--

Hi April!

Nathan is six now and he is in aged 10yr old clothes and in a size 3
shoe (correct me if Im wrong but I think our shoe sizes differ
slightly from yours in the US) well put it this way Im in a size 5/6
depending on the shoe! however Nathan still does not eat correctly, we
are lucky if we get 1 meal a day down him, which I believe is a little
usual for this syndrome! I put it down to the fact he chocked so much
as a baby and a toddler he is not as bad now its gone from every meal
time to about once every 2 or 3 days, but he is still on 'mushy' foods
like strew soup mashed potato etc in fact he has been referred to see
a food specialized to access him (I really do think its me and Paul
who need the retraining in this instance!)

Nathan is not to bad on the toilet training yet when he involes
himself in something he does have a tendency to wet himself however
this doesn't happen to often

As for his sleep patterns again much improved since he started school,
when he was smaller he was given medicine to help him sleep or should
I say to keep him asleep

So how do you and husband feel about the prospect of him having to
give his job up to help look after Devon? I think if I was you I
would feel a little relieved and worried too?

What do you mean when you talk about Devon's aggressive behaviour ,
how does it manifest it self

Cant wait to hear from you ,,, Take care both of you



Regards........... Sandy xxxx












- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> It probably will not be long until Devon's father has to stay at
home with him. He is getting so big and with the aggressive
behaviors....it scares me.
> One thing I forget to ask is how is Nathan doing with toilet
training? Devon is doing OK most of the time, he still has accidents
frequently and he wears pull up type things at night. Did I mention we
got a weighted blanket? It really has done wonders!! It weights about
11-13 lbs and is a bit bigger than a baby blanket, but it helps with
tantrums and sensory issues. I found that when he starts getting mad
and can catch himself he will get it and hide under it. It cost
$200.00, but I am sure if you know of anyone who sows, they could make
one. It is made with flat marbles/rocks.
> How big is Nathan now?
> How horrible for your family! they did not come out and let you
know that is was going to be more than you expected? I would be upset
too, poor child!
> Devon still has many of the autistic traits, but he is doing better!
> Hope to hear from you soon, best wishes to your whole family!!!
> April
>
> Sandy <znandra40@...> wrote:
> ---
>
> O my goodness April it s like I'm reading all about Nathan! No really
> I swear its so amazing, Nathan had been under the care of a very good
> dentist who worked the kids with special and additional needs, she
> reported to us Nathan had 2 cavities and because they were starting to
> get loose she referred him to our local children's hospital to have
> them taken out as Nathan wouldn't tolerated her working in his mouth.
> So about 4 or 5 weeks ago Nathan was admitted as a day case to be put
> to sleep under local an acetic …April they took 7/8 teeth out claiming
> that in 12 or 18 months they may! Give him some trouble! I was so
> upset and the night that followed had to be one the worst nights I
> have ever experienced he wouldn't stop bleeding he vomited blood
> several times through out the night, Nathan is fine now but 4 of those
> teeth were fine and I was rather stunned by the whole thing.
>
> Our genetics' doctor ask us how is Nathans heart and I suppose
> because he has never had blue lips etc I'm happy to report that he
> doesn't appear to any problem in that area (apart from he was younger
> he would sweat so much until his hair was wet!) And he would be only
> playing with usual things, no running around or anything like that!
>
> Its Nathans behaviour I consider to be Nathans biggest disability he
> displays many `autistic traits' still a lot have improved as he has
> matured yet he is still very obsessive about things or people and god
> forbid if he looses a game or something he goes hysterical. Do you
> know I could go on and on
>
> I still work full time I have changed my job, I now work as a
> receptionist, but I truly mean this when I say all the credit is
> Paul's, as he is at home all day with all the kids (Paul works several
> nights a week as a doorman) plus he has 3 kids from his ex wife and
> they visit every day ! I have the easy option and I do respect Paul's
> patients and organisation skills he does a wonderful job
>
> well its getting late, I cant wait untill we talk some more take care
> my love to you both!
>
> With Kind regards....... Sandy xxxx
>
> In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> >
> > Yes I do remember about Rebeca, how is she doing, besides scared of
> dogs now? Scaring on the face for a girl is horrible. How old is she?
> A nice setting for your house, but I guess it comes with problems.
> > Devon has lost 10 teeth now! Eight up front and two molars in the
> back. He had a dental procedure done in June, they put him to sleep
> and fixed his teeth. I was so mad actually! His dentist of years said
> he was fine, no cavities no problems. I was wondering how he came to
> this conclusion, since Devon fights anything going into his mouth,
> with the exception of food. The last visit to that dentist was horrid.
> He started loosing teeth, so I called another dentist known for
> working with kids with special needs. On the first visit, he made a
> date for the hospital. Devon had several cavities and a tooth decaying
> even more because of his grinding teeth. He grinds when eating or
> sleeping. But he is fine now, teeth are all capped and sealed, so
> hopefully it continues this way.
