Rowan's Developmental Journey
Rowan Elizabeth's Daily Journey — Thanks to GabrielsLife.org & WordPress.comSupport the Hydrocephalus Association with us!!
Thanks to my great friend Tina for posting this on FaceBook for me to find!!
“Vivint is giving away 1.25 million dollars to charities- and the HA is in the top 20!!
This is good- because after June 11th, the top 20 will move on to a new phase- and the rest of the charities are out of the running!
So please, take a second and endorse the HA. 
It’s a great organization and could really use the money.”
I’ve missed blogging!!
Well everyone, it’s no secret that it’s been quite some time since I’ve been on here to blog.. Unfortunately Rowie is at the age now where she HATES me to sit at the computer desk because that means “Mommy isn’t paying 100% of her attention to me?!?” LoL –Sooo, I’ve been rather M.I.A. from my blog, facebook, twitter, email, etc. However out of ALL of the computer things listed above, this blog is the absolute most near & dear to my heart. Earlier today I went back & read posts from SO long ago! Things that I’d forgotten I’d been through & typed for all to read! 
So I REALLY want to get back into this & continue to share the story of the little amazing babygirl named Rowan Elizabeth with Hydrocephalus, CP, & Epilepsy from Pennsylvania.
But where to begin?! Well, it’s May 21st 2011 today – my last post was back in 2010 so theres A LOT of catching up to do! 
Rowan turned 3years old on April Fools Day (2011) & in turning 3years, in the state of PA children get moved from the “Early Intervention Program” of “Therapy” to what’s called “The Intermediate Unit”.. But as I’ve come to realize these past few weeks there are A LOT of differences between the 2 programs… Where Early Intervention was more focused on “Health-Based Therapy”, the Intermediate Unit is more “Learning-Based Therapy”.. Not an easy thing for me to put into words right now, & not saying it’s better or worse in any way.. just different…
The last time I would have posted Rowan’s speech would have been VERY limited.. I believe back then the extent of her speech was “Da Da” , etc. VERY baby-ish talk.. & Don’t get me wrong, she’s STILL speaking quite “baby-ish”, don’t forget she has an EXTREME amount of brain damage! BUT – she can now say “Daddy”, “Mommy”, “Anthony” <–her big brother!, “I love ya!”, “Yeah”, “Hey” & “No”. The “I love ya” is EXTREMELY recent, like, 3-4 days ago she kept kicking her brother while he was down on the floor playing a video game, & she’s kicking him & saying “Hey! Hey!” & when he’d look at her she’d say “I LOVE YA!” OMGoodness! SOOO freakin cute! BUT, so far the ONLY person she’ll say it to IS her brother! LoL I think she KNOWS how badly I want her to say it to me so she’s kind of… messing with me in a way maybe! Doesn’t change the fact that she can say it now, CLEAR as can be, & conciously knows WHO she’s saying it to. Do you know what I mean?
So THAT’S definately a great and positive update!
UNFORTUNATELY she is awaking from her nap now so I’m going to tend to her & hopefully either tonight when she gets to bed or during TOMORROW’S nap I’ll get to ADD ON to this for a nice, long, updated post!!
Thank you all for your kind comments, emails, tweets, (etc.) & for not forgetting about my family & I during my lil period of “computer down time” that I was sort-of, FORCED to take! LoL ! I love all of you & hope to blog AT LEAST 3X a week from now on like I used to!! Wish me luck!
Don’t forget what September is!!
I can’t believe I didn’t mention it in my last MEGA post ( sorry bout that everyone! I know that was A LOT to take in & read! ) BUT – September is OUR month – we made it happen & welcome to September – 2nd annual National Hydrocephalus Awareness Month!
Not forgetting that October also became National Spina Bifida Awareness Month also!
Just a lil FYI for anyone & everyone who didn’t already know about why I ♥ ℓﻉﻻ٥ the month of September!!
xoxx –Andrea
Where do I begin..?
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
☁ OH, when it rains, it pours.. ☂
I apologize for the “lack of blogging” lately.. Our lives have been probably the most hectic since way back when Rowie was a newborn & recovering from her two brain surgeries!
