Wednesday, October 10, 2012

Update on Simeon

 So many of you have prayed (and are still praying) for Simeon
I am so appreciative for those prayers
I wanted to give a sort of update
We've visited with a dentist, his surgeon and
are meeting with his surgeon and another surgeon to look at his 
mouth,
 (we call it his "front piece" lovingly, but it is called
 his Prolabium and Premaxilla, 
it contains his front teeth buds, including his adult teeth buds)
His top lip (the one the surgeon made for him with his first surgery)
has grown attached to his "front piece"
That top lip is supposed to push that piece down inside his mouth, 
into place and then the next surgery would be the palate surgery, 
usually around 12 or 13 months.
His sides of his mouth, his gums have grown closer together (from sucking, which is natural)
so there is actually not enough room in his mouth for this to go down
The dentist looked at his mouth to see if anything could be done,
nothing can from his standpoint, there are no teeth yet and they really can't do anything with that 
til his adult teeth start coming in, around age 7
They would first need to surgically move his sides of his gums (mouth)
out more, to make room for the next surgery of pulling that front piece down and into place, 
with some kind of mouth piece (attached surgically)

SO
in my quick version of this:
He will look like this, with added teeth sticking out
(like the children in pictures you see in other countries)
til he's 7!!!

His Premaxilla is unusually large compared to most babies with a bilateral cleft.

(hat made by Amy)
 Now, you must know that we love him, exactly and perfectly the way he is.
The way God made him.
Every time I see him and hold him and kiss him,
I am reminded of God's Creation,
How when he was being Created, there is just one thing that was not attached, and 
brought together (his cleft lip and mouth)
God made him this way on purpose,
God does not make mistakes, He does not forget things.
I know I love my children, but to go through the things we have for Simeon,
I am amazed at how much love we have for him (and all our kiddos)
and that if I have that much love for my children, 
how much Love then, does God have for us?
Much, much more!!!
What a gift he is to all of us.
Tom and I have decided to get a second opinion, in the Twin Cities,
at the Children's Hospital down there
Hoping maybe that they have seen something similar and 
will know what could be done if anything.

In my mind, I thought he would look "normal" (to the world)
by a year old.
I knew he would need several surgeries by age 18
but
now know it will be many, many more and til he's actually 25!!


All this can cause a person to question
to wonder "Why?"
To wish different
To feel it is the worst news.
But
We have faith
We TRUST
We love and accept him, always, no matter what he looks like, 
We only see a beautiful little boy, with bright eyes and a killer smile
that melts my heart every time I see it!!
So
we know
it's not the worst news.

I think God sees us that way too
Through all our flaws, 
(we have many)
He only sees our soul
and it's potential
It's beauty.

Thank you God for this beautiful, perfect little boy!!



29 comments:

  1. Jamie Jo, I know a handsome and wonderful Catholic homeschool boy, now college student who had this youth. Even just this summer he had some nasal surgery. I will share this post with his mother.

    I do continue to pray for Simeon...for all you are going through. He is made in the image and likeness of God as you so poignantly point out. Hugs to you!

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  2. Jamie,
    Every time I see a picture of your little Sim, with those big, smiling, beautiful blue eyes, I just remember that "the eyes are the window to the soul."
    What a beautiful, much loved little guy. And as you pointed out, God made him this way on purpose.
    Nevertheless, your quest for help in The Cities is absolutely understandable.
    Praying you find some answers at Children's.
    Blessings~

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  3. Continued prayers for you and little Simeon (we remember you every night in our rosary, the kids never forget!). I completely understand your anxious mommy heart. I would be the same. All is a blessing, but sometimes (when you're going through it) it doesn't always feel that way.
    You and Tom are amazing parents and I think you are completely right to seek out a second opinion. The bigger hospitals in the big cities do, naturally, have more experience with this sort of thing. God bless you all.

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  4. Who could not love that sweet little Sim?! He makes me smile every time I see him (love that hat, by the way).
    I appreciate the updates, Jamie. Simeon is and will continue to be on my prayer list!

    Blessings!

