Devon Stewart Victor - Trisomy 13 Photos

Sadly...Many of the medical and professional community are woefully uninformed about Trisomy 13. Outdated statistics and misinformation cause so much hopelessness... and also cause many to withhold life giving treatment to a child who deserves the same chance any typical kid would receive.
~Penny, Devon's mom

3 weeks old

Nick’s senior picture

Devon has Full T 13 w/BALANCED translocation 5 and 13...he's now 9 yrs 5 months old :o) He weighs 68 pounds and is a little over 4 ft tall. Devon is an amazing little man...he's in the 4th grade (Multi Varied Exceptionalities), he's thriving, he's happy, smart and he has a wicked sense of humor :o) I'm Penny and my husband (Joe) and I live with our 14 yr old son (Nicholas) and Devon. Please feel free to read Devon's/our story if you'd like to know more about him. Click here to see Devon's moment of glory in Exceptional Parent Magazine - DeLand, Florida submitted: 11-14-04

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Here is Devon and his new pal Smoochie :o) May 2008:

Devon & Mommy - His 12th Birthday!

Update 10-24-08

Hi Everyone :o)
Sorry it took me so long to poke my head out :o) As usual, I have lots to report…so now would be a good time to hit the delete button if you’re not into reading.

Well…let’s see…Devon has been doing pretty good...well…uh…until these last 2 weeks and in particular today :o( Vision-wise, he’s doing very well. His silicone oil bubble that is acting as his new lens seems to be making it possible for him to see maybe even better than he ever has? I know, I know…that was a HUGE run on sentence…sorry :o) Donna and I actuallt took him out on errands to Walmart about 3 weeks ago maybe? And Devon did very well with a minimum of fussing. A HUGE improvement over the last several times while he was blind. Every jaunt out of his comfort zone freaked him out and it got to the point, it was just too much to try :o( He’s been doing very well in school and loving it. We have had him on a low fat diet since his pancreatitis and mal-rotated bowel surgery in July and August, in an effort to keep his enzyme levels good. BUT…unfortunately, he had what we think may have been a tummy bug a week ago that involved one bout of vomiting and lots of diarrhea…so we wrote off the vomiting episode as part of the bug. But early this morning he vomited again (a large quantity). I went out to order jelly beans for a science project Nick is doing (he couldn’t have had a jelly bean experiment when it was closer to Easter when jelly beans are EVERYWHERE! Nope…hadda be now when they’re so scarce!). I ran a couple of other errands at the same time. And when I walked in the door, Nick was standing behind Devon holding his shoulders with a look of panic on his face. Devon was doing his exorcist imitation and Joe was up in the attic fixing our insulation so he had no idea Devon was getting sick :o( I flung my purse and keys and bag down and ran over to grab the plastic bin we keep in here for just such occasions…but I missed 2 hurls :o( HUGE mess on half the floor :o( Nick asked if he could get me more towels before he vacated to his room as he was about to get sick too :o( About that time I heard Joe come in and hollered for him to come help me watch Devon and clean up the mess. PHEW! I have a call into the doctor because I’m worried it could be pancreatitis again :o( BUT…all that can be done for that is a clear liquid diet to let it heal again…and if it’s a viral bug still, then it just has to run it’s course I guess. GOD! I hate it when Devon gets sick…especially since his big surgery…scares me to death :o( As long as we can get a handle on his vomiting, we’ll be ok…so say prayers ok? I’m thinking we may have to go back to the GI doctor for possible reflux meds if this happens just one more time??? Oh…and he’s gained back about 11 or 12 of the 14 pounds he lost while sick :o)

What else…hmmmmm? OH! Hey…A couple years ago, I put in a request with Medicaid for a new stroller for Devon because he was getting a wee bit big for his 13” seat pretty blue plaid Convaid stroller. Well…drum roll please…I went and picked it up yesterday!!!!!!!!! WOOOHOOOOOOO!!!! No, I’m not kidding…2 years it took to get the dang thing!!! And it’s a beautiful blue Kid Cart Mighty Lite Stroller with a 16” seat thank you very much!!! Now I’m looking for a place to donate the pretty blue plaid one to. I’d try to sell it with my unemployment situation and need for grocery money being what it is (My application for food stamps is still pending)…but it needs new rubber (tires/wheels) and he busted one of the foot pedals off during one of his rants when the stroller deigned to stop moving :o( So I can’t very well sell it although if anyone needs one for their child and can get it repaired by whoever their DME people are, I would love to give it to you…but I’d have to get you to pay for shipping at this time. So let me know if any of you want it ok? Otherwise it will probably go to Easter Seals. It’s VERY cute I must tell you and I will miss the plaid colorfulness of it!!!