It ALL started the night of January 24th – It was a Sunday, and as a lot of you know Sunday evenings from 6pm to 8pm I go bowling RIGHT down the road from my house & have bowled there my ENTIRE life
Well it was approximately 8:30pm when I got home that Sunday nite, and Jeremy (Rowie’s daddy) said that she was acting REALLY tired, that we needed to quickly get her medication & a sippy of milk ready for her.
So I think I held her for maybe 10 minutes then handed her back to her dad so I could draw up her anti-seizure medication, & get that night-time “routine stuff” done.
As SOON as I picked up the syringe to draw up her meds Jeremy said “Oh NO Andrea – she just started seizing, call 911!” I ran in the living room from the kitchen & saw her in his arms doing JUST that, her eyes had locked to the side, and her arms & legs were jumping in rhythm w/ eachother.. I grab the phone – I call 911 – while I’m on the phone w/ 911 I’m trying to pack a diaper bag along with a ‘mommy & daddy bag” b/c ALL of Rowan’s seizures land us over an hour away at Pittsburgh Children’s Hospital after our LOCAL Hospital gets her stable enough to either go by ambulance or helicopter, whatever the situation may be..
But the REASON we always end up at Children’s Hospital in Pittsburgh is b/c of her OTHER health problems.. #1 they like her to have head CT Scans done, along with occassional EEG’s & it’s all just to check & make sure the reason for the seizure ISN’T a “Shunt Malfunction”. As I’m SURE I’ve posted in other posts she has a VP Shunt in her head with a tiny pump that pumps out the extra CSF / fluid that she has on/around the brain, and attached to this pump is a tiny tube & the tube runs clear down through her neck, overtop of her breast-bone & ribs (yet still under the skin ofcourse) , down to her “abdomen area” where the fluid is released & absorbed back into the body. Only problem with these shunts are, they fail. In SOME cases quite often. I have a DEAR friend who I met via twitter, her name is Jenn & she is in her early 20′s & has had I wanna say 87 or 88 surgeries since she was ten years old!! Everyone with a shunt is different obviously, and there are all different kinds of shunts for different people, but I’ll NEVER forget the day Rowan’s Neurosurgeon put in HER shunt I asked him how long I could expect this shunt to last APPROXIMATELY, and he said “consider yourselves VERY lucky if it lasts five years..” *deep sigh* So I remember Praying at that moment that Rowan ends up being the EXCEPTION to the rule, that maybe we’ll get lucky & she won’t have to have dangerous brain surgery EVERY FIVE YEARS for the rest of her life! As I *knock on wood* LUCKILY, Rowan HASN’T had to have any revisions or replacements or many problems AT ALL with her shunt to date & that makes her a lucky gal – but I guess I made a short story into a very long one LoL because BASICALLY the only point I wanted to get across right now is that EVERY TIME she takes a seizure, or gets very ill she gets sent to Children’s Hospital in Pittsburgh for her Neurologists & Neurosurgeons to make sure that shunt isn’t malfunctioning b/c SIGNS of shunt malfunction ARE: Seizures & vomiting, etc.
SO SORRY TO CUT SHORT FOR NOW BUT BELIEVE ME – THIS IS ONLY THE BEGINNING OF A VERY LONG STORY THAT BEGAN THAT NIGHT OF JAN.24TH BUT DIDNT END UNTIL MARCH 5TH!!!
I will post more soon – hopefully tomorrow being Monday, March 15th 
If not, DEFINATELY there will be more to come by Tuesday!!
Lotsa luv XOXO + Andrea, Rowie, & family
♦ After 5 months of waiting!(◕‿◕) ♦
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 !!
ღ2nd Post of 2010! [^‿^]
Sorry I had to cut that last one short! I wasn’t paying attention to the time. We’ve been having AWFUL snow here the past several weeks, my one night out (Sunday evenings from approx. 545pm – 815pm) but the bowling alley is MAYBE 1 mile down the road & it was an obstacle driving there last night! THATS how bad the roads have been! & not to mention I’m a TOTAL “scardey-cat” driving in the snow b/c of a bad accident Anthony and I were in back in the winter of either ’04 or ’05.. I WANNA say 2005 but not sure… EITHER way – I just get extreme anxiety when I have to drive in the snow, & theres been MORE than enough lately..
