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It is just a label….a damned horrible label

Posted Jun 08 2009 7:00pm 1 Comment

I have been putting off this post for almost a month now, time to bite the bullet and get it out there…..

Derby has been our little stubborn pistol as of late. The kid wants to move, he wants to feed HIMSELF and he wants to do things HIS WAY. The feeding has really got me frustrated. Loen is a good 2 pounds and 2 inches taller than Derby. Loen will drink 9 ounces of milk but I have to fight Derby to take 5. Loen will eat just about anything, but Derby is on a crunchy diet. Goldfish, Kix, snap pea crisps and his favorite yogurt. He clamps his mouth shut when I try to feed him something healthy and will throw the food he doesn’t want off of his high chair. I’m pretty sure the stubborn streak does not come from me. He has been hovering in the 16 pound range since December. Sometimes we are 16.5 or 16.12 then 16.8. I gave away his 6-12 month clothes because I thought we had grown out of them, but alas I’ve had to go by more pants since he crawls out of his 12-18 month size. It is frustrating and depressing and I don’t know what else to do.

Then we had our biannual CCS evaluation (California Children’s Services provide all of Derby’s therapy) last month. We see Derby do a little more everyday. Play harder, more independent, use his left hand. Therapy has done wonders for that little boy. While he may get frustrated and yell when they work with him, he will go home and use his new found skills to say climb up the ottoman. To be eligible for services a team of doctors go over his therapy notes, assess him and then decide if he still qualifies. Tadd was unable to make it for the first evaluation, but he came this time. Previous team meetings focused on all that he has accomplished while this one was about areas where he is lacking. Which is understandable, because it is a meeting of the things they want to work on and what their goals will be for the next 6 months. It is still hard to hear a laundry list of things your son is unable to do or doing incorrectly. They have been addressing his left sided weakness since the beginning of therapy. In the past few months he has unclenched his left fist to crawl,pull himself up to cruise and use it to help pick up heavy toys. I was feeling good with his progress , but then the CCS pediatrician blurts out “Ok we are going to call this CP with left sided hemiparesis” In laymen’s terms she diagnosed him with Cerebral Palsy resulting in left sided weakness. In the back of my mind I knew we were going to be dealing with limitations for awhile, they weren’t going to magically go away. Though when she said “CP” I had to swallow down my tears. I am fiercely protective of my children. I hate when people talk about things that can’t or won’t do, I want to bite their head off. I thought of how people would react to this diagnosis. Would they say “Ahh it makes sense since the kid has cerebral palsy” and just write him off? Would they think the worst, imagine a kid in a wheelchair, etc…? CP is such a broad spectrum diagnosis. I imagine it like saying your car was in a car accident which could range from a little fender bender to being totaled. Derby is not extreme but we don’t know where exactly he falls on the scale. Infants brains are amazing with their ability to rewire and deal with such obstacles. In a few years it may be unnoticeable, but we just have to wait and see. I thought back to all of the cranial ultrasounds that were negative. What could have caused this brain damage? In nursing school I remember an instructor saying most causes of CP are due to hypoxia. How many times has Derby been hypoxic? His agpars were 1,5, and 9, he was vented for 9 weeks, he hasn’t had the easiest time recovering from surgery, ughhh which was it? It is more prevalent in preemies, low birth weight babies and twins… check check check. Tadd asked the doctor not to label him with CP for now. It is inevitable but they said they would wait until he is 2.

So now all of our readers know. I should give fair warning I still don’t want to really talk about it. I should also warn I might give the evil eye if I hear any disparaging remarks about him, but hey, isn’t that a mom’s right?

He is our wonderful, sweet, stubborn, and amazingly tough little boy.

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My son was diagnosed as well.   Riley was premature (10 weeks).   He has the same diagnosis (CP with left hemiparesis).   It is affecting his left arm and leg.   We started PT last week and it's amazing how many things he has picked up on and is now doing.   Little guys are stronger than we think sometimes.  

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