After 5 months of waiting Rowie FINALLY got a LONG awaited Occupational Therapist again!!

She had one before we moved back in July, then when her Therapies started back up in August & September ’09, our NEW county didn’t have an available Occupational Therapist for her.  So she got put on several OT’s “waiting lists” & I got the word about 2-3 weeks ago that we would FINALLY be getting one starting last week on Mondays!  So I can say “SEE YA LATER” to our free Mondays ( Monday was the one day that we had zero therapists – kind of like, Rowie’s day off LoL ) BUT, she REALLY needed an OT so I can’t complain, and after all, all therapists are here to HELP my lil girl

She came over for the 1st time 1 week ago today – since todays Martin Luther King Day she was off, but she DID come last Monday & she seems very nice, we did mostly just talking about common goals we’d both like to see for Rowan, etc.

So we were happy about that and then on Tuesday, Rowan’s newer Physical Therapist, Shari, announced that she thinks Rowan’s head stregnth is good enough now that she’s ready to try an actual “Walker”!!
And NO I’m not taking about your average ‘baby walker’ that you can buy at WalMart that you stick your baby in and they kind of sit and push themselves around with their feet – this is different. She showed me a child using one several weeks ago on a YouTube video, & it LOOKS to be MORE like a walker that you would see an Elderly person using, EXCEPT her hands/arms would be strapped on so she couldn’t let go & fall & somehow her waist area would also be strapped to help her hold herself up.  She would ALSO wear her DAFO’s ( her “special made” shoes that go up just a TAD past her ankle & keep her feet straight. ( Rowan’s feet ALWAYS turn inwards or one will want to be on top of the other, but when her DAFO’s are on, this problem is eliminated & she can stand “regularly” WITH support still ofcourse ) but hopefully if this walker that Shari is bringing over for us to temporarily borrow tomorrow then Rowan would be able to stand on her own!!! She would be SO happy! She wants to stand, walk, and crawl SOO badly, she’s SO determined you can see it in her eyes during therapy sessions.
HOPEFULLY I’ll get a chance to post again either tomorrow or later in the week AFTER we’ve gotten to try the walker so I can better explain it!  All I can say for now is that I’m SUPER excited!!

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MORE good news came last week when I got my FIRST email from someone in my area that has Hydrocephalus & was interested in joining the “SouthWestern Pa Hydro Support Group” !!
I told her how I’m working on getting people interested via flyers, the blog-site, a page on FaceBook for our group, etc. But that SHE was the 1st to actually contact me with interest.  I told her I have one other in our area who is interested, but I wanted to at least have 5-7 people (including me) that I KNOW are going to show up to our 1st “official” meeting before I go making plans for it, & that my original plan was to take these “holiday” / Winter months & FIND people like her that are interested, then having our 1st meeting late Winter ░☃░ , early Spring ✿Ƹ̵̡Ӝ̵̨̄Ʒ ❀. 
So that’s still the plan & I’m hoping it works out for me AND the others!! Wish us luck! ☝