ANYWAY — I got a good phone call today! Rowan’s NEWEST Therapist, ( I don’t want to write her name wrong, she said it quickly! But it was either Carrie or Kiley) <<- SOMETHING like that!! But she’s Rowie’s new OT / Occupational Therapist!! Rowan had an OT back when she 1st began getting therapies, she had JUST OT & PT, but when we moved this past July, only the Physical Therapist was willing to make the “drive” to our new home & we’ve been without an OT up until NOW!! She’ll be comming on Monday’s at 2pm. Monday WAS our only day OFF of having NO therapists, but UNFORTUNATELY, last week I got some rather sad news, I spoke often in previous posts of “Paula, Rowans Speech&Feeding Therapist”. She had to take several weeks off mid-December due to a knee or ankle surgery she was having.. well last week when the Special Instructor Jen was here I asked when Paula would be returning back to work with Rowan again b/c it’s been quite a while now, (I asked Jen b/c she and Paula work for the same medical provider) Like, ALL of Rowan’s Therapists are from the “Early Intervention Program” But they don’t all necessarily work “together”.. for example our OLD Occupational Therapist Erin, & Kelly, our Physical Therapist that comes over on Thursdays, THEY were both from the same business. And now Shari, Rowan’s PT that comes over on Tuesdays comes from the same place that our newest addition Occupational Thearpist that will be comming on Mondays.. WELL Jen & Paula worked for the same “company” <- for lack of a better word off the top of my head! SO – BACK TO MY STORY When I asked Jen about Paula, her face kind of dropped & she said that unfortunately several days after her knee / ankle surgery she suffered a Stroke.. Only 42 years old & doesn’t smoke, doesn’t drink, seemed like a VERY healthy lady, & NICE as can be.. As life would have it she didn’t suffer much brain damage or anything like THAT from the stroke, the only problem she seems to be having is that SHE now has her OWN Speech Therapist… I guess after the stroke her speech has some problems.. What KIND of problems? I dunno.. All that was told to me was that they weren’t sure if she would be comming back to work since she’s a Speech Therapist & if she doesn’t feel confident in her OWN speech, then who knows..? So I’m not sure if I should call my Early Intervention worker & get a NEW Speech Therapist or just wait to see if Paula returns.. But my heart TRUELY goes out to Paula & her family ‘n friends. She’s SUCH a sweet woman. I hope she recovers quickly. ღ
So Paula’s day was Friday. Now with adding the new OT on Monday’s I guess FOR NOW at least, Fridays will be Rowie’s “off day” …
and I guess I should clarify.. maybe some things I say people don’t fully understand WHY b/c they don’t know Rowan’s “full story” or..”diagnosis”..maybe? For example, after my previous post, a girlfriend of mine who ALSO suffers from Hydro, Tina, commented and asked WHY were we un-sure if Rowie would ever be able to talk.
And I don’t really have an answer for that or ANYTHING, juts b/c, when I was pregnant with Rowie, and the doctors discovered her Hydro via ultrasound – they thought that she had SOOO much pressure built up in there that it had damaged ONE HUNDRED PERCENT of her brain tissue.
After futher tests (more ultrasounds & a belly MRI on me) they found that NOT ALL of her brain tissue in there was damaged.. a large amount was definately damaged, but not all. So NATURALLY Jeremy and I asked every other minute “What should we expect?! What should we expect from our baby?!?!” & NO Dr. could answer our question. They ALL said that in cases like ours, only time will tell..
Then she was born and had her 1st brain surgery at 3 days old & 2nd brain surgery at 14 days old, and we asked the Neurologists & Neurosurgeons following her at THAT time AGAIN “What should we expect from our baby?!” and STILL got the SAME answer. At 5 months when she took her 1st seizure and it lasted 3 hours, we asked MORE & MORE questions.. STILL zero answers.. Then at 6months when she got diagnosed with CP — MORE questions, NO answers.
