LOL, I can actually access the blog today from work and so I am trying to get caught up with what everyone's been up to. Forgive many of my late late (and likely impertinent) comments. Anyway, work's been kicking my butt to the tune of 60 hours a week. Nights, weekends and days. But we're nearing the end of the project so woo hoo!
As for us, Hunter gets his AFO's tomorrow and I'm so totally nervous. Excited that I really think this will help us turn another corner, but nervous none the less. We're doing PT once a week now and after our big appointments we added speech/oral therapy twice a month too and we'll go to OT at least once a month (they'll tell us at our OT appointment tomorrow how often they want him to go). He's stopped sitting but W-sits with the best of them. Still "crawls" in his own cute way. He can pull up but is totally on pointe. Hopefully the AFO's will nip that in the bud. We'll wait until the end of the year to make a call on the botox injections or casting. The neurologist we met with said he thinks Hunter's brain damage is in the basal ganglia and in it's connection to the thalamus. This explains his sleep issues, the motor function and unfortunately what seems to be creeping up as emotional/behavioral issues as well :( We will know more when we do another MRI but we'll wait for awhile so that the picture is better (between 18-24 months old). We have finally started getting some sleep though because we were given the go ahead to give him benadryl and melatonin at night. Doc said she'd give him valium or baclofen if we wanted but I wanted to start small and see if we couldn't make do with OTC. I'm chickening out on the lawsuit but I still think about it a lot. It's not out of the question but I don't know if I can handle it mentally. I need to get settled with it all before I make the final decision. Man, am I long winded today or what?!?
I don't see an update post but I'd love to hear what everyone's kiddos are doing!!! Post em here if you don't mind!! (or we can start a separate thread).
Anyway, I love seeing all these pictures up and I'd like to post some if I get some cute ones. Can anyone tutor me on how to do it? I want to get a picture collage too, I just haven't downloaded any pictures in forever!! I look forward to being able to come on the site more and keep up a little better. Our best to everyone :)
Kristi
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2 comments:
Thanks for the update, Kristi. I'm very intrigued by the area of brain damage that you mention. Malayna also has motor control issues, sleep issues (can't sleep without us) and we're wondering about behavior issues (slapping, pinching, head banging). I'm not sure if it's just frustrated toddler behavior or not. It's great that your neurologist was able to tell you about the area of the brain that affects these things. Our neuro is not so helpful. I think it's important to know what you're dealing with. Thanks for sharing, I'll have to look into this more with regards to Malayna.
Yeah Kristi, I was also impressed that your neuro was so helpful and forthcoming with the right information. Emma also has some of the same issues, and no one ever really go around to telling us what exactly to expect or what her injuries meant other than just hopelessness. I can't wait to hear about how well little Humter starts doing with his AFO's. Let us know.
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