Hi everyone...

I just wanted to share my event for today...I successfully completed
my very first marathon (yep..26.2 miles!) In all my months of
training ,I have never gotten a blister, but today I got what I
lovingly call my "alien toe!" It is a hugely swollen pinky toe that
is one big blister.

Oh well...believe it or not, I am already thinking of how I can do
it better next year!

Shannon

It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change. -Charles Darwin, naturalist and author (1809-1882)

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Shannon, OMG WTG that is just awesome! Keep up the great job.
take care pat

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Hi Amanda,

If you have survived the storms (literally and figuratively) you may want to check out the World congress On Disability this Thurs.-Sat. In Orlando Fl.

Cheers

Janice

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Although a very different myopathy, a good news story that cheers the
soul.

Janice


-----Original Message-----
From: OUR-KIDS [mailto:our-kids@...] On Behalf Of Niki
Shisler
Sent: 05 October 2004 12:13 PM
To: OUR-KIDS@...
Subject: [OK] My baby's growing up.


Hi Everyone,



I haven't written for a while; I'm pretty busy writing my book so I
don't have much time to post but I still keep an eye on the list.  I
wanted to share something that happened with Felix (nemaline myopathy,
trach, vent 24/7, power chair, g-button, blah, blah) at school last
week.



I went up to the school to talk to the special needs co-ordinator about
a couple of things and decided that, as I was there, it would be nice to
pop into the classroom and say hello to Felix.  He's just started year 1
after doing his foundation stage last year (US equivalent - kindergarten
and 1st
grade) so this is now "proper big-kid school".  Now Felix is an
unashamed Mummy's boy; I've always said that the best thing about having
a kid who can't walk is that they'll let you sit and cuddle them all
day, and Felix is a big smoocher.  I thought he'd be delighted to see
me.  Um, not quite.  He had his back to the door when I came in so I
watched for a few minutes.  He was doing some maths exercises with the
rest of his group and I was glad to see how well he's fitted in.  Then
he saw me but, instead of the smile and kiss I was expecting, he looked
*horrified* to see me!  He actually went pink with embarrassment and he
looked as though he wished the ground would open up and swallow at least
one of us (ideally me).  After a *very* quick peck on the cheek, I took
the hint and left.  Afterwards I realised that this is actually the best
indication so far that he is properly settled in to school.  He was with
his friends and he didn't want his MUM there making him look like a
baby.  We've come a long way to get to this point and I couldn't be
prouder.



Incidentally, Fee is a good example of how well inclusion can work.  He
is one of only 2 kids with disabilities in his school but they have
really gone out of their way to support his placement.  It has been an
incredibly positive experience for Felix, for his teachers, for his
nurses (who go with him and are now being trained as classroom
assistants, giving them new, valuable skills) and the other kids.  His
class are so proud of him and he has a group of friends who take it in
turns to help him (and fight for the privilege).  Every time I see his
Head Teacher, she thanks me for sending Felix to their school.



