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New Here...intro!

PainterladyPainterlady member
in Special Needs
Hello ladies! I'm coming over from the October 2013 board to say "hi"!
My son Jackson was born on September 26th with a cleft palate. Apparently he squished his chin in utero and prohibited his mandible from fully growing. In turn, his tongue had nowhere to go so it was pushed to the roof of his mouth. This prevented his palate from forming properly. He's faced a number of issues so far...mainly with feeding and breathing...and we have many more to come. We met with a cleft palate team about two weeks ago at Geisinger in Danville, PA to set up a game plan for our little squish. He's to have surgery btwn 9-12 mos to reconstruct his palate and will have many challenges to face in the next few years such as speech, hearing loss, and feeding. He's a great baby...so much easier than my other two lol. He really is a joy! Just wondering if there were any other mom's on this board who have had children with cleft palates?
Oh, and my daughter Bailey, who is eleven, was recently diagnosed with a mild form of Aspbergers. She's doing very well...getting the help she needs and making great strides socially. So proud of her!
Anyway, looking forward to becoming part of the group! Nice to meet all of you!
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Re: New Here...intro!

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    Assembly_ReqdAssembly_Reqd member
    Welcome!
    WAY 2 Cool 4 School


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    PainterladyPainterlady member
    Thanks ladies for the warm welcome!
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    funchickenfunchicken member
    Welcome! DD1 has ADHD and SPD, so I don't have any experience with cleft palates. This is a great board, very supportive.
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    Glow360Glow360 member
    My son is 13 with bilateral cleft lip and palate. When he was born, he required special feeding bottles with long nipples. They reconstructed his lip and palate the first year. The first year was tough because of feeding. After surgery, he was fed with a long syringe, I refused a feeding tube and got really creative with feeding. My son has had 15 surgeries to date, our kids have to have surgery until they are done growing. My son sees a team of doctors called a cleft lip and palate team. It makes up a surgeon, a ear nose and throat specialist, audiologist, speech therapist and specialized pediatric dentist and orthodontist. I felt like I lived at the Children's hospital the first year. For me, it was high stress. I highly recommend counseling during the first year, or get a strong support team going because why we are having to be strong for the family and our child.....for me, I neglected how I was feeling inside that first year. There were days I wanted to break down and cry and couldn't. Your emotional self needs to be cared for too :) I have been down this journey almost fourteen years now :)
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    Glow360Glow360 member
    P.s. I am on the bump because I am pregnant with twins, I do not know if they will be born with cleft lip and palate yet, but if they are my heart and home will be ready for them :)
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    PainterladyPainterlady member
    Glow360 said:

    My son is 13 with bilateral cleft lip and palate. When he was born, he required special feeding bottles with long nipples. They reconstructed his lip and palate the first year. The first year was tough because of feeding. After surgery, he was fed with a long syringe, I refused a feeding tube and got really creative with feeding. My son has had 15 surgeries to date, our kids have to have surgery until they are done growing. My son sees a team of doctors called a cleft lip and palate team. It makes up a surgeon, a ear nose and throat specialist, audiologist, speech therapist and specialized pediatric dentist and orthodontist. I felt like I lived at the Children's hospital the first year. For me, it was high stress. I highly recommend counseling during the first year, or get a strong support team going because why we are having to be strong for the family and our child.....for me, I neglected how I was feeling inside that first year. There were days I wanted to break down and cry and couldn't. Your emotional self needs to be cared for too :) I have been down this journey almost fourteen years now :)

    Thanks for the great info! We do have a team of specialists which we met with about two weeks ago. Seems he has Pierre Rubin Sequence which basically means he squished his chin in utero prohibiting it from growing chis tongue therefor had no place to go so it settled in the top part of his mouth again prohibiting his palate to properly form. He feeds with a haberman bottle and does great! It took awhile but he's an old pro now. Surgery will be scheduled in six months at our next appt. The surgeon is banking in just one surgery, but we'll have to see. I know we'll have a long road ahead of us but hopefully it will all work out!
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    PainterladyPainterlady member
    Sorry for the typos...I'm trying to feed and bump at the same time lol. Good luck with the twins!
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