We’ve been told the SAME thing from day 1 up until the present time — that only time will tell with Rowan. Only TIME will show WHAT parts of the brain have been permanently damaged, and what parts of the brain have been NOT permanently damaged, and what parts of the brain have been not damaged at all..
Maybe 10 posts down ( or something like that!! ) I posted about when Children’s Hospital of Pittsburgh sent us computer disk copies of Rowan’s most recent head ct scans (at THAT time, they were from August1st’09 <- which is the date of her last seizure)
But we asked if we brought them in a disk if they’d make a copy for us to take a look at here at home, and they said yes, but we didn’t even get the chance to get a disk to them & they’d mailed 1 to us!! VERY nice of them ANYWAY — I’m looking at this disk of 40 pictures of Rowie’s brain & it looks like Japaneese to me — I had NO CLUE wthell I was looking at.. I thought that it would be just like reading an ultrasound (one of the ultrasound techs kinda showed us the “basics” of looking at an ultrasound of Rowie’s brain when she was a newborn) But this CT Scan was TOTALLY different!! So I’m asking EVERYONE I know if they have even a CLUE of how to look at a head CT scan..FINALLY, Shari, who is Rowan’s ”newer” Physical Therapist worked at 2 different hospitals before IN the “Pediatric Neurology units” ! So she was QUITE familiar in HOW to read the CT scan of a child’s head.
So she & I sat down after one of Rowan’s PT sessions & she showed me EXACTALLY what all 40 shots/pics of her head were “of” & the most “important” ones to look at, and what to look FOR, etc.
When all was said ‘n done she looked at me with all honesty & said “If I looked at this set of scans & didn’t know that they belonged to Rowan, I would guess that this child had MAJOR learning delays, physical delays, mental delays, The works.. Rowan is a TRUE miracle & the things that she can do with THIS much dead brain tissue is nothing short of amazing.
That was just a few months ago, so it was kind of a “reality check” of just HOW blessed we are to have Rowan & to be able to watch her learn the things she’s been learning over the past several weeks makes me SO SO proud of her. She had / HAS all odds against her & is doin pretty darn good ( in my opinion at least! )
So THATS why sometimes here & there I’ll make a comment about how I’m not sure if she’ll do “this” or if she’ll do “that” — it’s all simply because of how theese Doctors have my brain trained, after all of this time ALL I’ve been told is “only time will tell” when it comes to EVERY aspect of Rowan’s life to come.
So thats all for now, Rowan had Physical Therapy today and Special Instruction. We ALSO got her all set up with her NEWEST Therapist on Monday, her Occupational Therapist. So I hope to get another post in either later today or, 1st thing tomorrow.. but as EVERYONE knows, you NEVER know if things will go as planned!
Thanks for reading & best wishes to everyone!
Happy 2010!
ⒷⓁⒺⓈⓈⒾⓃⒼⓈ ⒶⓃⒹ ⒸⒽⒺⒺⓇ
Andrea & Rowie ღ
☆Our 1st post of 2010!☆ *partONE
Well Rowan’s 2nd Christmas went VERY well, it was a VERY nice day! On Christmas Eve a little family came over & I made some brownies & coffee, we let Anthony open 3 of his gifts, because he gets absolutely SPOILED at Christmas time because he has A LOT of family – he has Jeremy & I – My Parents – My Grandparents – My Aunts & Uncles, THEN HIS DADS side of the family.. So we figured 3 gifts to “make” his evening wouldn’t be any harm So it was really nice.
