Leah Wheeler Olsen with Christian, Taylor,
Madison, Elisabeth & McKenzie
Nathan Ellinger & Madison Olsen
A VERY random thing happened to me this last month. As I have mentioned in an earlier blog, Mary Walker, Nathan's OTPT, comes into our home once a week to work with him. About a month ago we were talking about how rare Nathan's abnormal jaw was. Nathan was never officially diagnosed with Pierre Robin syndrome which is the name of the syndrome where a child is born with a VERY recessed jaw. However, because of his recessed chin and airway issues it only partially explains what may be different about Nathan's genetics. Nathan doesn't only have a soft cleft palate; he is missing both palates in the roof of his mouth. He was also born having no natal teeth. It is assumed by the genetecists and neonatal doctors that Nathan's Tetralogy of Fallot, specific cleft palate (they come in several versions with Nathan's being the most rare), small jaw, and simean crease (only 1 crease in the palm of your hand with is most commonly associated with Down Sydrome) that his syndrome, if it is ever discovered, has something to do with the center of his body, with the exception of his hands, not forming properly. Nathan's problems tend to be more extensive than what Pierre Robin suggests. Back to the story though... Mary said that she is currently working with another mom who had a daughter in February that also has Pierre Robin syndrome. "In fact, you ought to go meet with this mom. You two would have a lot in common to talk about and I think that you'd really get along." She gave me her phone number and so I called her later that night.
When I made the phone call, what I really wanted was someone to talk to who could completely understand my frustration of Nathan not being able to eat from a bottle. I also wanted someone to cry with over having a child who is different and will have some extremely serious needs throughout his life. I called Leah and during our first conversation we talked about our kids and she gave me suggestions of what I could be doing to help Nathan enjoy a bottle a little more. We decided we would meet and we set up a play date. Leah called several days later and said she would have to reschedule because Madison was sick. Her voice sounded so familiar to me and so I asked her what her maiden name was. She told me it was Wheeler and she had graduated from Spanish Fork High School in 1999. I couldn't believe it! We had been in marching band together and Jake's best friend, Cody Jensen, had dated her as a freshman and sophomore. Leah and I had dated best friends at about the same time period. We were also good friends because of Marching Band competitions and concert band. We were so excited to be able to see each other again!
After a month of sick kids and rescheduled doctor visits, we finally were able to get together yesterday. We had such a great time talking about old times and also about our new adventures. Leah has two children out of four with Pierre Robin syndrome. Her oldest, Taylor, did not need to have jaw surgery. It may be that Madison will also not need it. Her challenge is that her baby isn't able to lay flat on her back because her tongue will block the airway and she'd stop breathing. Madison is eating out of a NG tube through her nose. She can do that because she doesn't have a nissen like Nathan. Madison is also extremely small for her age because she can't eat properly either. I loved hearing advice from her and seeing that with work, Nathan will be just as happy as Taylor is. Taylor isn't without problems; she still needs extensive speech therapy, but she seemed very happy and ok with herself. That's what I want for Nathan. Sometimes I worry that as he grows to be older he'll be teased about his speech or the countless scars from his open heart surgery, g-tube placement and jaw surgery. He's a boy and it just may be that he'll be proud of his battle wounds. Who knows?
These are the symptoms of Pierre Robin Syndrome:
Cleft soft palate
Jaw that is very small jaw with significant receding chin
Jaw placed unusually far back in the throat
Large-appearing tongue in relation to jaw
Natal teeth (teeth appearing when the baby is born)
Recurrent ear infections
Small opening in the roof of the mouth, which causes choking
One thing Leah told me that really stuck is that Heavenly Father only gives you those challenges which he knows you can overcome. Jake & I were trusted with this sweet little boy to teach him the gospel and to help him overcome his physical limitations. I can only hope that we are up to the task!
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