Off the Charts!
Usually the phrase off the charts is indicative of something great. But when it refers to a 16-month-old's head circumference it's not so good. Ira had two MRIs while in the hospital. The first was done while in the NICU and the second while in the PICU. They both showed the same thing: extra fluid between his brain and skull and slightly oversized ventricles. According to one neurologist, it could mean something or nothing. Time would tell. But he insisted that we have a neurologist follow Ira. And so today, we went for the first time to see his neurologist.
Ira's head size keeps getting bigger and bigger. It measured 44 (cm?) last October and 54 today. While Ira is very sociable and is showing signs of good muscle tone and physical development, the doctor - understandably - was concerned. She, the doc, wants Ira to have another MRI done in October which means they will sedate him again...which means that he'll be introduced once more to those drugs he liked so much while in the PICU. In the meantime, the neurologist wants Ira to see an opthamologist so that s/he can check if there is pressure behind his eyes and a geneticist to see if his head size has anything to do with his original diagnosis (CDH). Great, add two more doctors into the mix. Why not?
Laura and I have avoided talking too much about what we think of Ira neurologically speaking. We've avoided it because one, there's no time to talk about that kind of thing and two, because it's hard to imagine that on top of all of these other complications Ira might not be neurologically typical (NT). But maybe there's another reason Laura and I haven't talked about it. Maybe we haven't gone there because it doesn't matter. Who cares that Ira might not be NT? Ira's alive, breathing, smiling, playing and enjoying his sister and dog. He loves the outdoors and gets crazy silly when Laura walks in the room and laughs hysterically when I tickle him. Yeah, I think this is a more likely possibility. It just won't matter, in the grand scheme of things, if Ira is not NT. I love my son right now.
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Ira's head size keeps getting bigger and bigger. It measured 44 (cm?) last October and 54 today. While Ira is very sociable and is showing signs of good muscle tone and physical development, the doctor - understandably - was concerned. She, the doc, wants Ira to have another MRI done in October which means they will sedate him again...which means that he'll be introduced once more to those drugs he liked so much while in the PICU. In the meantime, the neurologist wants Ira to see an opthamologist so that s/he can check if there is pressure behind his eyes and a geneticist to see if his head size has anything to do with his original diagnosis (CDH). Great, add two more doctors into the mix. Why not?
Laura and I have avoided talking too much about what we think of Ira neurologically speaking. We've avoided it because one, there's no time to talk about that kind of thing and two, because it's hard to imagine that on top of all of these other complications Ira might not be neurologically typical (NT). But maybe there's another reason Laura and I haven't talked about it. Maybe we haven't gone there because it doesn't matter. Who cares that Ira might not be NT? Ira's alive, breathing, smiling, playing and enjoying his sister and dog. He loves the outdoors and gets crazy silly when Laura walks in the room and laughs hysterically when I tickle him. Yeah, I think this is a more likely possibility. It just won't matter, in the grand scheme of things, if Ira is not NT. I love my son right now.
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posted by jch at
7:33 PM
5 Comments:
Joe, we will say an extra prayer for Ira. Be sure and tell everyone when the MRI is coming in October, so we can pray about that at the time.
You have the right attitude--it doesn't matter. It sounds to me as if Ira's development is actually coming along rather well. Hope this turns out to be no "big" deal. (bad pun I know)
we continue to lift you guys up and give thanks for the blessing of your sweet boy. what a precious gift he is, and how blessed he is to have parents who love him so very much
And we love Ira too!
Let us know when he goes for his MRI in October.
Still praying..
praying for you all. I have posted before I have a sister with mental retardation and you love them for who they are, no she cannot walk or feed herself but she has a smile that lights up a room and a laugh that you can hear for miles--it was the greatest example my parents could have shown me. She is 32 and still lives with my mom and now my own daughter has a relationship with her and sees in her a person nothing else--if we all had the mind of a child what a more gentler world we would be in.
what strength you have--he could not have better parents than the two of you.
We will continue praying for Ira and love him no matter what happens. He is truly a gift. My friends and relatives follow your blog through my son's blog, and they were so excited to see Ira standing up.
Off the subject, my husband will be at the same football game you posted about! Maybe he will get to meet you!
Jonathan's mom
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