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Christmas Morning Rowie and I woke up & I showed her all of the presents under the tree, and put her in her seat where she can sit up and see, and she did surprisingly well at ripping open wrapping paper! The 1st two gifts she opened she got kind of “overwhelmed” she wanted to hold & play with both of them & was just going INSANE! In a good & cute way though (◕‿◕) So we took a little time & just played with those couple toys for about 45minutes, b/c I didn’t want to REALLY overwhelm her & her have a “not so good” idea of Christmas ya know? So by that time Jeremy had woken up & watched her and I open presents (Anthony had spent the night down at my parents several houses down the street where we met up with them all around 11am) So after we got done opening all of the gifts, we got cleaned up & ready to go down to my parents where Anthony was, and also my dads mother(my grandmother). So Rowan had several more gifts to open up down there, and then at 2pm we went up a block away to my Aunt & Uncles house where we met up with my Mom’s parents (my OTHER Grandparents) and their daughter(my cousin) & her husband, so Rowan had MORE gifts to open! She got some really cute outfits from them, so not ALL toys, some really cute clothes as well
But I think I can HONESTLY say, out of all of the toys that she DID get, it being a week later now, there is NOT EVEN ONE toy that she DOESN’T play with!! She loves them ALL!
There’s her toybox back in her bedroom (ofcourse) – then out in the living room I keep a big basket of her “most played with toys”, and ALL of her Christmas toys are in the basket! She’s been having a ball!
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The week of New Years / this past week – she had several therapists come out, she had Kelly (Physical Therapist) on Monday where they did some stretching, crawling, sitting, standing, etc. NO, we didn’t break any “records” but she’s still been having AWESOME PT sessions since we’ve had the two different PT’s. Made a lot more progress lately than ever. So thats great! NORMALLY on Tuesday she would have had her OTHER PhysicalTherapist, Shari – but she’s out for several weeks due to a wrist surgery. Wednesday we had Bill the Vision Therapist (AND the only person in the world that she’ll keep her glasses on for! ) So she had a nice session with him, and he always uses her toys to do “eye tracking” with, so he had a TON of new toys to use! & she did very well Later Wednesday she had her Developmental Specialist Jen come over, Jen is kind of like a “baby teacher”.. she’s been trying to teach Rowan how to speak, and some basic “sign language” JUST INCASE she ends up not being able to speak… we just DON’T KNOW yet..? It’s sad, I get teary eyed ☁♒ when I think about it, but it’s a reality I have to face.. the “just incases” of HOW Rowie’s life could possibly turn out.. SO, we DO work on basic Signing with her – we’ve shown her Mommy, Daddy, hungry, Thank you, more, play, stop, etc.. ya know, the basics.
Although she’s been making MAJOR “learning” progress w/ just Jeremy & I showing her things like “waving hello & goodbye” & “showing us where her hair is”, “showing us where her hands & feet are”. I’ve been working with her every day on different body parts, she’s got the ones I just listed down GOOD, most recently we’ve been working on her “nose”.
** OMGoodness – I wasn’t even paying attention to the time! Today is Sunday and thats my “Bowling night!” So I’ve gotta get ready to go & be there by 545pm now! But this WILL be continued either later on tonight, or tomorrow! Thanks for reading! **
xo Andrea
░☃░ Rowan’s 2nd Christmas tomorrow! ░☃░
Hello everyone! SO SORRY it’s been quite some time since I’ve been able to put up a post!
Life here has just been NUTTS the past several weeks! ☚ Christmas Shopping, Christmas Decorating, ON TOP OF THAT, Jeremy (my guy, Rowie’s Daddy) hurt his arm on his dirt bike and I’ve been cleaning my house like a crazy lady b/c my family is comming HERE tonight for Christmas Eve (b/c most of them haven’t been here yet due to us JUST moving in mid-July’09) & don’t forget, on top of ALLL of that, we still had our regular Therapies, Dr.Appointments, Laundry/Dishes/etc, ALL that jazz — So I even actually took a few days away from the computer in general.. Just b/c I HAD to, know what I mean?
