OT yesterday.....fun times ahead!

So, Julia got to see Kevin yesterday, her favorite OT. We worked on her taking off her shirt and getting it back on "by herself". Once you help her with one arm, she can generally do it - but it takes her about 5 minutes and there lots of crying and frustration involved. Kevin is really happy with Julia's progress with more "planning" rather than random spreading of toys and little organization of her thoughts like she had a year ago. She's not perfect, by any means, but he said he can see her really "trying" to take things a step at a time. Her left hand and arm are still causing her difficulty. I mentioned that Dr Gallagher mentioned "restraint therapy", which we tried last year with a removable cast for her right hand, which was supposed to force her to use her left hand.....and it did - it forced her to use her hand to remove the removable cast.....SO.....

We talked about casting Julia's right hand and arm with a REAL nonremovable cast. The cast would stay on for about three weeks at a time and we would work on OT stuff pretty intensely for that period of time - two sessions a week. (Here is where I need a body double, or not to work full time). He said it will be extremely frustrating for Julia which means for us at home as well - as the crying will be pretty constant....BUT that he has seen some amazing results when this is done. So, he is going to talk to Juliette, her PT, and decide when we should do this....right now, the botox that was done on Julia's leg should be kicking in pretty good - so we should probably concentrate on PT for now, and then move on to the cast and OT later. Kevin is so awesome with Julia. He looked at me and said she is one of his favorite patients, because she is always so happy to be there (most of the kids are not), and that she makes him smile and remember why he went into this field. He said regardless of how far she comes, she is happy, and he said that says a lot about her life at home and outside the clinic. He said thank you for keeping her happy and not "working her to death" like many parents sometimes do - that we seem to have a real good balance with working with her and letting her be.....letting her be a kid, and letting her be herself, regardless of her diagnosis. Kevin is so awesome.


Will keep you all posted on her next steps - hopefully her new brace for her leg will be in next week.
Susan

HOW EXCITING!

Julia got accepted by the Littlest Heroes Project to get some professional pictures taken of her free of charge! The volunteer professional photographer emailed me this morning and we are going to try to set something up at Saddle Up - Julia's favorite place to go, and get some good pics with her and the horses. HOW EXCITING! I used to take the kids every year for pictures, but with time and finances now limited, I don't do it anymore....I am SO EXCITED FOR HER!! I'm hoping she will let me do something with her hair so its not in her pretty face for the pics. Will post the pics when I get them (with photographer's permission.....). THANK YOU LITTLEST HEROES PROJECT!

article on encephalitis......copy and paste....

http://www.cbc.ca/canada/story/2010/04/01/f-encephalitis-research-nervous-system.html

New Pediatrician

Well, i found the ped of my dreams (i think)............i took jack in for his 7 yr check up. Jack is fine - other than some problems with peeing in his pants still - which the dr thinks may be stress induced as they only occur about 3 times a year for about a week.....i thought it was odd that he was only in the 38% in height since his dad is so tall, but he said not to worry. If he doesn't start "sprouting" in height, we will look into it, but he wasn't concerned. He found some issues with his knees, but nothing to worry too much about for now. Likely an inhereted issue that we can't do much about and it isn't bothering him for now. He was able to remove the tube in Jack's ear that has been lingering for 5 years - the last ped wanted me to go to a specialist to get it removed - he got it out in two minutes. Jack (and the new doc) passed his exam with flying colors.

I then mentioned Julia to him, as I have not been that impressed with her former ped. He agreed with the vaccine as the cause of her encephalitis and told me his special interest was developmental delays and wanted her records right away! He attends classes on delays, he is familiar with brain injuries, AND he is familiar with coding, etc, for things with medicaid.

When we left, I got a call on my cell from him, which I missed because i couldn't find my phone, and he said he was leaving the office but wanted me to call him back on HIS CELL PHONE and gave me his number, regarding jack and some meds that might help with his peeing in his pants way to often.

Anyway, very excited about a ped who cares and gets it. He said, "i can understand, to the best ability that I can, what you are going through with julia, but you are the one living it, and i hope i can help you out."

What a great doc! Hard to find these days!

Susan

Another appointment under our belt!

This afternoon we had yet another refitting for Julia's brace for her left leg.......I think this will be her 7th brace or so since the vaccine injury three years ago....

Anyway, after getting out of work late (really??? how unusual....) I was able to get to the appt early! Julia was a TROOPER this time! Its the first time she actually just sat through the whole casting (well, on my lap) without moving and crying, etc.... She was casted and measured and the new brace should be in within the next three weeks! Good news, it will be a "short" brace, as opposed to the one that went up to her knee that she has had for the last year or so....AND.......NORMAL shoes will (should) fit over it! WOO HOO! Maybe my baby can become a shoe fanatic like her mom! Hopefully shoe shopping will be more fun this time! I would really LOVE for her to be able to wear sandles now and then, especially with summer coming.....

Anyway, I'm real happy with how the appt went.....NO TEARS or accidental cuts on her skin like last time!

susan

Success!

Botox and valium at four years old - who would of thunk it....

Everything went fine today - other than I overslept and had 15 minutes to drive to aurora in rush hour! Thankfully, there was little traffice and I was only 15 minutes late....also thankfully, my mother made it on time and let them know I was running behind so they wouldn't cancel her appointment!

The general anesthesia only took about 7 minutes total, and she was up and moving like herself within 45 mintues.....she's a little crankier than normal today, but all in all, pretty much herself!

Now, just the three week wait to see what response we get! I hope it helps some! (A lot). But the doc said not to get too excited too soon - she used very low doses today and it may need to be redone with higher doses depending on how she responds......

Anyway, all in all it went well. Hoping for an early bath and bedtime for all. Stressful day, but all went great!

Susan