[tri-med] Re: Well...we finally have some answers

Penny, 
 
You are the very best mom that I know or have ever heard of. You are so smart 
and creative to find solutions for Devon.
This ipod idea is absolutely amazing!! Despite the fact that Devon doesn't like 
anything on his head, it sounds like he tolerates these. 
 
I wish you all the best.
 
Barb


> From: pvictor@xxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx> CC: 
> Livingwithtrisomy13@xxxxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx> Subject: 
> [tri-med] Well...we finally have some answers> Date: Sun, 12 Aug 2007 
> 09:14:35 -0400> > Hi All :o)> Well?we took Devon to Dr. Blumenfeld on 
> Thursday?and we got some> answers?some good?some not so good. The really 
> great part is that Devon was> tested for the first time for glaucoma (common 
> with Trisomy 13)?and his> pressures are normal :o) If you?d have told me 
> Devon would let ANYONE take a> big fat pen lookin? thing with a little rubber 
> on the end and push it> repeatedly onto the surface of his eyeball 5 or 6 
> times each?I?d have told> you you were on drugs!!! But he did and we didn?t 
> even have to put him in a> head and body lock!!! Thank God for iPods!!! Today 
> was Devon?s new iPod> Shuffle?s debut and it DID help keep him much happier 
> while at the doctors> ;o) Nothin? like a little Sean Paul, Black Eyed Peas, 
> Disturbed, Green Jelly> and Guns-n-Roses with a little Bear in the Big Blue 
> House and hand clapping> songs tossed in to the mix to make him get jiggy 
> with it :o) The not so good> part is that his cataract is worse (the one in 
> the rt eye is not a concern> so much because that eye does not function well 
> at all anyway). It could be> operated on if it becomes a necessity?but the 
> big concern is that since> there will be an incision in his eye (mind you 
> it?s his only good eye)?and> if he messes with his eye the first week after 
> surgery?like he does all the> time?he could do permanent damage and lose his 
> vision irreparably. Of> course?he could leave it alone because he?ll know 
> that it will hurt?.he?s> pretty smart that way. We are going to be using 
> Cyclogel to dilate his pupil> twice a day. Dr. Blumenfeld says that his 
> cataract is right under his> abnormally placed pupil and the cloudiness has 
> increased a little. Using the> drops will let more light in around the 
> cataract and should help somewhat.> Interestingly enough?we have been told at 
> every other appointment (with the> butthead guy before Dr. Blumenfeld), that 
> nothing had changed. Obviously, he> was wrong :o( Of course Devon is not the 
> most cooperative young man so he> didn?t make it easy. The thing is?while he 
> DID have his moments of> frustration, anger and temper with Dr. 
> Blumenfeld?Devon was VERY cooperative> for him?we didn?t have to put him in a 
> head lock even one time!! Dr.> Blumenfeld was able to do a very good exam. 
> The worrisome things are that> the doctor said that Devon?s pupils were not 
> reacting as well as he> remembers them reacting before. He said it?s also 
> possible that perhaps his> retina is just not functioning as it should 
> anymore?? There is a test that> he could have done at Bascom in 
> Miami?however?since his retina is not normal> in the first place the test 
> results would come back abnormal no matter what.> > > > > Devon is also on a 
> very good Lutein/Zeaxinthan supplement that should help> as well as all the 
> high Lutein content fruits and veggies we can stuff him> with. Devon is now 
> also off the Strattera since June 20th I believe,> because it?s more than 
> possible that it has caused part of the vision loss.> The Strattera is still 
> working it?s way out of his body as we think he?s> most likely a slow 
> metabolizer which would mean that instead of the> Strattera having a 5 hour 
> half life it would have a 50 hour half> life?meaning when he had his does 
> every morning, he was only at half peak> for the dose before. Figure it 
> exponentially and well?it could take a few> months or so to be completely out 
> of his system since it?s stored in the> liver/plasma :o( Dr. Cantrell 
> mentioned that the medication may have caused> Devon to lose the pigmentation 
> from his Macula and that the intermittent> improvements we?ve see could be 
> the rods and cones starting to work again???> I?m not sure whether that could 
> still be part of the problem or not??? Dr.> Cantrell?what do YOU think?? It?s 
> also possible that Devon has a Pterygium> which is a slight thickening of the 
> sclera between the iris and the nose> caused by the eye getting dried out 
> from sun, incomplete blink or in Devon?s> case?sleeping with his eye 
> partially open. It?s characterized by> bloodshottedness (my new word) in that 
> white sclera part of his eyeball> between the iris and his nose?which Devon 
> has. The doctor is unsure if he> actually has a Pterygium?but IF he does it 
> can be more easily removed than a> cataract if it moves over his cornea down 
> the road. We now lubricate his> eyes every night. The doctor wants him back 
> in 3 months and he will be> monitored closely. He has good days and not so 
> good days?his vision> fluctuates. We?re actually pretty hopeful that it will 
> continue to> improve?albeit slowly?as it HAS improved a little since the 
> middle of June.> I have very high hopes for the supplements to help him! Dr. 
> Blumenfeld> didn?t really have much to comment on the Lutein although his 
> office has> samples of Bausch and Lomb Lutein supplements in the waiting room 
> to give> away?so I don?t really get why he wouldn?t say anything one way or 
> the other> about it?? He said that he could do surgery to remove the cataract 
> but he?s> concerned that Devon would push on his eyeball or poke it the first 
> week> after surgery and obviously that could be disasterous :o(> 
> Soooooooooo?Thursday night around 2 AM I woke up with this continuous loop> 
> going through my head brainstorming ways to keeps his hands out of his eyes.> 
> At first I thought about a hard patch?and dismissed that idea because he> 