Love Niki

~~~~~  http://www.our-kids.org/    for Help/Info/Interest  ~~~~~


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Hi All,

One of the other mom's started this on the Our Kids group I am a member of.  I thought it was fun and very positive. So we list the perks of either having a special needs kid, or being a special needs person.

This is what they have come up with so far:

1.  We are READY for ANY catastrophe no matter where we are!  POOP happens! ALWAYS carry extra supplies in the car!  LOL

2.  Pushing a Wheelchair in a big crowd is like Moses parting the Red Sea!

3. You can mystify people by talking in code:)  PDD, MR, IEP, LD, GERD, PR, IUGR...

4.  For those of us with kids in a chair, how about:
     a) Wherever you leave them they stay!
     b) You get all the great parking spots!
     c) Impress the other kids with pushing a button and having your ramp fold down...

5.  Some adults in our lives assume we, the parental unit, are saints (little do they know)!

6.  Connecting with other non-saints in an instant as we recognize each others kids at the playground.

7.  The incredible teacher that for some reason choose to be born to this particular set of non-saints.  I've learned more about myself than about any ism tx or dx and continue to do so. I don't always appreciate the lesson plan but am in love with the teacher.

8.  You can decipher the difference between 250 screams and grunts, to their exact meaning.

9.   Everyone in the paediatricians office (and the ER) knows you and your
family by first name and puts you in the best exam room, ahead of everyone else in the waiting room.

10.     We never suffer when the power goes out (rather frequently) as we have a generator.

11. There is always someone at home (nurses) for deliveries, and safety.

12. You get to meet a lot of extraordinary people.

13. You can talk like a doctor and offer lots of advice on a range of issues.

14. You get to learn the meaning of unconditional love

Feel free to add your favourites!

Janice

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Some more additions to the list

This is what they have come up with so far:

1.  We are READY for ANY catastrophe no matter where we are!  POOP happens! ALWAYS carry extra supplies in the car!  LOL

2.  Pushing a Wheelchair in a big crowd is like Moses parting the Red Sea!

3. You can mystify people by talking in code:)  PDD, MR, IEP, LD, GERD, PR, IUGR...

4.  For those of us with kids in a chair, how about:
     a) Wherever you leave them they stay!
     b) You get all the great parking spots!
     c) Impress the other kids with pushing a button and having your ramp fold down...

5.  Some adults in our lives assume we, the parental unit, are saints (little do they know)!

6.  Connecting with other non-saints in an instant as we recognize each others kids at the playground.

7.  The incredible teacher that for some reason choose to be born to this particular set of non-saints.  I've learned more about myself than about any ism tx or dx and continue to do so. I don't always appreciate the lesson plan but am in love with the teacher.

8.  You can decipher the difference between 250 screams and grunts, to their exact meaning.

9.   Everyone in the paediatricians office (and the ER) knows you and your
family by first name and puts you in the best exam room, ahead of everyone else in the waiting room.

10.     We never suffer when the power goes out (rather frequently) as we have a generator.

11. There is always someone at home (nurses) for deliveries, and safety.

12. You get to meet a lot of extraordinary people.

13. You can talk like a doctor and offer lots of advice on a range of issues.

14. You get to learn the meaning of unconditional love

15. Your kid can't wriggle away when you want to cuddle them; you get a lot more smooches than with your NDA kids.

16 You always have a perfect excuse for why you can't attend boring family functions.

17.  There's a certain breed of ignorant people who don't want to get involved with people with disabilities, and these idiots are filtered out of your life altogether.

18  You really learn what's important in life, and what isn't.  You no longer care if your curtains and carpets don't match (you barely care if your *shoes* don't match).

19.  Don't even get me started on the joys of a child who's non-verbal!

20.  You sometimes get to see extraordinary kindness in people.

Feel free to add your favourites!

Janice

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<<searchq=contactivity.htm>>

Got bored and searched the web. Not sure I would ever use the word, but clearly has an internet meaning????

Have fun - how is Tobias? Haven’t heard since he had a fracture?

Keep well

Janice

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	Dictionary  Thesaurus  Web
Home		Premium: Sign up | Login

Search results for contactivity. Sponsored Links: Free Conductivity Guide Download this Conductivity Theory and Practice Guide now ! www.radiometer-analytical.com Web Results: 1 - 10 of about 197. Search took 0.13 seconds. Powered by Did you mean conductivity? Contactivity Contactivity helps your organizations to establish Internet platform for group discussions, advocacy campaigns or e-commerce, to develop your web and email ... www.contactivity.com - Oct 4, 2004 Contactivity Contactivity is a research and consulting firm that can help you to make optimal use of the Internet to implement your organization’s communication and ... www.contactivity.com - Oct 4, 2004 Contactivity Home Page contactivity.net. the fast-track to ACT! productivity. ... Call us at: 530-273-0001. info@contactivity.net. Copyright © 2004 Contactivity. All rights reserved. ACT! ... www.contactivity.net 2/21/01 Board # UII Missing R/C's No Contactivity Resolder QC ... 2/21/01 Board # UII Missing R/C's No Contactivity Resolder QC Labels Location Flash/Linux/VME/MB Identified Problems QC Return Top 10 D1 Bad 1 6 9 none UIC Y/ ... hepalpha1.phy.uic.edu Contactivity Centre online All material contained herein is © Contactivity Centre 4695 de Maisonneuve O. Westmount, Quebec, Canada H3Z 1L9 or call us at (514) 932-2326 Last updated 02-05 ... www.geocities.com SignOfKnowledge - Contactivity John Kellden Contact information Feel free to connect with me here through the add feedback link at the top, leading perhaps to a conversation in the forum ? ... www.webassistant.com Contactivity The Ultimate Contact Center Application. Miryam Brand. Applications Marketing Manager. This Presentation Includes: What is a Call Center? The Call Center Market ... www.kompa.hr Westmount, Seniors Seniors Seniors. Contactivity Centre 4695 de Maisonneuve Information: (514) 932-2326. ... westmount.ville.montreal.qc.ca the company for contactivityContactivity - ein neues Wort. Ein ... the company for contactivityContactivity - ein neues Wort. Ein neuer Weg. ...contactivity the company for Contactivity - ein neues Wort. Ein neuer Weg. ... www.convidis.de OneWorld ... Welke organisaties doen mee. Organisatie, : Contactivity, Bezoekadres, : Telefoonummer Faxnummer E-mail adres, : : : 071 514 1166 info@contactivity.com. ... www.oneworld.nl