I WAS trying to put money away in Devon’s piggy bank for his own slide (commercial grade/larger size)…but I think that’s just not going to be possible…so I switched to a trampoline with an enclosure. He loves to play on his cousin’s when we go over there :o) I just didn’t realize they were more than a couple hundred bucks?? There’s just not that much in his piggy bank :o( They’re more like 350-400$. SO it will take a while since there are not any allowances going out since my lay off. Sooner or later though he will have one :o)

Nick is doing well too :o) He’s doing great in school! It’s seeming to turn out to be a much less stressful year for him? We’re just trying to wade through all this college prep stuff. He wanted to retake his SAT so he did the first weekend of this month. He now wants to retake the ACT as well. He thinks he can do better :o)
Say prayers for him that he does well on his extended essay (up to 4000 words…his is 3000 something) for Theory of Knowledge. And also that he tests out of his IB classes and passes them all with good scores!! I just ordered his cap and gown and will be browsing graduation announcements soon :o) I can’t believe he’s almost a grown man??? How can this be? He has to do 50 Creative Community Service hours and he will be volunteering at the Fall Art Festival next month. OH! HEY! His art teacher is putting one of his drawings in the exhibit!! It’s a large wild looking still life of a pile of shoes!!! The twist was that instead of the shoes looking like they really did color and design wise…they all have some sort of animal print on them. They look so real you could pick one off the paper and put it on :o) What can I say…they boy is good!!! He is waiting until his essay is done and then will be looking for a part time weekend job. We’re trying to get him driving as much as possible so that when we get our income tax, he can get his license and we can get him added to our insurance.

It’s been a rough few months for Joe and I…but we seem to be doing much better of late with much talking. It’s been very tense. The trigger was when Devon got so sick…I guess it just puts the screws to a normally good marriage. Neither one of us are ones to give up on ourselves though and like I said, we’re doing much better now. He is looking for part time work and with stores hiring for seasonal labor right now, we’re hoping he might get something? I may have a part time job at a Mail n Stuff place around the end of the month??? We’ll see? Joe is currently fixing the insulation in our attic that was upside down and adding more because the boys end of the house is always cold in the winters and hot in the summer. Our power bill has been high in spite of the new windows we put in before I lost my job. We thought that would make a good difference in the bill…but it didn’t :o( We had Progress Energy out last week for an assessment. They assess everything and tell you what you could be doing to save on electricity. She said we were doing everything we should be so this insulation thing is the last thing we can think of. We’d bought the insulation before I lost my job and thought seriously of taking it back for a credit…but after much thought it made more sense to keep it and continue with out original line of thought to reduce our power bill. I just hope it works :o) Our new health Insurance seems better than what I had through my work so far??? Weird huh??? One of Joe’s scripts is only 4.82 compared to the 10$ we paid before. One of mine is 4$ more than it was…but still good. AND the Neurontin that Joe and I are both on is too expensive even with insurance. So…I went to Phizer Pharmaceuticals and applied to their Customer to Care program and Joe and I qualified to receive FREE Neurontin. They send a 3 month supply to our doctors every 3 months and we’re qualified for the next year :o) HUGE help! Now if I could just either get approved for food stamps, find a part time job, or find a “customer to care” program for groceries/food every week…I’d be doing great :o) But…things seem to keep falling into place at just the right moment…so I am just trusting that it will continue to happen that way :o) Things have a way of working out…

