Everyone PLEASE forgive me for my lack of posting.. -Here on the blog, on Twitter, FaceBook, MySpace, etc.. I was M.I.A. for several months.. and for several reasons I guess.. MAINLY b/c Rowan began HATING the computer!  EVERY TIME I’d sit at the computer chair she’d IMMEDIATELY start fussing, b/c she got to that POINT, where she realized that when I’m at the computer, she’s no longer getting 100% of my attention.. But we’ve slowly but surely worked through that THANK GOODNESS! And overall I’d say she’s doing well

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The last time I posted you got to read the AWFUL story of the last seizure Rowan took on January 24th, 2010.  Her seizure lasted over 4 terrifying hours, & the doc’s couldn’t get it stopped after many doses of Ativan, Valium, & Phenobarbitol.. so they had to PURPOSELY overdose her & give her MORE medication than someone her “weight” could handle, then immediately after they Intabated her.. ( which they made her fater & I leave the room for, & her PT told us that the reason they make parents leave the room when they intabate is b/c  is QUITE invasive..) & from standing right outside of the room, it SOUNDED like it that’s a definate.. Then when they finally let us come back into the room her seizure was JUST stopping ( it was a little longer than 4hours, after I saw it hit the 4 hour mark I quit watching the clock.) But THEN they told us that when they intabated, she vomited, letting some of the vomit get into her lungs.. So they needed to start pumping her full of antibiotics as well b/c that can cause a major infection.. And not long after THAT news, the “bloodwork team” came back & said that they found she had a virus called “RSV” in her blood, so these antibiotics needed to be treating the chance of an infection in her lungs, AND this RSVirus.. So like I said in the previous post, she was THEN sent to Children’s Hospital of Pittsburgh where she got better & got pumped full of the medications she needed & her Neurologist decided since her seizure was SO severe & b/c EVERY seizure she takes is fairly severe, that she decided to put her on a DAILIY dose of Phenobarbitol, ALONG with the anti-convulsant she was already on, Keppra.  And I DO believe that the Phenobarb. + Keppra has made ALL the difference b/c she hasn’t had a seizure since!  Also during that hospital stay they found 3 subderal hematomas.. The Neurosurgeon said that unless she hit her head REALLY hard recently (which she had NOT) then the bleeding in her head was PROBABLY caused from her Shunt not being set at the right setting, it was PROBABLY pumping out TOO MUCH CSFluid, which can cause exactally what Rowan had goin on up there in her lil noggin  So NO ONE was able to tell me the REASON for her seizure b/c there were SO many things going on in her body.. from the RSVirus, to the bleeding hematomas, to the fact that her Keppra hadn’t been increased in quite a few months.. so she needed more Keppra PLUS another medication to go along w/ it.. (Such as Phenobarbitol which they DID add [; )

So she gets released from Children’s Hospital, got her Shunt all fixed up, was sent home with new medications, she’s FINALLY getting all better, then BAM! ONE WEEK after she was released from the hospital, she goes to bed & looks JUST FINE, wakes up the next A.M. & has this CRAZY, blood red rash from HEAD2TOE! Was terrifying to even LOOK at! Her dad & I decided to call 911. So back at our local hospital we were ( I think they’re beginning to know us by name there LoL ) & they ran blood work on her AGAIN, & LUCKILY, the RSVirus had cleared up w/ the Antibiotics we’d given her, but she had some OTHER, what they referred to as: “a Common Virus” & the E.R. Dr. compared it to “The Common Cold”, saying that it wasn’t a HUGE deal, but she’d managed to catch this “Common Virus” & it’s WAY of showing itself, instead of sniffles, or a cough, is through this bodily rash. They gave us NOTHING 2go home w/saying that since it was JUST a “common virus” Antibiotics would probably not work – all they wanted was her Primary Care Physician to follow up in 4-5 days. But CONTRARY to what the E.R. Dr. said, it DID NOT start fading or begin going away, ANYTIME SOON. So I was concerned ofcourse, but luckily for lil Rowie, this rash had NO side effects on her – it wasn’t itchy, didn’t burn, she didn’t even know it was there to be honest!  So that was a MAJOR plus. So when we went to see her Primary Care Dr. several days later she was surprised that our local hospital E.R. didn’t give her any medications to help speed the healing process of this rash along, she said that she knew of a steroid med. that should help the rash go away & prescribed it to us.  Sure enough, as the next few days went by I was amazed to see the bright red rash fading to a dark brownish-purple, almost a bruised kind of color, but heck, it still looked a hell of a lot better than it did before!  Her Dr. wanted to see her again after we’d finished all of the steroid medication, so she saw the “brown/purple/bruised color” & said that it should just continue to fade in time.
Guess what? That was in Feburary 2010. It’s NOW late September 2010 & she STILL has these marks left behind from this awful rash!  Approximately 4, maybe 5 mo.ago I was still concerned & took her back to her PCP & showed her how the rash was STILL THERE & asked if she’d write Rowan out a slip to get blood work done again b/c I just COULDN’T believe that a “common rash” was STILL there.  So she sent Rowan for more blood work & said that if the blood work came back all ok that she wanted Rowan to be seen by a team of Dermatologists approximately 2hours away from our home.. Luckily Rowan’s blood work DID come back good, so we got a referral from her PCP to visit the Children’s Hospital of Pittsburgh Dermatology Team in Wexford PA.  They looked at her and said the same thing — that it was just the “left overs” from a Viral Rash & that sometimes these kinds of rashes can take months or even YEARS ( yes, I know! YEARS! ) So they didn’t prescirbe her anything or anything like that, & they didn’t seem overly concerned about it –  they just waned to see her back in October’10 to see if it’s faded anymore,etc. So I’ll DEFINATELY post an update again after our October appointment at the Dermatologist’s office!

