Monday, January 26, 2009

My Sweet Baby

As most of you know that read the blog, my baby Daniel has had some challenges in his short life. His appointment with the Developmental Pediatrician finally got here and we are now on a road of discovery.

The doctor said that he definitely has right side increased muscle tone (stiffness) and that it is significant. He was very concerned at the size of his head and the way the head growth charted. It was a steady growth path and then suddenly off the charts. I told him that big heads run in the family (big brains and all) and he said it could be genetic, but he wanted to do a CT to make sure there was no fluid building up around the brain or something else causing the growth and the muscle tone issues. I asked him about Cerebal Palsy (CP), if that's what he was thinking and he explained CP in a way I had never heard. He explained that it was simply a definition of the change in muscle tone (basically an effect of something else). So he said that if he had to give a diagnosis right now, that it would be CP. Finding the cause, if we can, thats the goal right now. So we are waiting on the CT results, should be today or tomorrow. After that we'll know more. He said we are doing what we should be for CP, that is, physical therapy. He also has increased muscle tone around his mouth, so we might add speech therapy to work on those muscles, or get a kit that I can use to work on them. So basically, yes, he has CP, a mild case. Why, not sure yet and we may never know. Daniel is doing really well in physical therapy and he is almost crawling. His head and neck are not as tight (he has his days), he is rolling, sitting, going from laying to sitting and believe me, he can get where he wants to go. He is still behind, but he is improving. He also says mama, dada, and various other babblings. He is smiley and happy 98% of the time. He's a very happy boy.

The doctor wanted to make sure that we understood that a CP diagnosis doesn't have anything to do with his cognitive ability.

So right now, we are justing waiting and doing what we've been doing. He is going to follow up with him in 6 months (unless the CT shows something terrible) to check his progress. His team down here are getting him an appointment rather than 3 hours away. The doctor comes here every 3 months. He will order more tests if the CT doesn't give them an answer, most tests can be done down here. If not, we will take him back up to Riley. Whatever he needs we will do.

Though not what we wanted to hear, we know that things could be much worse. We are trusting God and I know, without a shadow of doubt, that God works all things for the good. We are praying that God would do a good work in my baby and I am trusting Him fully.

Daniel is mama's sweet little baby and I am so very thankful for him. Wouldn't trade him for anything in this world.


forever folding laundry said...

Your strength and faith are inspiring. I'm glad you're getting some answers, and that your little guy is as sweet as ever. Will be praying that everything goes OK with the remainder of your appointment.

Boy Mom said...

What an amazing Mamma you are, Daddy too. Daniel is blessed to have you two.

The boy were trying to bring into our home mild CP. He is 17 and perhaps a bit behind in some areas but mostly in the love department. Daniel won't struggle with that so he's already a step ahead.

I'll be praying for him.