My school is going great and I’m still having fun even though it ain’t easy! I’ve completed Medical Law and Ethics with an A and a 4.0 GPA and Medical Terminology (just yesterday). I did my term paper and oral presentation on Trisomy 13 and I got a 99 on it. I got a point taken off because I went over :o) Go figure…ME…talking too much!!!! LOL But seriously…there was/is so much more I wanted to talk about but I only had 3-5 minutes! I think I went more like 7…but all eyes were glued to me and they seemed VERY interested! Many came up to me and told me I was really good and knowledgeable and that I was very “in charge” making great eye contact keeping my audience captivated (lets face it, they WERE captive LOL) AND that they really understood my explanations for everything :o) It made me feel good. I believe I have an A in there as well because I got all A’s on tests with the exception of one 88% and I don’t know how I did on my final that I took yesterday yet. I also have perfect attendance so far and got a certificate for the first class and will get one again for this one. I’m shooting for the Dean’s list. If at the end of my first 3 classes, I have at least a 3.7 GPA…then I make the Dean’s list. My next class/es start Monday. I have Anatomy 1 and 2 for the next 2 months with the same teacher…and I’m looking forward to it hoping I can continue to do well. After that comes Cardiology I think??? AND I get to learn how to draw blood :o) WAHOO! I DID have to get a couple shots with more to come and DARN but that Tetnus shot hurt like billy blue blazes as did my 1st Hep B shot! I must be a wuss! My shoulder hurt like a son of a gun for 4 days!!! OH…after school a couple weeks ago I went in to Sihle and while there I sat and chatted with Samantha to kill time before a mandatory orientation at One Stop Employment. I was telling her about school and she asked me if I’d gotten any scholarships or grants and I told her about the Pell grant but also that I needed more. She got all excited and asked if I’d tried the BWP (Athens of Florida - Business and Professional Women). They’re local and she said she had been a member for a while and that they give scholarships to women going to school/college. She printed out the application for me too :o) She is writing a letter of recommendation for me and my friend Deane at Suntrust Bank is writing one as well. That will take care of the 2 professional letters (although both women are dear friends too). And then Jean across the street wrote one for me as well (the personal one). She gave it to me sealed “so it wouldn’t swell my head” she said :o) She and Samantha were both members of this organization too :o) I already filled out the application and requested my transcripts (although not impressive) from high school and I wrote my letter/essay too :o) So…keep your fingers crossed I get a grant :o) Samantha seems to think I’m a shoo in :o) Hope she’s right!!!

Now…for some funny stuff :o) I sometimes wish we had a camera set up in here! Devon is so funny! Last week, I was working on my project for school AGAIN (I got just a little obsessed with it)…and he got disgusted with me because his bath was late. So…first he asked me for his bath using his Tech Talk (graciously provided by Noah’s Never Ending Rainbow). I told him “in just a few minutes”. When I took a twee longer than “a few minutes”…he brought me the towels from the bathroom :o) LOL OK OK I said…just a few minutes…mommy’s working on her project. A few more minutes passed and still no bath so he resorted to desperate measures! I was typing my index cards for my oral presentation and all of a sudden I see his shirt fly across the room! HAH!!!! Not 2 seconds later…there goes his shorts!!!! By this time I’m starting to get up from my chair and what do I see??? Devon yanks down his pull up and WHEEEEEEE! Across the room it flew! Could have been real ugly…but thankfully he was dry  He was giggling maniacally the whole time!!!!! OK OK…so I gave the poor crusty boy his bath!!!! LOL AND…since his hospital stay…he has been sleeping much better…it must have reset his sleep clock? He has also put himself to bed a few times if he’s really tired and doesn’t want to stay up sleeping on the couch anymore. I think that while he was in the hospital that he learned his bed is his friend :o) Trouble is, we have to go to bed and turn everything off or he wakes back up fussing up a storm because he can’t sleep if anything is going on in the house :o( Oh well…ya do what ya have to :o)

One last thing! A while back when Joe and I were going into Petco looking for the fish tank we’d saved for for when Devon got his vision back. We had errands in Daytona trying to save on gas money as usual. When we walked in we stopped to glance at the Humane Society kittens at the entrance as usual. As we stood there, one of the kittens on the top rack kicked dry litter on us…no small amount either. I said out loud, “MAN does that kitten have a shovel or something…that was A LOT of litter!”. At that point we heard someone say “that kitten has like 7 toes on both front paws!”. Joe and l looked at each other and both of us went around to the other side to get a better look at the kitten. Joe was in love and I soon follwed! No…we did not go in there looking for a kitten…we usually don’t even shop there…and no we did not need a kitten! However…sometimes things just happen. I have never seen Joe get this excited about any pet except maybe Trooper! This kitten is black with a little white speck on his throat and it apparently looks just like a cat he had as a kid (it reminded him of happy times) :o) The Humane Society gave us a ton is stuff including lots of food and toys and they got him neutered and all of his shots :o) Yes…we adopted the kitten…he is a Hemmingway cat (polydactyly cat). He and Smoochie have become fast friends and playmates! They add some much needed comedy around this place :o) Although for the first few weeks, for some reason…every time Devon saw the kitten…he cried??? And any time he sees him up on the back of the couch or something he’ll go over and push him down to the seat part or to the floor. It was like he just didn’t think he belonged in his well ordered world??? But he’s getting used to him now…no more crying and he’s not mean to him or anything :o) Joe named him Buuuud (the u is drawn out like Rudy’s friend on the Cosby Show). AND we’re toilet training him and he is doing it so we won’t have to purchase litter :o) Actually, he’s toilet training himself :o) Still working on Devon but he’s coming along pretty good too :o) I’ll have to get a picture posted to my page. I also have a great new school picture of Devon to post to my page!

