I just need a moment to vent...
Tonite as I was holding Aiden in my arms, after he had fallen asleep, I had a sudden sense of sadness wash over me. I realized that I only had a few more "normal" nights left like this. Nights of me holding Aiden, bouncing him as I sing silly songs...till he 'decides' the time is right for him to lay in my arms like a little baby as he falls asleep. This thought brought tears to my eyes. From experience, I know that surgery will change Aiden. Not just physically...but emotionally. It will cause him fear and cause him to feel insecure. He will be afraid to fall asleep. Also...I ask myself, will he sleep through the night without nightmares?, how will he sleep without laying on the pins?, how & when will we turn the pins?, will it hurt?, will he be miserable?, how long will is take to feel safe and secure??? Ughhhh...I just want this over with. I try not to let these thoughts enter my mind...but they always seem to find their way in... without warning.
Think good thoughts...think good thoughts...
Aiden was such a cutie today. He continues to amaze me with all he knows and learns...some of it he hides till he wants to dazzle me. Like tonite, while he was eating..I asked him if he was tired, like I always do...and a few seconds later, he put down his toy, and with a smile, he repeatedly did the sign for tired. I was quite shocked! We almost gave up on teaching him that sign because he never seemed to catch on. But little did we know, he's absorbing EVERYTHING and he'll use it when he darned good and ready. He also enjoyed watching his dad playing with Murphy. Although he is still afraid to let the little fuzz ball close to him, he smiled and applauded as Murphy rolled around with his toy and wrestled with papa. It's gonna be a beautiful friendship, once Aiden lets Murphy near him. I had so much fun reading with him tonight, Aiden knows almost every animal by the goofy sounds I make. Poor nurses, he always expects them to know them and they have NO idea what those sounds are.
Well, I feel better already. That's all it takes. I just have to keep the positive and wonderful thoughts in my mind and I have to remember that this surgery is a blessing and it will be over before we know it. And he will bounce back...he always does. He'll be the same happy-go-lucky Luv Muffin I know and love so very VERY much. There is light at the end of the tunnel....
I'm hoping to sleep a little tonight, we are having a Labor Day BBQ tomorrow and I want to join the festivites. No sleeping in for me...I don't want to miss it! I better brush up on my adult conversation skills, but I hear it's like riding a bike. Lord, I hope so! Good Night and thanks for letting me vent...
Good luck with the jaw distraction. Peyton had her first one at a year old. The last two that were scheduled had to be cancelled due to illness but she is due for another one soon. My only advice is to make sure that the doctor is prepared to bring out the big guns for pain control. Peyton got Motrin and Tylenol with codeine - for her that was not nearly enough. Another mom suggested using an ice pack at the pin site prior to turning to numb it - but I read that long after Peyton's jaw distraction so not sure if it works or not. One other suggestion - take before and after pictures - it's pretty amazing what they can do!
ReplyDeleteThanks Tracy! I can use all the advice in the world. Dr. Patel told me to use Motrin an hour before and do it while he sleeps, but that sounds like it's not enough. I was wondering, did her pins dangle like earrings? maybe that will help with the pain-being outside the face further when I turn them. I swear, the surgery part I can get thru...it's the whole pin turning stuff that's got my tummy in knots!
ReplyDeleteYes, that was our advice as well but it did not help - or at least it did not help enough. Peyton was old enough to communicate she was in pain. You can look through the blog postings from 6/2/08 to 6/20/08 to hear a little more detail on that time. Peyton's pin sites were behdind her ears and they pointed up not down. I think you can kind of get a look at them in the pictures during those postings. Once we stopped the turning but before the pins were removed the pain was relieved, however, there is still a lot of pressure from the pins so Peyton wasn't her normal self until the turning had stopped and the pins were removed. It's a seriously stressful time and was more so because we knew every time we turned the pins she was in a lot of pain. Had we been better able to control that I think the experience wouldn't have been so bad. Good luck, let me know if you have other questions. I wrote about the experience in one of the older issues of the Nager Miller newsletters.
ReplyDeleteTracy,
ReplyDeleteFirst off...I started looking at your earlier blogs and I fell in love with Peyton ALL OVER AGAIN! I just wanted to grab her and maul her. So CUUUUTE!
Second off, I'm not sure it's the same device, but I'm not sure how much difference that will make with the pain. I think we will just have to make do with what we are given. And actually, looking at the before and after of the procedure got me more excited, because, Aiden is a spitting image of the early Peyton, and that jaw distraction procedure did SUCH an amazing job. Wish us luck and keep reading my post...I may have questions you can answer! I really appreciate your help and support... :-D
oh...and how the heck did you get Peyton to even let the BAHA hearing band close to her head???? NO luck with Aiden, yet. Perhaps if we got it earlier he may have been less apprehensive...
I think because we started Peyton so early with the BAHA's (about five months) it was not as big of a deal. Actually, she hates to be without them at this point which is a relief - one less thing to fight her on.
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