Wednesday, December 15, 2010


Gav's MRI results came back today.... 100% normal. I was so relieved at first, but not I'm just confused. If there is nothing wrong with him neurologically, what is causing him to be weaker (stiffer) on one side of his body? Why is he so hypertonic? Why does he have a sensory processing issue? I asked the nurse all of these questions, only to have her tell me that the doctor will be in touch... Fabulous. That will probably only take 500 years. In the meantime, I've made an appointment with a Developmental Pediatrician at the Melmed center. I'm hoping for some answers. I think I get more frustrated with Gavin's issues than Grace's because I have no way of understanding the problems, as they're not defined or explained. With Grace, it's fairly cut and dry. She has TOF, therefore she... etc, etc, etc. With Gav, it's he has nothing, yet these are all the bizarre things he does. No, I don't know why, that's why I'm here... UGH!

Respite is the BEST invention ever. Seriously. Today, I made 5 batches of cookies, all while Jess, our respite provider, read and played with the kids. Friday, she comes again, and I'll have all afternoon to nap, or clean, or even go out for a massage. I get approximately 72 hours per month, per kiddo, so... I have lots of relaxation coming my way. Woo-hoo! I feel guilty, but I am in such need of this, so I'll accept it and be thankful.

Tomorrow is another busy day for the kids. Gav is scheduled to have his EE biopsy, but since he's become super congested (and coughing), I think I may reschedule. Grace is scheduled for her bladder/kidney ultrasound. She had a UTI, and apparently it's unusual for kids her age. I'm wondering if other preemies have similar issues? I've noticed that she doesn't have the "inner protection" that other full-term girls have. I'm trying not to get too graphic here.... LOL!

I'm completely obsessed with the Glee soundtrack. It's somewhat disgusting. All of my ringtones are now songs that have either been on Glee, or are sung by Glee cast members. My favorites? F*&k You by Cee Lo Green; Marry You by Bruno Mars; Valerie by Amy Winehouse... the list goes on and on....

Random thoughts :)

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1 comment:

  1. Have just spent a little time reading about your very special children! You are an amazing Mommy!! I must say I am jealous of your Respite care! Utah's respite care is almost impossible to qualify for :( and the waitling list is about 3 years long!!! Sometime we should chat or e-mail about your Ethan, because his delays (and ear infections etc..)sound very very similar to my 5 year old Ammon. Sorry to say, he's never been officialy diagnosed with any kind of "title" but he continues to progress and is doing great. So glad to hear your Grace is doing well :)

    Happy New Year!!

    Miracle Mason's Mommy