Well…did ya make it to the end??? Good on ya!!!!!! Chat later…do call if you can…I don’t seem to think of it when I can do anything about it so I’d love to hear from any of you :o)

- -
4-26-08

Hello All :o)
Well let me start out with Devon’s eye update :o) It’s about as good as it could be ;o) We took him for his post op check up Thursday and Dr. Blumenfeld said it looks good…the lens is where it should be, his retina looks good and it’s clearer than we’ve ever seen it :o) Now, it just needs to heal…but so far so good :o) We take him back in 3 weeks. We HAVE noticed that he is actually beginning to WATCH the TV again a little. I started noticing it about 4 days ago when he was watching Elmo’s World/Sesame Street. Silly Mr. Nudo (or is it Noodle?) was doing one of his silly skits and Devon watched the whole thing just crackin’ up the whole time :o) I’ve since seen him doing it more. There are also other little things here and there that let us know that he’s seeing a little better and I think there will be more improvement as he heals :o)

The next big news is that we went and picked up Stumpie this morning :o) The first very important thing I should mention is that he is actually a SHE :o) I obviously didn’t get a good enough look when she was in Devon’s lap and I think I just assumed she was a male because “WHO WOULD NAME A PRETTY LITTLE GIRL DOG STUMPIE????”. We’re going to have to come up with a better name. So…your mission, should you choose to accept it, is to help us come up with a name more suited to a little girl :o) I also saw that in good light she’s actually a deep brown color with a wide (like 5” wide) strip of black down her back with a long Bassett hound tail and Bassett hound legs and paws. She has a white blaze with freckles on her face and adoring brown eyes :o) Her ears are big and floppy but not as big as a purebred Bassett hound. She’s adorable :o) She was very happy to be out of the truck when she got there and didn’t pay much attention to us at first with all the other dogs and people around…but she soon turned her smootchies on us with a vengeance :o) We took her into the store and bought her stuff (I had a ball) :o) She picked her own toy…a long red terry cloth wiener dog squeak toy :o) She’s….OOPS! no more wiener dog toy…she’s torn a hole in it :o( Oh well :o) When we left I put her in the front seat and Donna was in back with Devon and I went to put the stroller and all her stuff in the trunk and she crawled into the back to smootch Devon and lay next to him…and then she came back up front to ride shotgun on the way home. She seems very comfy with everything :o) I called home to let them know they needed to get Trooper on his leash so we could introduce them on neutral ground. Nick wasn’t there because Uncle Brett came and got him for Autumn’s birthday party already but Joe took him up the road and while Donna took Devon in the house, I took Stumpie up to meet him. I think her being a little girl and all helped Trooper accept her faster and better :o) After they wagged and sniffed and sniffed and wagged, we set off for home :o) I let them outside in the back fenced area and they were quite happy. Trooper laid down and Stumpie kissed him and laid down right up against him :o) It does however, seem to irritate Trooper when she walks right under his belly (I told you she was short :o) But all in all he seems to be quite happy with her arrival :o) I need to give her a bath before we have her come in here to be with Devon…she’s a little stinky and flaky :o)