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ALSO last week Rowan got to have her “6 month check-up” with her Neurologist.  I REALLY REALLY like her Neurologist, she’s been there since Rowie was 5mo. old, always answers my questions honestly & always makes sure Rowan doesn’t run out of refills on her seizure medication, Keppra. The only thing I DON’T care for is the fact that she (AND the other Neurologists at Children’s Hospital of Pittsburgh) are NOT being proactive with Rowan’s seizures..
After Rowie had her first 3-4 seizures her father & I were like, hey – why don’t we increase her Keppra dose BEFORE she takes a seizure, instead of waiting for the seizure to come AND THEN increasing her dose… It had pretty-much come down to a science at that time, Rowan was taking seizures every month & 1/2 to 3 months.  She NEVER went longer than 3 mo. without one..
UNTIL, her last one that was on August 1st 2009.  And when Rowie took that seizure ( I wanna say it was # 7 or 8 …) her Neurologist said, OK – Lets get proactive, I wanna check in with you every 3 months, & SEE Rowan every 6 months, and when she gains a couple of pounds, we know it’s time to raise her dose.  Jeremy & I were SO happy & SO relieved that they FINALLY took our advice to get proactive, b/c keep in mind, ANY seizure is hard to watch a loved one go through, but Rowan’s SHORTEST seizure was 47 minutes!! Longest seizure at approx. 3 hours!!  So her seizures ain’t nothing to play around with, know what I mean?!
Well, there was a little problem with Rowan’s weight gain ( which I believe I mentioned in earlier posts ) How Rowie was STUCK at 21 lbs. for around 7 months or so.. All up until the past month & 1/2 to 2 months she JUST RECENTLY began gaining weight again after getting the “ok” from her Primary care Physician to begin drinking a can of Pedia Sure daily. INSTANTLY Rowan began gaining weight again. She’s been on it about a month & 1/2 now & ALREADY went from 21 lbs. to 23.9 lbs. !!  I’m SO SO happy that she’s gaining weight again, but at the same time it worried me b/c I thought, uh oh, what if she outgrows her Keppra dose again & takes a seizure?!  So THESE were my questions for the Neurologist last Friday.
We’ve had our LONGEST period of time in Rowan’s ENTIRE LIFE now that she’s been seizure-free ( Thank God ) It’s been ALMOST 6 months. HOWEVER, keep in mind, 4 of those months she was at a stand-still weight of 21 lbs. So I thought FOR SURE that the Neurologist would raise her dose whenever I told her how quickly she’s gaining weight now that she drinks a can of pedia sure daily, but no. I was wrong.  She was SO proud of Rowan & the things she’s accomplished since the last time they met ( which was August 1st <- last seizure ) She (the Neurologist) was SO happy to see that with the brain damage Rowie has that she’s been able to learn how to wave “Hi” & “Bye” to people, can show you where her Hair is, can show you where her Feet are, can show you where her Nose is, etc.  BUT, when it came to Rowan’s anti-convulsant she said that in order for her to increase Rowan’s medication, she’d have to get to 29 lbs. ( OR take a seizure ofcourse..) <– She didn’t say THAT part out loud ofcourse, but thats how it’s always been.. Row takes a seizure, they increase her medication, so on & so fourth.. *ugh* Frustrating for ME, ESPECIALLY when I SPECIFICALLY remember her saying how she wanted to have little “check in’s” with Rowan to monitor her weight gain to change her dose accordingly, unfortunately at that time though, Rowan wasn’t gaining any weight.. But NOW she IS, so wthell?

Sorry for my little temper tantrum, LoL   It’s just scary & frustrating b/c her daddy & I worry about it CONSTANTLY.  Not like we don’t have enough OTHER things to worry about with her Cerebral Palsy, Hydrocephalus & VP Shunt.  Not to mention Rowan DOES have an older brother that I worry about  & gets taken care of as well.   So I guess all I can say is keep us, especially lil Rowie in all of your prayers..  Hopefully with the help of prayer she WILL outgrow her seizures.

and all THAT is what’s been going on here in OUR lil world   ☼

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I know I need to get BACK to updating Rowie’s blog here more often – My original plan was to write every other day, but then I was running out of things to write so I thought I’d update weekly on all of her Therapies for the week AND any Dr. appointments if there were any.  And that still really is what I’d LIKE to do, but I guess sometimes what you WANT to do & what your ABLE to do are 2 different things!   We’ve just been super busy, but hopefully I can get back in my internet “groove”!!  (◕‿◕)  So wish me luck on that too!!

Can’t wait to update ya on how her “Walking” goes tomorrow with her Physical Therapist !!  ..be watching for the update!  ☄

✧HOPE✧ - may you find comfort in knowing that when you have faith you have hope and when you have hope you have everything..

Thank you for reading and I hope to have more exciting updates comming soon!!
mⒶղΨ ⒷⓁⒺⓈⓈⒾⓃⒼⓈ mҰ  ℓﻉﻻ٥s !!