SO, Sunday evening the kids got to see Santa Claus, sit on his lap, get their pics taken w/ him, I’m going to upload Rowie’s pic w/ Santa & put it at the bottom of this post ( I would put Anthony’s up too, but for some reason, my mother wasn’t able to get it emailed to me? <- As most of u know I don’t have my own scanner or digi camera, so I rely on my mother to do all that “picture stuff” FOR me! LoL! )
But that was really fun on Sunday — And during last week Rowan had MOST of her therapies, she had Physical Therapy w/ Shari on Tuesday (not this PAST Tues. but the 1 before..) & NO we didn’t break any “records” but every week we can VISUALLY SEE Rowan getting stronger & doing better, SOMETIMES even doing things that I didn’t think she’d do for another 6months or a year even! So we’re VERY proud of her from a PT standpoint — as well are her Physical Therapists! Kelly AND Shari are QUITE happy w/ the progress Rowan’s made since they’ve BOTH been working w/ her (and thats been since August ’09 )
On Wednesday she had Bill the Vision Therapist, and it’s prettymuch “same ‘ol, same ‘ol” with him — Every session is BASICALLY the same, sometimes he might watch me feed her, or might watch her from in her “Stander” but it’s always the same concept with every visit, he takes different toys and/or objects & tracks them w/ her eyes. He’s NEVER said that she had a “Bad” session, not even a “mild” session, he ALWAYS leaves saying that she had a GREAT session. So I’m guessing thats a good thing? LoL!! ;D
Thursday is PT again, Kelly this time, and then later in the day was SUPPOSED to be Jen, the Special Instructor / Developmental Specialist, but Jen unfortunately had car trouble & couldn’t make it clear out to where we live, but we still had Kelly, and Kelly always brings the “Therapy Ball”. You’ve ALL seen it I’m sure, just one of those BIG HUGE Balls, but their really TOUGH – they can hold A LOT of body weight. And Rowie JUST LOVES the therapy ball !!
And lastly Friday she would NORMALLY have Speech / Feeding Therapy, but unfortunately her Therapist Paula is out having surgery & won’t be back to see Rowan again until after the new year. So we’re wishing her the best AS WELL AS Shari, who needed to take several weeks off after that last Tuesday she was here due to a wrist surgery she’s had done.
Well THEN, THIS PAST Tuesday, we made a trip up to the Children’s Hospital of Pittsburgh for Rowan to FINALLY get her Airway Study done. ( I believe the “correct technical term” for the test was an “Aero-Digestive Evaluation” ) REGARDLESS, That was what she had done, it went VERY VERY well, I had NO IDEA what to expect? They took a tiny tiny tube, like the size of a feeding tube, but it had a tiny tiny camera at the tip of it, and they inserted it up her nose, and down her throat ( which OFCOURSE she wasn’t thrilled with that part LoL) I THOUGHT she was going to scream & cry bloody murder, but she actually did VERY well & just kinda fussed around..she did a good bit of squirming, but never really “Cried”. So they fed her several types of consistencies to see WHAT her lower throat does, and Doc said everything looked “Normal for a child that has Cerebral Palsy” I asked EXACTALLY What did THAT mean??? He said that the MAIN problem with having CP is muscle tone – wether the muscles are too weak & floppy, or too tense & “toned”, it’s a common problem through-out the body.. hence why she can’t yet crawl, walk, or 100% sit without support.. Well according to him same applies with the throat / “swallowing muscles”…they can ALSO be “too weak” which according to him is what Rowan’s throat muscles are. They are TOO WEAK. He said that IN TIME, they’ll get stronger, that whenever our Speech/Feeding Therapist gets back to working with Rowan again to tell her the outcome of Rowan’s Evaluation so that she can show ME ways to help streghthen that muscle(s) & so that SHE can work with those Muscles as well.. So then I asked him the STILL unanswered question..? If all she has are “weak throat muscles” then WHY does she make the “Wheezing” / “Rasping” sound EVERY TIME after she eats? Sometimes it’s immediately after she eats, sometimes it’s 30-50 minutes after she eats, but it DOES OCCUR after approximately 99% of the times she eats.. He said the ONLY reason he could think of after reviewing the results of the “Modified Barium Swallow” that she had back in October, and the results of the “Aero-digestive Eval.” THAT day, that the sound she has in her chest after eating is simply acid reflux. ( Keep in mind, Rowan IS on Prevacid daily for acid reflux that she’s had since birth, and has been ON the prevacid since birth….) & the Dr. was aware of her reflux issues, he read her background PLUS what I told him at the beginning of the eval. So he increased her morning Prevacid dose from 10mg. to 15mg. and added “Zantac” at night.. He said to do this routine of Prevacid in the A.M. & Zantac b4 bed for 3 to 4 months, and if her “noise” gets better, then we’ve fixed the problem! If the “noise” stays the same or gets worse, then further “digestive” testing will be necessary. So I’m just taking it day by day for now — So far so good actually, I haven’t really noticed the “noise” comming from her chest after she eats since we’ve added the Zantac & increased the Prevacid.. maybe the answer this whole time WAS just the fact that it was reflux? Who knows? Only time will tell us!
