Friday, August 22, 2014

Special Needs Spotlight || Elizabeth & Luke

Hi friends--the winner of the Freshly Picked Giveaway is Doris--who asked for the Heirloom size 8--you won!  I'll be emailing you the details shortly.  Or feel free to email me at thislittlemiggy at gmail dot com.  Congrats!  


 Hi Miggy!  Thanks so much for having our family, I always love Fridays and learning about other special needs families. I am excited to share our story with you.  I am Sarah, my husband is Eric and we live in southern Utah. We have 3 kids, our oldest and youngest are only 29.5 months apart. If their close age isn’t enough to keep us busy our middle and youngest child were born with a birth defect called Craniosynostosis.


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Miggy:  Hi Sarah! Thank you for being with us today. As mentioned in your email you have not 1 but 2 babies with craniosynostosis.  Can you please educate us on this condition?  What causes craniosynostosis, what are the symptoms and/or concerns that come with it and is it treatable?  


Sarah:  Craniosynostosis means that the plates in an infant’s skull that are typically separated by sutures have fused together prematurely. For my babies, this meant their sagittal suture was fused together at birth resulting in no soft spot and long oblong heads, resembling the shape of a football. If left untreated the child will continue to have a misshapen head as well as possibly experience pressure on the brain as their brain grows but is restricted by their fused skull. This can lead to brain damage. There is no known cause for the condition and in our case we were assured it was not genetic. However, after having a second baby with the same condition we are in the process of genetic testing. Craniosynostosis is treatable. Two surgery options are offered. The first is a Cranial Vault Reconstruction, where the fused suture is cut and re-stabilized with plates and screws, or the less invasive approach, endoscopic treatment with helmet therapy, which is the option we chose for both children.  

Miggy: Can you take me back to the day/s Elizabeth and Luke were diagnosed with this condition? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?


Sarah:  When Elizabeth was born in 2012, her head looked funny to me. The doctors assured me that it was from a rough delivery. However, it still didn’t sit with me and I was sure there was a problem. The day we were released from the hospital, we had a pediatrician check on us and ask me if I had heard of Craniosynostosis and explained what it was to me. I immediately burst into tears. In my heart I knew she had this condition but at 6 days old it would be confirmed by a CT scan. Hearing my pediatrician call with the CT results confirming she had the condition was one of the worst days I had experienced. New mommy hormones mixed with the news of a birth defect didn’t sit well with me. I couldn’t eat, I couldn’t sleep I couldn’t think. I spent the next 2 months awaiting her surgery crying with extreme anxiety.


When Luke was born earlier this year, I suspected he had the same condition, and it was also confirmed by a CT scan at 6 days old. I responded the same way, with tears, but this time I was able to hold it together much better since I had been through it before, I knew what to expect and that helped calm my nerves.



Miggy: Explain how craniosynostosis affects your day-to-day life--or does it?


Sarah:  Elizabeth finished helmet therapy in June 2013, she acts and functions like a typical little girl, she continues to get scans and meet with her surgeon once a year for 5 years. The only lasting effect she has is she won’t be able to play contact sports. Luke is 2.5 months into his helmet therapy. He wears it 23 hours a day. He overheats quickly and can’t spend time outdoors wearing his helmet, it frustrates him as he is trying to grasp new skills such as sitting and crawling, and it frustrates me that I have hard time kissing his sweet little head and am constantly getting bonked with a big hard piece of plastic.

Miggy: What are the biggest worries you face for your kiddos?   


Sarah:  Like most other Moms I am worried about how other people will respond to Luke in his helmet. With almost a year of helmet therapy under our belts (including Elizabeth’s time) we have heard them called many different names, some kids are nervous of them and wonder why they are wearing a helmet. Parents and other adults say strange things, act strange and try to encourage their kids to stay away from us not to ask too many questions. My biggest worry however is them needing an additional surgery later on in their lives. Sending your child into surgery especially for work on their skull is an overwhelming task.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?   


Sarah:  Helmets have become so normal in our family, Elizabeth and their older brother Logan, are constantly asking to wear a helmet like Luke. It’s quite funny seeing them all in a helmet, looking like they are part of a small football team.


Miggy: How can people best approach or respond to your kids? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Sarah:  I appreciate when people ask questions and are polite about it. It’s much nicer than just speculating or avoiding.

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son/daughter?
Sarah:  My oldest child is not quite 3 yet, so I haven’t seen a whole lot of sibling support and with this being his second sibling, it’s completely normal for him. I think he thinks all little brothers and sisters come with surgery and helmets.

Miggy: If you could say something to the mom who is just starting on this journey of Craniosynostosis, what would you say?   What would you say to yourself if you could go back in time?    

Sarah:  I would tell them, the wait to surgery is definitely the hardest part. Once surgery comes it will be so amazing to see how resilient your child is and just how quickly they recover. I would highly recommend joining a support group. Finding support from other people in my exact same situation has been such a lifesaver!


Miggy: What is the biggest lesson you’ve learned since becoming a Craniosynostosis mom?


Sarah:  I have learned to be sensitive and aware of the needs of other people.
Also, you can learn more about craniosynostosis at Craniocarebears.org, an incredible non-profit organization that provides so much support to Craniosynostosis families. They send a care package to your child before surgery and helped to calm our nerves.


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Sarah, thank you so much for sharing your beautiful family with us today.  I don't know how many times I've read "I just thought something was off, but the Dr kept telling me everything was OK..." scenario.  This isn't to diss Dr's--they've got a tough job and many of them do it well.  I DO want to point out how important it is to listen to our instincts, especially as parents.  I know I experienced those "gut" feelings about Lamp and her stomach when the Dr's were trying to tell me it was probably nothing.  And I've heard it time and time again from other parents of special needs kiddos.  Trust your instincts, be a little (or a lot) pushy and if necessary get another opinion.  Sarah I also liked that you said find a support group--so important!  So great that you were actually able to find one for craniosynostosis families--it really does help to have someone you can talk to whose walked down a similar road. Thanks again Sarah and give those precious kiddos hugs and high fives from me!

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.  

Have a great weekend and stay awesome.   

2 comments:

  1. what an adorable family x

    ReplyDelete
  2. Anonymous1:44 PM

    I hope neither gorgeous baby ever needs to have surgery for this condition. What a bunch of cuties.
    Mel

    ReplyDelete