> would be completely blind if we covered that eye...plus there?s the fact> 
> that he has NEVER tolerated ANYTHING on his head or face! Small detail that> 
> one :o( Then I thought we could make it a clear hard plastic patch and drill> 
> holes in it??? But then of course short of bolting it to his head there?s no> 
> way I can think of to make it stay on :o( Now folks?keep in mind it was> 
> around 3 AM around this time and in the light of day most of my night time> 
> ideas seem pretty ridiculous :o( After dismissing those ideas it occurred to> 
> me that we need to limit his elbows so he can?t reach his eyes. I thought> 
> ok?maybe we could get a couple of those soft elbow pads, and maybe a PVC> 
> elbow joint and 2 short lengths of pipe (one for each side of his> 
> elbow?roomy enough to not hurt his arm of course). I thought after getting> 
> everything the right lengths we could then seal the fittings together (not> 
> while it?s on Devon mind you) and cut the new gizmo long ways so that we> 
> could first put the elbow pads on and the take the split PVC gizmo and fit> 
> the 2 long halves together around his arms/elbows. Next we?d probably have> 
> to use some self grabbing ace bandage to hold it in place??? > > > > At this 
> point I gave up staying in bed and decided that maybe we?d just have> to club 
> him over the head to keep him knocked out until his eye heals??> NAH?most 
> people frown on that sort of thing :o( RATS! > > > > However?in the bright 
> light of day I thought about all the different braces> and splints available 
> and decided to look into that. I started when I went> to Ritter?s to fill 
> Devon?s new prescription. Ken (our pharmacist) and I> went through what he 
> had on his shelves and we got a few ideas?dismissed> others and ended up 
> looking in catalogues. There are a couple possibilities> in there and he told 
> me to take the catalogue home and call the company> because they?ve been 
> known to get creative with creating special things when> needed. HMMMMPPH! I 
> bet they never thought of my PVC brace!!!! When I took> the catalogue to the 
> car I decided to walk across the parking lot to Orange> Belt Pharmacy and see 
> what goodies they had. And BY JOVE I think I?ve got> it!!!! There is a DonJoy 
> Comfort Form Wrist immobilizer that I really think> would work and still be 
> comfy. I just gotta get 2 XLG ones and give them a> trial run to see if our 
> Houdini/Devon can get out of them. He?s pretty> determined when he wants out 
> of something :o) Just for a couple> examples?when we used a Tumble Forms 
> Feeder seat with him when he was> younger?he would try to get up out of it. 
> Keep in mind it has a harness and> the seat part is velcroed onto the curved 
> base. He couldn?t actually get out> of the harness but he ended up prying 
> himself off the base and then would> walk over to us all hunched over like 
> some deranged turtle with a weirdo> shell on it?s back :o) It was really 
> funny looking and he knew it :o) He has> also busted out of a papoose board 
> before with those 1 ½ foot wide strips of> Xtreme Velcro?the boy is a mini me 
> HULK!!!!> > > > I have even wondered if they could cast his elbows and 3? on 
> either side at> a slightly bent angle so maybe he could feed himself still 
> and do other> things so he wouldn?t go completely bonkers??? Does anyone 
> think they could> do that??? AND still wondering if a mild sedative just for 
> the time that we> need to keep his hands out of his eyes might help??? I 
> can?t help> remembering the loopy/dreamy smile he used to get in pre op 
> before surgery> when we gave him the Versed?kinda made me wish I could have 
> some :o)> > > > I figure we?ve got 3 months until his next appointment to 
> find a> solution?any suggestions would be greatly appreciated :o) This 
> way?when we> go back to Dr. Blumenfeld, we would be able to tell him we found 
> a way to> keep Devon?s hands out of his eyes so he could remove the cataract 
> :o)> That?s the plan anyway :o) > > Funny really?we?ve always said we didn?t 
> want to do cataract surgery unless> it meant the difference between Devon 
> being blind or retaining what vision> he has. I?ve known of too many trisomy 
> kids who?ve had cataract surgery and> ended up worse off after the surgery 
> because of scar tissue?at least it sure> seems like it??? But now that it?s 
> us/Devon?and watching him walk into walls> and the front of the house or 
> feeling his way to me on the couch with a big> grin on his face or missing 
> his bowl with the spoon?well?now it seems like> the cataract surgery is the 
> lesser evil?and it scares the *^%@ out of me!!!> Is it unrealistic to hope 
> that just the supplements will make the cataract> go away??? I guess it is 
> :o( I don?t really think there?s anything that> could make the cataract go 
> away completely except surgery is there??? > > > > Love,> > Penny...loving & 
> devoted wife to Joe, the best husband in the world...mom to> Nick (16 yrs 
> old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy> Tour, 
> RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (12> 
> yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in> 
> general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper> 
> the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue> 
> 12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me> 
> on our trisomy listserv at:> > <http://www.trisomyonline.org/victor.html>> 
> http://www.trisomyonline.org/victor.html > > AND...see our Trooper on FL Lab 
> Rescue's website at:> > <http://www.labradorrescue.net/success/index.html>> 
> http://www.labradorrescue.net/success/index.html (Look for the name> 
> Trooper...page 4 or 5 right now) AND :o)> 
> <http://livingwithtrisomy13.org/album9.htm>> 
> http://livingwithtrisomy13.org/album9.htm> > AND 
> <http://web.coehs.siu.edu/Grants/TRIS/>> 
> http://web.coehs.siu.edu/Grants/TRIS/> > "Faith sees the invisible, believes 
> the incredible & receives the> impossible"> > > > > Building ___ooOOoo__ 
> Rainbows> www.trisomyonline.org> Families Helping Families On-line> 
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