Wednesday, September 9, 2009

A little more information

Yesterday when I got home Jude was very fussy, VERY FUSSY! His grandmother had been rocking him trying to get him to quiet down, but it wasn't working. I took him, and wrapped him tightly in a blanket which seemed to make him a bit happier. I believe Jude likes feeling secure, and this leads me to want to look for some sort of compression blanket. Normally if Jude is just whining he will pucker out his bottom lip, let out a whine, and he doesn't shed any tears. Last night real tears fell, and I knew he was hurting somewhere. Mike stated Jude has two seizures yesterday so I assumed he had a headache and gave Jude some Motrin. This seemed to do the trick, and he slept for about an hour. He did great until bed time, and then he started crying again. We finally got him to sleep, and he slept through the night.

I am looking into extra therapy for Jude at "Our Children's House Baylor". I plan on calling them today to see if we can schedule an appointment. I am hoping that goes off smoothly without issues. I know we shouldn't compare our kids, but I do find myself wondering about Jude's abilities. I wonder if any of the disabled children of the moms that read my blog started off with Jude's issues, and still learned how to sit, speak, or eventually walk. My biggest concern is that Jude still cannot keep his head up, but he is trying. He is beginning to lean his head back, and look me directly in the eye with a grin. He is also raring his head back with his mouth open, and presses it on my face with a giggle. I truly believe this is Jude mimicking my kisses to him. He also will finally keep his head straight, and turn towards the person calling him, although it soon falls. I accept Jude no matter how he is, but I am always evaluating our circumstances to see if there is any additional help we can provide him.

Mike and I discussed yesterday how Jude is beginning to get "the look" from others when we are in public. We honestly don't mind at all, but he is beginning to show his disabilities due to getting older. I wonder how people will be when he is in his adaptive stroller. Mike showed me a rather inspiring story from a father the other day regarding his son with CP. His son was deprived on oxygen at birth, and suffered long term disabilities. He did not walk, talk, etc but he could react to his parents, and they insisted on treating him like the rest of their children. They talked with him, sang him his ABC's, etc. One day they got him a unicorn {an adaptive device where you can type on a computer using your head} unsure of what his response would be. To their surprise he typed out "Go Bruins!". It wasn't hi mom, or hi dad, it was letting his parents know he understood what they had been saying, and that he was a sports fan. So maybe there is a lot more going on behind the mask of these disabilities than we think there is. Maybe our children understand more than we have ever given them credit for.

6 comments:

Julia O'C said...

If Jude is trying to accomplish something, he WILL. He will get there. It may take longer than some other children, but with your love and support, he'll find a way. My son works *so* hard to do things that come naturally to other kids. Watching his determination has broken my heart open in ways I didn't think possible. Don't lose hope. Whatever you're being told about Jude's future, don't let anyone destroy your hope.

jocalyn said...

Wish I could answer your question...I feel the same way. The same answer comes up every time though and that's that they do things at their own pace.

Oh, and if you think the looks are bad now, wait til you get the wheelchair!!! Its comical to me now. But for the most part, people don't really notice, I think we are just a little more aware and kind of expecting a look so we look for it. I'm proud of Kendall, and at least when they see her it explains why I always look so frazzled!!!

Sorry we had to miss the birthday party. Looks like you guys had a great time. Here's to the next year full of development! xoxoxo

Katy said...

I only spent a little time with Jude but I definitely felt like those eyes had thought going on behind them.

Anonymous said...

I certainly believe you are receiving Jude kisses. It actually sounds really similar to how Parker kisses us (and all the boys at daycare).
I too have heard about similar stories where it seems like cognitively "normal" people are trapped in a failing body. Who knows where technology will be. There was a program on 60 minutes about a device that is kind of like a hat that will allow people to think and it puts the thoughts on a computer screen. Totally eerie but so cool!!!!

Much love to you all!
Parker & Amy Hendrix

~The~Wacky~Whittons~ said...

JEN!!! I popped on for a few minutes to catch up. Whew girl. I am so tired!!! Please text me or email me or something soon!! We will be in Dallas alot over the next few months and want to get together with you all!!!! I can't believe Jude is one already!! I know it has been a LONG year but you are all so blessed!!!! I will definately give Jude "the look" but my look will be in awe and 100% LOVE!

Candace said...

Jenn,
I know that as parents of special needs children, one of the hardest things is the uncertainty of the future and uncertainty of what our children will be capable of. The truth is no one knows except God. But Jude WILL find his own ways in the world, they may not be regular ways but he WILL find his own! I never used to be able to imagine Faith communicating with us, but she managed ways and has her own ways of showing us what she wants or needs. I think it has alot to do with the delays (waiting for progress) that take sooooooo much longer with special children. That is so agonizing! Have Faith that Jude will overcome many seemingly insurmountable things! God has His hand on him.