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OTHER than all of THAT (lol) Rowan has ALSO gotten her Therapy increased since I last posted! And if you remember correctly, she had QUITE a hectic therapy schedule ANYWAY – so adding Physical Therapy a THIRD time a week just added to the hectic-ness of our lives! HaHa! But I don’t mind AT ALL, b/c ALL of her Therapists, ESPECIALLY her two PT’s care about Rowie’s well being VERY much & want NOTHING but the best for her.  They’ve got her sitting for 1-2 minutes at a time, taking steps in her Gate Trainer / ( basically just a “walker” for handicapped children to learn how to take their 1st steps in) & she LOVES it!

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With her Cerebral Palsy she still has a hard time with the Right side of her body, which is MUCH tighter than the left, but her VERY dedicated Occupational Therapist & Special Instructor have been bandaging up her “good hand” / left hand, during their therapy sessions, which forces her to use her “tight hand” / right hand more & more.  So I’ve seen great results with that as well – she’s using that right hand more than I ever thought she would so LOTS of positives in her life lately & she definately deserves them with all the negative things she’s been through! .. in MY opinion at least (◕‿◕)

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The only OTHER new thing going on I’d have to say is Rowan’s recent trip to the Cerebral Palsy Clinic.  She goes every 6 months & sees a CP Doctor, and the Doctor’s OWN Physical, Speech, & Occupational Therapists.
I had heard of OTHER children w/ CP getting put on medications, or getting Botox injections to help with their “tight muscles”… but it was something that up until THAT day, it’d had never been brought up for Rowan.  So at the end of her evaluation by all of the Therapists, the Doctor comes in and checks out the CP Child, & then makes suggestions, comments, etc. And this time she told me that she’d be getting back in touch w/ me, that she REALLY wants to put Rowan on one of those medications to help loosen her stiff muscles, BUT – only problem is that the most commonly used drugs for Cerebral Palsy ALSO interact with Anti-Convulsants.. Such as Phenobarbitol or Keppra.. Which is ofcourse what Rowan takes.. So she took down the name & # of Rowie’s Neurologist who’s in “charge” of Rowan’s seizures & her seizure medications, & said she wanted to speak with the Neurologist about finding a drug that shouldn’t interact w/ Row’s other medications, but will also do it’s job for her CP.  Three or four days later I came home & had a message on my answering machine that the two Doctors discussed it, & found a drug by the name of ‘ARTANE” – & the chance of it giving Rowan a seizure is VERY VERY low ( not 100% tho..) but also should do the job helping w/ her CP as well.
We’d already had Rowan’s semi-annual checkup with her Neurologist scheduled for 2weeks after that, so I waited so that I could talk to her Neurologist MYSELF & hear the benefits & risks come out of HER mouth.. She said that the way she & the CP Dr. want me to dispense the medication to Rowan ALSO greatly reduces any chance of giving her a seizure.. They had it written for me to give her 1ml. 3X / day for one week. Then the next week it’d be 2ml. 3X/ day, next week 3ml. 3X / day — so on & so fourth.. Then they don’t want me to go any higher than 5ml. 3X / day & if at ANY point her muscles start getting a little to “loose” then STOP at that ml. & go BACK one.  ( HOPING that made sense – it’s one of those things that are rather hard to type, much easier to explain in person lol ) BUT, with me being the wus that I am, I still haven’t started it on her yet.. I posted in OTHER posts & even earlier in THIS post about how awful Rowan’s seizures can be.. I’m just SO scared b/c she’s been doing SO well, NO seizures since January 24, 1010 **knock on wood** ;D  and I just don’t want to mess that up.. But at the same time I feel like I’m HURTING my daughter b/c what if this medication ends up being a REAL break-through for her & helps her begin to walk or something like that?!  Then I’ll feel like a big ‘ol ditzy mom for not starting it on her immediately when I got it filled..

So ANY suggestions out there would be GREATLY appreciated!!  Any of you CP momma’s that also have seizure disorders w/ your children – let me know if YOUR child has ever tried the drug “Artane” & if you’ve had positive or negative effects with it!

And Thank you – ALL of you who have left comments on previous posts & my “Hydrocephalus & Spina Bifida Family” on Twitter who have ALSO been quite supportive, AS WELL AS the Knowledge Safari gals @ www.knowledgesafari.com ↔ they also have been there for me & have given me great suggestions & support.
ALL of you who’ve left comments have been so sweet & helpful. I value all of your friendships & truly mean that.

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LoL – now hopefully since I’m getting my “ME – Computer Time” back I’ll be able to post more often like I used to!  Wish me luck on that!
So wherever you are, & whatever time it is there – whether it be morning, noon, or night  ☾✴☼☁ -Thanks for your time reading this & being here for me during “Rowan Elizabeth’s Developmental Journey”!!

¸.•*¨*♥Ⓛⓞⓥⓔ♥*¨*•.¸  Andrea & family