He was an AWESOME Dr. though He said that she did SOO well, he was SO proud of her & how she didn’t even cry when he inserted the tube & remained her smiley self the entire visit, that they NORMALLY just give Children some stickers or a lollipop, maybe a small stuffed animal, but he had something VERY special for Rowan… He came back in the room with a BIG ‘OL CareBear !! It was HUGE & SOOO cute & sweet of him I was at that moment SO proud of her & realized what an AWESOME lil girl Rowan is. Most kids probably kick and scream when they have tests like that done, but she only wiggled around a lil bit, and as soon as the tube was removed from her nose, she was back to smiling & waving at everyone again. She truely is a blessing.
Which reminds me! ANOTHER “NEW” thing she’s began doing since the last time I posted, she now Waves “Hi” whenever you wave at her & say “Hi Rowie!” It’s TOO Cute!!
She ALSO found her hair! If you look at her ‘n say “Hey! Where’s Rowie’s Hair huh?” She’ll start running her fingers through her hair!! I’m SO happy to see her doing these things! After some Doctor’s said when I was pregnant that she’d have no quality of life, and some Nurses said when she was a newborn and not meeting the normal “newborn milestones” that she could possibly end up with a VERY mild personality & never really fully “understand” anything, etc. So to see her getting better & better every week with her Therapies, and to see her knowing to Wave when someone says “Hi” or knowing where her hair is when you ask her.. — those HAVE to be good signs that her future is going to be brighter than most anticipated. I’m her mother & ofcourse will love ‘n cherish her either way, but what a miracle to see her accomplishing the things she’s accomplished and ACCOMPLISHING actually!!
So that will wrap up this post on Rowan’s Developmental Journey, I hope ALL of my readers have an AWESOME Christmas tomorrow, and an awesome New Years next week ( just incase I’m not able to write before then!!) God Bless ALL of you for reading & supporting Rowan, AND her “Causes” -> Mainly being Hydrocephalus, b/c it’s whats CAUSED her other disabilities of Cerebral Palsy, Epilepsy, & Reflux. All of that means more to me than you could EVER know, and thats MY Christmas gift this year! :)
ℓﻉﻻ٥-»•*¨*•.¸ :
Andrea, Rowie, & family
Rowie holding a small gift on Santa's Lap '09
Poor Rowie :[ Thursday☞12.10.09
☀ OOPS!! I wrote this and THOUGHT I posted it on Thursday, when ACTUALLY I must’ve hit the “Save Draft” button rather than the “Publish” button! FORGIVE ME! So here is a post I’m posting on Sat. 12/12 that was written & MEANT to be posted on Thursday 12/10. Thanks 4 reading!! ☀
Well I haven’t posted about any therapies going on in Rowie’s life b/c she hasn’t HAD any therapies due to her cold, until today (Thursday) b/c I’m thinking that it’s been a whole week with her cold now that she truely SHOULD NOT be contageious anymore. (Sorry if I spelled “contageious” wrong!! ;p )
The 1st day she had this cold, it was pretty bad – very mild fever, LOTS of Sneezing with congestion & rumbling in her chest,etc. But then the 2nd through the 4th day it got A LOT better! NO Sneezing, NO congestion, just some coughing.. That was until Tuesday A.M. – She woke up & it was back to day 1 again, if not worse! LOTS of Sneezing, TONS of Congestion..just, the WORKS! & JUST when I thought it could get no worse, she woke up Yesterday/(Wednesday) and TODAY, with theese two days being THE worst days of the cold YET. The worst Coughing, the worst Sneezing, the worst “stuffiness”, <So on ‘n so fourth..> She’s just been MISERABLE. PLUS, her “down there” rash is STILL there…*SIGH* –If u read the PREVIOUS post b4 this one, you know that she has a “skin yeast infection cream” that she’s to have put on several times a day for 7 days. That 7 days will be up on Friday, a.k.a. TOMORROW. Now I’m not callin myself PSYCHIC or anything, but I think it’s pretty safe to say that by tomorrow it’s NOT going to be 100% cleared up, so right before I logged onto the computer here, I made Rowan a Doctor’s appointment. ✈Back to the Dr.’s office, & this will be Dr. appt. #3 for JUST her Rash ONLY…!!