June 18. 2006
Hi Everybody :o)
We celebrated Devon's 11th birthday yesterday...his birthday was actually Thursday :o) The day started with us getting up early and Charleen picking me up at 8 to drive to Green Cove Springs to pick up my "pick up only" ebay win for devon's birthday...a 4ft from head to toe Bear from Bear in the Big Blue House :o) Bear is SOOOOOOOOOO cute and squishy/huggable...well worth the steal I got him for (9$)...I think it probably cost more in gas to go get him then the purchase price :o) Anyhooooo...we got back to the house around 12:45 - 1PM...party at 1:30. Donna had come over to help Joe with Devon and getting ready for the party at 8 AM :o) Joe went and picked up his cake (Pixar Cars with Mater the Tow Truck as the main charactor on top) chocolate with whipped cream frosting...YUMMY!!! So....we had mom, Mr. Albert, Donna, Charleen, Bella, my brother Brett and his wife Alice and daughter Autumn over for presents, cake and ice cream :o) Devon was SOOOOOOO excited...he was beside himself :o) Couple of smacks and tripping over people a time or two and of course he stayed pretty busy arranging people and then crawling up on them to sit between different pairs of people...but not too bad I don't think...behaviour wise I mean :o)
Devon had a GREAT time!!!! He ate 2 pieces of cake without a breath between...not much icecream though :o) Kitchen was decorated with Cars stuff...it was cute!!! Bear is ADORABLE!!!! and even better...Devon LOVES him!!!!!!! We never know if he'll like something or not....sometimes we're POSITIVE he'll love something we get for him...we get it home and give it to him and he doesn't give it a second look!!! Soooo...it's wonderful to see him playing with his new HUGE pal :o) It's funny watching him try to haul the Bear around...he's WAYYYYYYY big...like 4 ft from toe to top of head!! He got a stuffed Mater (from Cars), a marker drawing set, a red McQueen shirt (from Cars) and a beige Mater shirt (from Cars), he got like 40$ + Donna gave me 20$ for gas for getting him to summer rec :o) He got the Doogle movie...which he's watching right now and I think he likes it???? He also got a new Blue's Clues DVD called Fred's Birthday (Fred is a dress up paper/felt doll on Blue's Clues...he's called Fred Felt Friend ) :o) And Nick made him a CD with some Blackeyed Peas and Sean Paul music on it :o) He ripped open his presents with Joe only starting it so he could tear off the paper himself :o)

And MAN OH MAN....wait til you see the pics I took of him while we were singing to him...I swear that's his favorite part of his birthday! He was slamming his hands on the table drumming in excitement and I think he would have busted if he'd been grinning and laughing anymore than he was!!!!!
All in all, it was a good....exhausting day :o) I even went and got the usb cable out of the box my camera came in so I can hopefully figure out how to download the pictures I took and send them to you all??? Until then....take care and ALL you dads out there...HAPPY FATHERS DAY!!!!!!!!
Love,
Penny.

Devon Victor 11 yrs 2 mo
6th grade

Update: April 2006
I thought I'd tell ya'll that Devon has started horseback riding on Saturdays :o) It's with a group called F.A.I.T.H. Riders (stands for Furthering Abilities In The Handicapable). Today was his 5th time...and it's FREE!!!...otherwise we wouldn't be able to do it :o) He has ridden a chestnut/red mare named Sadie once but they prefer to put him on Navy Boy...a big bay/brown with black mane and tail gelding. The first time, there was whining...but he got upset when he thought he had to get off...we were headed back in the direction of the barn...but he perked right back up when we headed for the trail course instead :o) He gets to ring a bell, pick toys out of a mailbox and put them in a bucket, pick another toy out of a bucket and stick it to a velcro target...we walk over poles, do stake bend...he even gets to trot....his favorite...never fails to elicit giggles and works like a charm in stopping any whining :o)

The last time he rode the Saturday before last...he started fussing the minute I put his car harness on him and fussed all the way there...I should have known he was trying to tell me something. Turns out he was sick...he started diarrhea and vomiting and fever the next day and was sick the whole week...I got it on Wednesday and Nick got it Thursday :o( It was the pits!!!!!

Today he had a ball....MUCH better than any other time :o) The boy is fearless...he throws a leg over and rides backwards, sideways...claps his hands....high fives...doesn't hold on unless I say "HOLD ON!!!! We're gonna trot!"...And then he grabs hold and bounces like a fool...giggling the whole time!!! I'll do my best to figure out how to download pics to my computer so I can email them to everyone :o) I got some cute ones of course :o)

Today he even got to feed one of their pot belly pigs his banana ;o) A definite bonus as far as Devon AND the pig were concerned!!! Next Saturday Nick and Joe have an end of year banquet for the scholarship program...it'll be at Daytona USA at the speedway :o) And that same night we have a FAITH Riders awards banquet :o) OH yeah! And Nick's biology project/experiment got picked for the science fair and it won an honorable mention...he got a 98% on it :o) WOOHOO!!!!

