I had to post a quick update because I have noticed a few encouraging signs in Jude lately. He has been looking in our eyes a lot more, and today he stared into my eyes for almost a minute before darting them away from me. I have been picking him up like a 9 month old lately....expecting him to hold his head up, rather than helping him hold his head up. In return have noticed that he is getting more confident about attempting to hold his head rather than just letting it fall. I know this doesn't work for everyone, but Jude seems to be responding. He also wrapped his legs tight around me today when he felt as if he would fall. I had a tight grasp on him, but sometimes his head tilts to the back, and that can make him feel unsteady. I had a flashback to when Emily was a baby, and how she would squeeze her legs tight around my waist.
Tonight when I held Jude close looking deep into his eyes I started to cry. I wondered if there was hope that he will communicate, walk, and eat normally. I have faith, I do! I hope, and I finally let myself hope.... when before I just accepted that fate held a definitive answer of "no" for us. I believe in my little boy, and we are working with him. In fact, my darling girl put together "level" cards of Jude. She has been working with him every night after we work with him. He gets a kick out of hearing her voice, and honestly responds to her. She says "Bend Jude", and he will bend his leg. She says "Put it back Jude", and his little leg goes back. It sounds to good to be true, but I have it on video, and will be posting it soon. Maybe it's the repetition, maybe it's wishful thinking, but regardless it makes this mama happy for a few seconds. It makes me breathe a little easier, and it makes me restore my faith a little more.
My Jude! He may not be what everyone considers normal, but he is my little miracle, and will continue to be. I am a little emotional tonight, but I guess that just happens sometimes.
9 comments:
I have followed your blog for a few months now and I don't think that I have commented yet. Your kids are adorable and I can just feel the love you have for them through your writing. I can't imagine what it would be like not knowing the fate of your baby as he gets older. I guess none of us do but at different levels. (if that makes much sense) Anyways.. I'm looking forward to reading more!
I know what you mean about being so tired you can't sleep. I still haven't caught up from being up til 4:00 in the morning on Saturday/Sunday but last night I struggled to sleep, ugh!
I love the signs of growth Jude is showing. Awesome.
Jude is getting there!! I am so excited!
It must be so hard not knowing what the future holds. The blessing you have with that I guess is getting joy out of the little accomplishments he is showing that are big milestones for him. I hope you can get some sleep!
Girl--he's gotta start somewhere and no matter if it's the repetition or what, he understands that that's the game and that's wonderful. You're really seeing his cognition now that he's not constantly seizing.
I'm going to e-mail you about a few things so be on the look out!
My capcha code is demeness--do you think they're trying to tell me something?
haaaaaaaaa Bird! One day I got Virggin, No joke. Um I have children
So glad to hear that Jude is responding. It's like he's been locked-in, with the seizures. Now, he's like a bud starting to bloom! Bloom Jude Bloom !!
i am so happy to see jude progressing. AWESOME!!!!!!!!!!!
Go Jude, GO!!!
Parker & Amy Hendrix
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