> > Devon is seeing a heart specialist again. He just had a holter
> monitor on for 48 hours, I am hoping to hear the news late this week
> or next week. He has a PFO(common whole in his heart), and a EKG that
> came back abnormal. I thought it was going to be the whole causing
> problems, but it turns out some line called the QT line in the EKG was
> abnormal. He also has a abnormal heart rhythm???? His therapist found
> that after going from calm to three big jumps, his oxygen level goes
> to 88%+ and his heart rate jumps to 160, so asthma Dr said it has to
> be his heart?
> > He was also seeing an allergy/asthma specialist. He is now on
> advair too. We found that he is an IGE builder, so is allergic to
> everything.... The specialist figured it was something to do with his
> genetic makeup and his syndrome. I sure know what you mean about Dr's
> not knowing much! To me it seems like they excuse so much and think it
> is part of his syndrome. errr.
> > Devon is now 4'2"(maybe a hair taller now)and about 75-80 lbs. How
> big is Nathan now? Devon cannot wait for school to start, he goes to
> kindergarten this year. School starts September 6th.
> > We got in a couple new therapies for him that I want to share with
> you. First, this is his second year in hippo therapy (horse back
> riding) it is only a three week course, twice a week, but his gait has
> improved so much from it. I recommend you looking into this for
> Nathan. Next is swimming therapy. This is great,I cannot say enough
> about this. He has gained so much confidence in doing something all by
> himself! His therapist said he has no fat, so he is actually learning
> to swim(he does not float! LOL) She also said that with his lean
> muscles and long bones he could be a great swimmer, even said in the
> next couple years to think about interring him in the special
Olympics!!!!
> > How is work going? Last I remember you worked full time? I don't
> know how you do it!!! I go crazy at home, but I really don't think
> working is an option for me right now, hopefully soon, with Devon
> going to school, maybe even full time this year!! We are still having
> to stay under the income levels for state medical to qualify.
> > Devon is making improvements, we have been seeing a behavior
> specialist, so some things have gotten easier with him, how is Nathan
> behavior? I still consider behavior the worst in his condition. The
> more he learns to talk and pronounce things right the better his
> behavior gets. Plus we upped his meds, he is on abilify and clonidine,
> any change is meds for Nathan?
> > It is SO good talking with you!!! Hope to hear from you soon!
> > April
> >
> > Sandy <znandra40@> wrote:
> > --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> > >
> >
> > April Hi...Of course I remember you! Its so encouraging to hear Devon
> > is doing soooo well! Devon had his fair share of problems I recall and
> > its great news to hear he is doing so well. and you, how are you doing
> > April? I can relate to the 'new obstacles' thing Nathan seizures have
> > almost gone(fingers crossed) its been a good 18m since we last
> > witnessed one!
> >
> > The thing with Weaver Syndrome because it is such a rare disorder we
> > never can know or predict what to expect in the future for our
> > children and nor can anyone else all health professionals included! so
> > what I tend (or should I say TRY and do) is expect the best of Nathan
> > (in a realistic term) and you know he always manages to live up to our
> > expectations, it may take longer but he get there
> >
> > I regret my absence from this group but I dont know if you recall my
> > daughter Rebecca was at the time attack by a big dog while playing in
> > the park! (our house is actually situated just inside this park) it
> > has left her scared on the side of her face and head but at the time
> > our family just fell apart it was like you cope with so much with our
> > 'Weaver' kids that this incident with Rebecca seems to my our family
> > crumble...it has taken a while but we managed to pull every thing back
> > together.
> >
> > once again April thank you for your reply it has truly made my day!
> > hope to talk to you again really soon all my love
> >
> > Sandy & Nathan
> >
> > > Hi Sandy!!! How are things going? It has been a long long time! Do
> > you remember me? My son's name is Devon and he will be six October
> > 25th. Devon is doing OK. I'm sure he has made lots of progress since
> > we spoke last, but new obstacles keep coming. We finally got him over
> > the (for the most part) sensory dysfunction, he takes baths now
> > voluntarily, keeps seat belts on etc, it is nice!
> > > I hope to hear from you soon, it is good hearing from you again
> > after so long! I have talked with a care giver from the UK taking care
> > of a child with weaver syndrome, maybe it was two? on another site for
> > overgrowth syndromes recently too. Not a whole lot goes on in this
> > one, I wish more parents talked openly on here, this is a support
> > group for our kids!
> > >
> > > Best wishes!
> > > April from WA, USA
> > >
> > > Sandy <znandra40@> wrote:
> > >
> > >
> > > Its been a long time since I was last a visitor here in this lovely
> > > group!
> > >
> > > Hi to everyone.....My name is Sandy, my son Nathan was diagnosed
with
> > > Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
> > > doing ok
> > >
> > > All I wanted to do really was introduce myself to you all and
> > > hopefully some of you might say hi back, which would be great.
> > >
> > > with kind regards
> > >
> > > Sandy
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
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> > >
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> >
> >
> >
> >
> >
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