Gotta go get rid of this headache...we're going salt water fishing today!!!!!!!! WOOHOOO I hardly ever get to go fishing...wish me luck!!! Maybe we'll catch dinner???
Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to Nick (15 yrs old...lover of Fishing, Dragons, Turtles, Metroid Prime, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10 yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Pooh, Elmo, & food in general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue 12/13/02 :o)
See our 3 boys on FL Lab Rescue's website at: http://www.labradorrescue.net/success/index.html (Look for the name Trooper)

Here is Devon's story :o)
My name is Penny and I'm wife to Joe and mom to Nicholas (14 yrs), and Devon (9 yrs 6 months old). Devon has Full Trisomy 13 w/ BALANCED translocation 5 and 13. Basically what that means is that Devon has my balanced translocation plus a full extra copy of the 13th chromosome...making his a full T13. How bout that for an interesting karyotype???? I am a "balanced" (no comments from those who know me please:>) translocation carrier...hence the t13. Nicholas has been tested also and I'm very pleased to report he is not a carrier! Devon was born June 15, 1995. I'd been in labor all night the previous night...the whole time thinking, "Oh cool, I don't have to go to work today!!!". Well...the pains started petering out around 5 am...so I grumbled as I got ready for work.

I called the doctor at around 9 am and told them about my labor all night and they wanted me to come to the office to be checked...my due date was only a week away. It was kind of funny because all morning at work (after I chanced to mention that I'd been in labor all night and that the pains were only coming every 30-45 minutes at this point), my boss and my co-worker (who is a retired EMT) were watching me as if they expected the baby to fall out of me while I was walking or something!!!! Gary...my co-worker (the retired EMT) even went out to the trunk of his car and checked his OB kit that he'd started keeping in there during my 7 th month :o) It turned out I had protein in my urine, my BP was 180/110 (AAAAHHHHHGGGGG!!!), and I had an adema on my calf the size of a football! OOps...didn't even notice that! I was shocked when the doctor said, "Well young lady, this is what we're gonna do...you're going to call your husband, drive across the street get yourself admitted and I'm going to induce you...you're going to have that baby today!!". While I was prepared for going overdue again (10 days with our first son)...I was not prepared to go early or on time! I got really scared because I'd had a really bad feeling throughout my pregnancy even though everything appeared normal...I felt like the only way to keep my baby safe was to keep him inside me. As it turned out it was a good thing I was induced...I believe Devon would have died inutero...not because of anything genetic but because he had the cord wrapped very snugly around his forearm and his neck! When he was born he had it all wrapped around him like he'd been taking macrame' lessons in there and he was also holding the lead wires that were going inside me...he was holding them so tightly in his fist that the doctor had to pry it out of his hand! :o)

He was 19" long and weighed 6 pounds 8 oz. His apgar scores were 9 and 10....and the doctor said he looked great....still...I had a bad feeling all was not well. He had a small hole in his lung and had to be put in an O2 hood because of his accelerated respiration and O2 sats...nothing serious though...they said lots of babies have a hole like that when they're born but it usually closes itself within 24 hours. His genitals did not look quite right either...he was retracted...also very common I was told. Later that night I was in the nursery with him to reassure myself and saw the back of his throat when he was crying. It looked funny to me and I called a nurse over and she in turn called a doctor over. He told me that I'd found a small cleft in the soft palate of his mouth. I was hysterical...now I wish that were all it had been...cleft palate??? what a breeze!! They said they wanted to do a renal ultrasound because a midline defect such as a cleft palate can sometimes point to other things...that was done the next morning.

9 1/2 yrs old

Our whole world started to fall apart that day when the doctor came in a very upset saying Devon had something very wrong with his kidneys and he would need to go to another hospital where they could look further. I assumed he meant in a day or two...NOT....within 45 minutes I had picked a hospital, a helicopter was there, my husband and Nicholas were there, my family was all there and the flight nurses prepared Devon for his helicopter ride to Shands Teaching Hospital in Gainesville. It was the most helpless feeling in my entire life!!! Nicholas held onto my leg and assured me that he would make sure Devon would be ok...all I could do was stand there numbly and cry and let my mom, dad and Joe hug me. He arrived a few hours before we did and when we got there his nurse told us they'd taken him off the oxygen...the hole had closed by itself! YEAH!!!!! More good news the next day (a Saturday)...the ultrasound lied...his kidneys were fine...he was taking nourishment, maintaining his temp and gaining weight so after 4 days we took him home... he looked great!!!