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  5. Hi Jamie! It's been awhile since I've been making the rounds. You were the first on my reading list. :)

    I wanted to share with you that my niece has a hemangoma on her lip area that travels to her eye area. My sister has had it treated since she was about 6 mo old. She's turns 10 next month.

    They have traveled to Operation Smile in SC (?) and sought treatment there. They have been most pleased with the care & doctors. They do have some things done local under the direction of the SC dr.

    If you are interested in me getting the name and futher information I would love to pass that along. Not that the care here in MN isn't wonderful. :) And I'm not suggesting anything about your decisions. Only that Operation Smile was wonderful for my sister/niece.

    I rarely see my niece's hemangoma even though it's been a part of her for 8 years. She's just the beautiful girl God made.

    Your baby is just as beautifully made. :)

    Many blessings.

    Tina

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  6. L will probably need another surgery and lots and lots of speech therapy. It's sad all the things they have to go through. But he has been the biggest blessing :) I am so grateful we got chosen to be his parents :)

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  7. Jamie, You are totally right! He is absolutely beautiful just as he is! He has an infections smile and beaming eyes! Although, it is never a happy time when you see the sorrow young children will face in the future. You and your entire family have been very blessed! And you will forever be in my prayers.

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  8. Oh, and I forgot....Yes, get a second opinion! My friend has a baby boy with an intestinal problem (from birth) the doctors at our local specialist hospital gave-up on him. But a hospital 2 hours away are saving him!! He faces several surgeries too! But we all are just so happy this other hospital was able to save him! Have hope! God Bless.

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  9. That's some rough news, I'm sorry.

    I was reading the blog of a mom whose 7th(ish?) child was born with Down Syndrome. Her oldest daughter, maybe 16 at the time, just sobbed. When the mom tried to comfort her, "I know it's hard to have a sister with a disability" the daughter said, "No, that doesn't bother me. I just don't want anyone to make fun of her."

    We don't wish for "better" children, but it sure would be nice if they had a better world to live in, where differences were accepted with love and compassion. Thank God Simeon was born into such a loving and large family. He will do great, and he will be stronger for it!!!

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  10. Oh, and I think a second, third, fourth opinion is a GREAT idea. Keep asking questions until you are satisfied with the path forward.

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  11. A second opinion sounds like a great idea. Little Sim is so sweet and beautiful!

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  12. We will be praying for your consult! Hugs and prayers :)

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  13. Simone is beautiful just the way he is, but the world is cruel outside our homes. What we see as beauty and a gift, others see as freakish and scary. They point, comment, judge and even ridicule. That's when you pray and thank God for your blessing even more. We are learning this ourselves with Liam.

    I agree with the others, get more doctors involved. Don't settle on just one opinion. There is also someone who can help. It may be a long search, but its worth it. Good luck. We are keeping your family in our daily prayers!

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    Replies
    1. Always, not also. Stupid spell check on my phone....lol.

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  14. I agree with Monica..He has one of the best families in the world taking care and loving him so much.
    He is such a handsome dude in his hat. Does he keep it on?
    I am glad you blog and post so all these mamas can support you and pray for you. Since I have known Sims since birth I really cannot imagine him any other way. He is perfect the way he is.

    Give him lots of hugs and kisses from me.

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  15. Jamie Jo, you are so right. everything Our Lord does he does for a reason, to strengthen us (or to help us realize how weak and in need of Him that we are !!) or to bring us to deeper faith, or whatever His purpose is. We ((I)) often don't see that purpose until years later, and then have an aha moment. Your S is so perfect, made in the image and likeness of Our Creator, and on the path for great things in his life !! You know the saying, if He brings you to it, He'll bring you through it! He always gives us the tools to conquer our fears, and meet our challenges. (that doesn't mean that prayers aren't appreciated, :) and we are keeping you and S in our family's prayers).

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  16. You know we have loved Simeon from day one Jamie and only want the very best for him. As Tina mentioned Operation Smile has been performing miracles for a long time and I have personally been a member of CBN for years and part of our donations go to this ministry. Just saying it was a great thought.
    Hugs and prayers continuing,
    Odie & Linda

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  17. We are all "fearfully and wonderfully made." God loves your little boy, more than even you do. He will bless and care for him and inspire you what to do and where to go for help and comfort. Will continue to remember Simeon and your family in my prayers.

