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May 12, 2009

A Joel Update

I want to keep you all updated with Joel's progress/non-progress. Since some of you are new readers I will do a short summary....

  • 32 weeks gest. until birth (35.4 weeks) Joel had poor uterine position. He was literally stuck in my ribcage. When he was born he had positional torticolis (the neck muscles were not developed on the left side) and positional plagiocephaly (his head was malformed from a poor womb environment).
  • At birth he had rib indentations in his skull which eventually righted themselves, and his ear was deformed, which also righted itself.
  • At age 4 months Joel was fitted with a cranial helmet for the plagiocephaly, and started with physical therapy for the severe torticolis. Joel starts doing amazingly well with physical therapy, and the torticolis is resolved. It's as if he never had it at all. The cranial helmet came off at 8 months old.
  • At age 9 months old Joel starts having petite mal seizures. He has 1-3 seizures a day for about a week, but we are unable to catch them in time for a doctor to see them. He has a negative EEG. Joel is showing signs of severe developmental delays. He has his last seizure on 11/23/08.
  • At 13 months old Joel is discharged from Physical therapy and started on occupational therapy & speech therapy. He has no language, expressive or verbal. He has a very hard time with fine motor skills, and playing.
Ok, back to today. Joel and the girls are 15 1/2 months old now. Joel still has almost no expressive language, and limited verbal abilities. He screams, or bangs his head. When I say he has a "hard time" with fine motor skills, I mean a pinser grasp that most babies have achieved by 8 months old....Joel is only achieving now. He does not point. He does not have any one labeled....meaning, when you ask him, "Where's Mama?" he might look at Ethan. If you ask him, "Where's the Ball" he might look at the cat.

So, things are moving slow. There HAVE been improvements. SO, don't let me be a debbie downer. He is letting us hold him more now. This has been a much WANTED improvement for ME especially. I love cuddling my big sweet boy. He used to hate it, and would arch away...but he is slowly (with brushing therapy) letting us hold him for longer periods of time now.

He is also wearing denim. This sounds like something silly, but he hated wearing anything stiff before we started therapy, and now we wear jeans often...which is a big deal around here. We are jeans kind of people.

We thought we had a diagnoses of sensory disorder, but more and more it just is looking like it's not the right fit for Joel. It's something more....and I am going to have to wait. Waiting for a diagnoses is very frustrating for me. I am a doer. I like to read, and research. I like to do. I like to expirament with holistic medicine while the doctors wait and do nothing. I want to TRY AND HELP MY SON!!!! But....I will wait. God is telling me to wait....so I will wait.

I will wait.

Joel in general:

Joel is a GREAT kid. I LOVE him. Don't misunderstand me. I am frustrated in the lack of progress, but not in HIM. Not at ALL. He's FUNNY. He's a terribly silly little boy. He loves looking at himself in the mirror. He loves looking at pictures of himself. We joke that he's going to be a supermodel. He also loves giving these gooey baby tongue kisses. So sweet!!!!

He's a sweet baby, and I can't wait to watch God work in him. I know there is a plan. I just need to learn to wait. Waiting has never been fun for me.

5 comments:

AmandaC

Oh, Christa, I'm so sorry that you're stuck in limbo. I hope that the therapy sessions improve and you are able to pinpoint something soon.
It sounds as though he's making small improvements though. Baby steps, baby steps.
I'll keep Joel in my prayers for sure.

Always a Southern Girl

Praise God for the improvements that sweet little Joel has already made! I'll be praying with you as you wait upon the Lord and the Dr's.

My step=son has PDD and it was so frustrating, because he wasn't diagnosed for a long time. But once we got an answer we had a plan for him and we were able to move forward!

Jennifer

Oh, the waiting game is so terribly challenging. I will say a prayer for Joel this evening. Beautiful picture of him on the front of your post.

FrenznickFive

I hate being in Limbo so I am so sorry that you have to be there now with your sweet baby :o( I think you so beautifully wrote about God's Plan for Joel and I hope you start to see what that is soon enough!

mrosev14

Wow that sounds like a very frustrating procedure. I am glad to hear that some of the things are progressing, I can only pray you guys get a diagnosis soon.

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~Christa @ Quintooples