So PLEASE say a little prayer for Rowan if you could, hoping that we get this “rash” thing figured out SOON, and that her cold goes away soon as well, b/c with Rowan being Epileptic, approximately 1 out of every 3-4 colds that she gets, results in a severe Seizure.. ANY thoughts / Prayers greatly appreciated.
As far as her therapies for the week, this week she only got to have 2, due to her cold. and those two were BOTH today (Thurs.) / her Speech/Feeding Therapist she’d NORMALLY have tomorrow being Friday, is on Vacation so just Physical Therapy with Kelly and Special Instruction with Jen was what we did today
She did well during PT, she worked on the “Therapy Ball” <- which she LOVES! ) and then she did some “Sitting without Support” (like EVERY PT session) and did 30 seconds the 1st time, did 1minute and 10seconds the 2nd time, and did 30 seconds again the last try. Which DIDN’T beat any “records” But was STILL very good, b/c keep in mind as always, that 3-4 months ago she couldn’t sit on her own for even ONE second, let alone THIRTY! ღ ღ
And on a final and different note, I have a friend that goes by @KnowledgeSafari on Twitter, and has a Website SOON to be www.knowledgesafari.com but TEMPORARILY using a blogspot URL@ http://knowledgesafari.blogspot.com/ and ’Knowledge Safari’ is about doing what they can to help Children with Special Needs and SUPPORTING their Families. (please post a comment & correct me if I’m wrong Knowledge Safari!!!) <- They follow my blog often, which I can’t say THANK YOU 2them enough for, it is GREATLY appreciated. I’ve taken the time & really looked at & read their blog and it has REALLY cute tips AND best of all, on FRIDAY ☞ TOMORROW, on their blog (duh, sorry! ), they’ll be doing ( I don’t know the details..) but know that their doing SOMETHING about Hydrocephalus, and I was TOLD that their “Friday Hydrocephalus Story” was inspired by Rowan herself & my posts about her Progress, Milestones, and ofcourse, the Struggles as well.. So CHECK✔ it out!! The link is above & it’ll open a new window for ya so you don’t have to navigate away from my page!
~❤~ ~❤~ ~❤~ ~❤~~❤~ ~❤~ ~❤~ ~❤~~❤~ ~❤~ ~❤~ ~❤~
As always, THANK U FOR READING & for visiting our page We SO LOVE all of our readers & Rowie supporters as well as just HYDROCEPHALUS supporters in general!! Spread the word! Join the cause & find a cure!!!
♥ ℓﻉﻻ٥ ♥
Andrea & Rowie
P.S. — Can NOT remember if I put this in the previous post or not, if I did, please forgive me & disregard, if not, then ReadOnPlease:
Rowie is SOO Super proud of her big brother Anthony who got “Student of the Month” at School for December’09 !! This is a GREAT accomplishment! I went to that SAME elementary school for SIX years, got ALL A’s w/ the OCCASSIONAL “B” & I NEVER got “Student of the Month” He got it LAST year in Kindergarden for the Month of March – and now AGAIN in 1st Grade for December!! So he got to have lunch with the principal, has his picture hung up ALL over the school, etc. It’s just a GREAT honor at that school to BE the Student of the Month so we’re all so very proud of him! ( OFF TOPIC FYI !! )