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  18. Thanks for the update, Jamie Jo. Definitely agree with you and others about second opinion. Little (or not so much now!) S is in my prayers.

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  19. We added him to the lists of prayers that the teens took with them to Rome. I hope you know how much your son is loved. We have never met him but love him through so many pictures and blog posts. Your kids love so purely and show us all by their unconditional love. I can't even begin to understand all the aspects of this that you much deal with but I know that God must love you very much. Thank you for being so open and sharing with us your walk.

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    Replies
    1. OH, Neen, that is so thoughtful of you, I appreciate it so much. Amazing how this little bloggy world brings us all so close together!

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  20. Jamie, thank you so much for your kind messages on Dominic's caringbridge. Thank you too for sharing your story it has lifted me up and has given me courage, it has helped me not feel alone! I am sorry for your new news, it is difficult news. You have a beautiful outlook though, he is blessed to have you as his momma. He is beautiful Jamie and he is loved! When is his next surgery? Is there one before the Dec 18th one? I will keep you all in prayer on that day, we will still be in Boston for Dominic's surgery so I will be praying for your family.

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    Replies
    1. Mary, his next surgery is now scheduled for November 8th....on his face then his kidneys 6 weeks later on December 18th.

      (makes Christmas seem much closer this way doesn't it?)

      Oh, I'm praying for your sweet Dominic and all of you too!!

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  21. Aww, he looks so cute in his hat!!
    You know I am praying and I will continue to do so. We will make you all a special intention next month since it is the month of Thanksgiving and it seems appropriate. I appreciate your thankful posts so much!
    I hope you can feel all the love and prayers that are coming your way.

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  22. Hello,
    I'm a brand new visitor to your blog....I "found" you from your comment on Celeste's blog (The Great Adventure). My brother was born with a cleft lip and palate 37 years ago. It was the worst case the doctors (at the time) had ever seen. He had about seventeen surgeries in all....and he looks so handsome today!!!! I always thought he looked perfect. He and I have always been very close. I'm sure now the technology is even better too. I don't think my brother ever needed speech therapy either...maybe only for a short time. Anyway, he is now a speech therapist!!! Your son is darling.....

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    Replies
    1. Laura--I would love to see your brother!! I know my kiddos (and my husband and I) think Simeon is perfect the way he is too. That's love and acceptance of God's perfect creation!!

      Welcome!!

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  23. Hey,

    I'm new here too. I google search images of clefties with teeth and your little man "popped" up! He's SO Handsome. My son was born in April 2012 with a complete bilateral cleft lip and alveolar ridge. His premaxilla sticks out pretty far, I hardly notice it but I'm the Momma so I guess its different. He had his lip repair done at 7 weeks and just cut his first tooth :). I can imagine how hard that news is to deal with. My biggest concern with Carter's cleft is that he will be picked on. I honestly have told myself daily (since January) that God does NOT make mistakes. He made both of our little guys just they are with a wonderful purpose. I will be praying for you and your family.

    I'm glad you're getting a second opinion. Not all cleft teams are created equally. We live in VA and use the VCU craniofacial team, they are fabulous! :)

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    Replies
    1. Smiles--If you look on my sidebar, under the category "Simeon" you can see pictures of him before his first surgery...or go back to "January" and you'll see him too.

      I, too, believe that God made him perfect, and makes no mistakes. Every time I look at my Simeon, I am reminded of God's Creation because of one part not coming together, God wanted him this way and He knows best.

      I'd love to see some pictures of your sweet little Carter. Email me if you want: jamiejo99 (at) gmail.com (no spaces)

      I'll be praying for you too.

      I am not as worried about kids teasing, probably because we homeschool, but I have run across some remarks from children, who now understand, it's just different and they need education. I always try to catch strangers before they speak, and say something stupid, because they will if I let them. I explain before they talk, he has a cleft.

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