We went back for the consult 2 days after we got home and then our world really fell apart! The doctor and Lisa (our genetic counselor) told us all about T13...none of it good...we were told that he most likely would not survive his first year, and would be profoundly retarded. He gave us a referral for an MRI for his brain and an echocardiogram for his heart because 80-90% of t13 babies have brain and heart anomalies. They seemed real impressed with his hands (I thought that was kinda weird at the time)...apparently most T13 babies have clenched fists, Devon did not. We were told about scalp ulcers, blindness, deafness, seizures, extra fingers and toes, cleft lip and palate, and a host of other internal problems! In addition, we were told Devon would most likely never sit, roll over, crawl, walk, play with toys or communicate. So as not to disappoint anyone, we heard those two hated phrases...
1) "failure to thrive" and the ever popular
2) "incompatible with life".
Oh how I hate those 2 phrases!!! Ranks right up there with the word "retarded"...hate that one too!!!
Now let me tell you about our reality. When we were told he would not be able to play...we responded by looking for toys to grab his attention...some we hit it lucky with and some we didn't. We offered him toys and teased and played with him until he DID respond! At 3 months he was belly laughing and giggling and smiling the most beautiful smile I had ever seen!!!

Devon does not have heart or brain anomalies, while he is blind in his right eye...he sees quite well out of his left, he was not hearing impaired at birth but in my opinion, because of undetected fluid build up in both ears for his first 9 months (when he had tubes put in and his cleft repaired), he is now moderate/mild on one side and moderate/severe on the other. He wears hearing aids and an FM system in 4th grade.. yep that's right I said 4th GRADE!!! He normally loves school...but this year has been rough...long story short...he was being neglected and injured...I took pictures and kept notes/records and reported it and the teacher resigned...a new teacher is supposed to start here anytime....so hopefully he'll again enjoy school? Rides the bus...and adores his aid and the driver :o) He can go up and down the steps by himself with someone spotting....although he very much enjoys making me work to get him to go up the steps in the mornings :O( He's not using his chair at school or on the bus at all now! By the way...we're selling it so that we can buy Devon some recreational equipment :o) It's a Zippy/Quickie tilt in space wheelchair (in excellent condition), and it's midnight metallic purple (very dark with metal flake that catches the sun) and has lavender/grayish upholstery :o) Just email me if anyone's interested :o)

We still use his stroller when we go out most of the time...for our own piece of mind and for our sanity :o) He had one foot turned at birth (club foot???...no one ever used that term, but I think that's what it was?? ...who knows...rocker bottom???)...it pretty much fixed itself early on, probably because of all the early intervention! He has no arch and has UCBL's (splints) for both feet...although at present he doesn't need them. He has 11 sets of ribs instead of 12 (just a weird little quirky thing...not a problem). He has incomplete transpalmer creases....couldn't prove it by me, also very common in the general population. Lisa, our genetics counselor has incomplete transpalmer creases:o) They say his ears are low set...again...couldn't prove it by me :o) I mentioned that to Dr Carey in Rochester and he measured and said that no his ears are not lowset...but with his high forehead it gives that illusion :o) He also has capillary hemangiomas (sp?) basically these are "butterfly kisses" or "angel wings" ...or birth marks on his head and forehead. The one set of "wings" on his forehead have lightened up with time but still get bright purple when he's hot or mad or crying. Kind of like a built in mood ring :o) He was low tone well...actually mixed high and low for a long time...now however his therapist says he's NORMAL TONE!!!! YEEEEHAAAAAAAHHHHHHHH!!!! He does however, have low joint tone...makes them sort of "click" real easily. He's been sitting since he was 28 months...unassisted, cruising furniture and wall walking and crawling since 29 months...and is currently walking totally unassisted!! He used to use a wheelchair (midnight metallic purple with lavender/gray upholstery)...we only use a stroller now when we go to stores or Sea World or something :o) It's a very snazzy Convaid Cruiser...Blue Plaid and folds up like a big umbrella stroller :o) Noone told our little stinky boy about the failure to thrive thing...he weighs 68 pounds and is 50" tall now!!!!

