, repeat surgery should be considered.

However, if all of these evaluations are normal and the vertex bulge is mild, then taking a wait-and-see approach is appropriate, deferring the decision on repeat surgery until your child is older and becomes concerned enough about the head shape to want another surgery.

1 Marucci DD, Johnston CP, Anslow P, Jayamohan J, Richards PG, Wilkie AO, Wall SA. Implications of vertex bulge following modified strip cranioectomy for sagittal synostosis. Plastic and Reconstructive Surgery. 2008 Jul; 122(1):217-24.

Thursday, February 4, 2016

Pro Tip: Enjoy the Beach with a Trach!

Today on the blog, CCA Mom Shannon shares a tip she learned on how to help her son enjoy the beach --- with a tracheostomy. Shannon Polzin is a CPC, Medical biller and the mother of Logan Polzin in Massillon, Ohio. She enjoys making fun memories to reflect on and playing ball with the family dog, Leo.

My 12-year-old son, Logan, has always wanted to visit the ocean and play in the sand and water. But with a trach (even though it’s capped), this is something that is dangerous. After researching for years, we finally found a way to take him to the beach to let him be a kid and have fun! So, we are excited to share our solution.

We bought some Tegaderm (usually used to cover IVs) and poked a small hole in the Tegaderm and placed his trach through the hole.  We then carefully pulled the paper off the Tegaderm (to show the sticky side) and  placed his trach back in his neck,  sticking the Tegaderm to his neck around his hole.

What my son liked most about this is that it was semi-flexible and transparent.

It is important that your child is capped and doesn’t go under the water…this idea is only water resistant… not water proof!

It is also important to monitor the Tegaderm to make sure it doesn’t begin to peel away from the skin if your child wears it longer than a few hours.

Remember to stay with your child in case he or she would get hit by a wave and fall so you can keep him or her safe.

Make sure the child keeps it on until it's time to shower.  Once you are sure all the sand has been removed from his or her body, then you can peel off the Tegaderm (like a big sticker).

You can find this item on Amazon*…or just search the web for a company that you like.
Tegaderm also comes in different sizes…so make sure when you are ordering you get the right size based on the child's size and the area that needs covered.

Then, get out and enjoy some fun in the sun!

*Make your shopping count! Shop through the iGive/AmazonSmile portal and double your donation, just by shopping!

Tuesday, February 2, 2016

Join CCA's Birthday Club

What is the CCA Birthday Club?
The CCA Birthday Club is a way for CCA supporters to raise funds to benefit CCA and help us fund our critical services, especially our Annual Family Retreat & Educational Symposium scholarship fund.

Why did CCA start the Birthday Club?
It's fun to celebrate your birthday! However, a lot of people would rather give back on their birthday than receive. We believe the Birthday Club is a way to share your celebration with your friends and family and make it a positive way to rally around the cause of kindness.

How can I sign up and fundraise?
First, please contact Jill in the CCA office to let her know you want to be in the CCA Birthday Club. That way, we can make sure you will be recognized for your fundraising efforts.
You can use popular fundraising sites like GoFundMe* or you can use CCA's own fundraising pages. If you contact us, we will set up a personalized page for you on our website. You can add photos, a story, a video, and more! Just contact us for more info.

Do I need to notify CCA before I set up my fundraiser?
Yes! That way, we can record your participation, order your special prize, and plan to recognize you at Retreat, if you attend.

Does it have to be done online?
No! You can also organize a fundraising event, birthday party, collection at your office, and more. Everyone is welcome in the Birthday Club, whether you hold a live or virtual event.

What is the special prize?
Now... if we told you that, it wouldn't be a surprise, would it?

*Please make sure you designate the "Certified Charity" option on GoFundMe. You must select this option to be a part of the CCA Birthday Club.