Having problems with message search?
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:
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
>
>
>
>
>
>
>
> --------------------- --------- ---
> Got a little couch potato?
> Check out fun summer activities for kids.
>
Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.
Offline 
Send Email