He has Dysphagia (a swallow disorder that causes him to have an uncoordinated swallow, and aspirates regularly). Intensive speech therapy has helped a lot and he can now eat PBJ's, breaded fish filets, pizza, brownies, cookies and alot of normal foods like pancakes and cereal and toast and potpies...still have to be careful with meats and harder veggies though. Whatever he aspirates he purges on his own...he's never had pneumonia of any kind! He does however have Asthma....it causes a lot of pneumonia-like symptoms at times but is currently under control with one maintenance spacer treatment a day (Flovent). He hasn't had a flare-up in a LOOONNNNNGGGG time!!!

Devon's eyes seem to be his "genetic grab bag". He has Microcornea, Microopthalmia, bilateral colobomas, retinal dysplasia (incomplete retina-rt eye)...basically what that means is shallow orbits and small eyeballs (right is smaller than the left). The colobomas, because of where they are, make it so he has no lower field of vision. He is also being followed because of cataracts in both eyes...he's had them for about 5 1/2 years now and so far are not a problem. Glaucoma is also a possibility for the future...but we'll take it a day at a time! :o) He's been wearing some very smart looking glasses since November 1999 now and doing super with them!! A PS...since late 2003...Devon no longer needs glasses...his vision has improved...his astigmatism and farsightedness have both improved.

Devon was rolling around all the way from 6 months until he started crawling...fast little sucker too! He's currently at about the 24 - 36 month level physical/motor skills-wise and 24-36 month socially/cognitively . He can sign "more", "eat", "hi" and, "drink"...he says "mama" and "baba" and understands several words, phrases, and signs. He is also now learning to use a touch screen at home and an Intellikeys at school...and also PECS (Picture Exchange Communication System)...he gives me a picture of cookies when he wants them and a picture of a drink when he's thirsty :o)

He sleeps in a a Vail 1000 bed now (we just bought a used one...well the Knights of Columbus did :o)... Presently, (since he's been on Trazodone and even moreso since we got the bed just before Christmas 2004) he's doing MUCH better with his sleep patterns. The kitchen is also gated and the bathroom doors are shut all the time...have to keep an eye on him 24/7 as he now turns lights on and off...on and off...on and off (get the picture?)...and he can now open doors :o( Devon is also potty training and doing very well (it's been a work in progress for a looonnnnnngggg time)...I'm noticing him staying dry for much longer periods of time and we now have a voice switch on his potty chair so that he can call me when he goes to sit on the potty:o) He hits the switch when he goes to sit down on it and I hear "I need the Potty" and then I can run to him and pull his britches down....forgot to mention...when he goes to sit on the potty to go, he doesn't yet know how to pull his own pants down :o) Oh well...details details...no one's perfect :o)

His main mode of communication is PECS (Picture Exchange Communication System). For instance...if he wants cookies he gives me a picture of cookies...picture of cup of juice for juice... picture of a bottle of milk for a bottle of milk... etc He also has a very direct approach to things...he selects the video he wants to watch and brings it to us...or if his "eat" PEC isn't available he brings me a spoon :o) So you see there's ALOT going on up there in that noodle of his !!!!!! ALL of those things we were told he would never do...we encouraged him to do anyway..if he had not been able to do them after trying and trying then we would have been ok with that...but Devon is a very determined little man and does not accept defeat easily. To date...I have not known him to give up on anything yet. Things may take him longer to
learn...but he DOES learn!

We know that Devon could and in all probability will die while he's young (although we pray daily that we will be graced with his physical presence for alot of years to come)....for no good reason even, by that I mean that even though he has no real life threatening concerns (with the possible exception of asthma, dysphagia (swallow disorder that causes silent aspiration, and increased sensitivity to insect bites/stings). But we enjoy "pert near" every minute we have with him....leaving out those times I want to choke him...like when he gets up to party 2-3 times per night...or when I 'm scared to death when he's sick. I love him more than I ever thought possible and will let go someday when I'm forced to...I hope I can at least... not sure if I'll be able to or not! Too painful to think about. although I still do. We are so grateful for the time we have with him and I wouldn't trade him for the world!! I'd be happy to answer whatever I can for any who might have ????'s
Penny My email address is pvictor@cfl.rr.com

Click here for Oct 2005 article about
Devon & his family.

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All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.

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