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Thanks to everyone, especially Darlene, who encouraged us to get a
tricycle for Jacob.  We finally got one and he LOVES it.  I couldn't
find one with a seatbelt, but my husband made one for it.  I put a
picture of him on it in the "photos" sections.

Also, Jacob had his follow-up appointment for his right eye surgery
and she said it looks beautiful.  Also, she went ahead and scheduled
surgery for his left eye - Nov. 1.  I am happy that we will be
getting it over with.  She said it will take a few months for his
eyes to stabilize, as far as his vision goes.  So, right now he is
having some vision problems.  He will eventually have bifocals.

I hope everyone is doing well.  I think of you all often.

((((((HUGS))))))
Amanda

Well, we got back from the hospital last week, they ran a myriad of
tests on Mason and found nothing wrong. He had an upper GI as well as
a 24 hr pH probe to check for reflux. Watching them shove that probe
into his nose and all the way to his stomach was awful. These showed
that his Nissen/fundoplication was still intact, and showed only a
minor trace of reflux, normally they wouldn't do anything but in
Mason's case they decided to play it safe and put him on Prevacid.
They did a 24 hr EEG to check for possible causes of the seizure he
had in August, this was a follow up to the shorter EEG they did at
the time of the seizure, this too turned out to be normal. They
consulted with his pulmonologist and cardiologist. The pulmo did 2
nights of sleep studies since we were in the hospital for a week. The
found him to still have some hypoxic episodes at night, so they
upsized his trach from a 3.5 back to a 4.0 Bivona (we had just
downsized in June). The cardiologist did an EKG and found nothing
wrong, he had a heart echo in June which was ok. The neurologist then
ordered a brain MRI. Mason had had a brain MRI when he was 6 months
old, at this time he showed decreased myelin in his brain, which the
neurologist said was what he expected to see as Mason was 6 weeks
premature. At this recent MRI, the neurologist saw areas of atrophy
in the brain, which he says is a congenital abnormality seen in
Myotubular Myopathy. I had never heard that one before. He told us
Mason may have delays, which we know he has due to his environment
and not being able to physically interact with the world around him
as much as a normal child, the neurologist then said the areas of
atrophy he sees indicate that Mason has mild to moderate mental
retardation. This was very devastating to hear. My wife and I have
always said Mason's body limits him, but his mind is normal, we have
read of how children with MTM are actually more intelligent. Needless
to say, we took this info from the neurologist. like we do a lot of
what we hear with a grain of salt, who knows what Mason can do. The
neurologist also said to expect a long life - that was encouraging -
but Mason is three, from everything we have read, we were fortunate
to get him past his first year. Although we hope for Mason to live
the longest fullest life he possibly can, we are realistic, when you
read of stories like Matthew, who was only 2 months older than Mason,
it hits home about the mortality rate associated with Myotubular
Myopathy. It was nice to hear a professional predict a long life
though. The neurologist also said as Mason gets older, there will be
an "awakening" around age 7 where Mason will fully realize the limits
of his body and may become depressed with what he can't do. We are
already seeing a little of this. My wife did ask, that if Mason does
reach adulthood, would he be able to live independently, to which the
neurologist replied, no, he would always need some type of assistant.
This made us realize we really need to get our affairs in order and
set up a Special Needs Trust for Mason as Mason can only have $2,000
worth of assets and still qualify for most MediCal assistance
programs. The trust would allow him to have more and not have it
counted against him. Finally, the situation with our insurance still
has not resolved, come January 1, 2005, we will no longer be able to
use the hospital and specialists we have been using for Mason.
Although the hospital will still take our insurance, the
administration who my insurance is through CalPERS (California Public
Employees Retirement System) has decided to drop a lot of hospitals
due to their high rates - which sucks. We have applied for continuity
of care and hope to stay with this hospital and the established
specialists. I have fears of going to a new hospital and a whole new
set of doctors who will try to "reinvent the wheel" so to speak. We
have a few options - we can goto one hospital and keep our same
pulmonology team, but lose all the other specialists, or goto another
hospital and keep our same neurologist, and lose all the others, or
we can goto a third hospital and start over again with all new docs,
but have the privilege of being treated at the prestigious Stanford
medical center. We are leaning towards keeping the established
pulmonology team as it is pulmonary issues which cause Mason to have
to be re-hospitalized. The consensus on why Mason had the massive
seizure in August is that he had an episode of reflux which caused a
vasovagal response which led to the seizure. Overall though, Mason is
doing great.

Amanda, Thanks for sharing the photo of Jacob on his new tricycle. Jacob
your tricyle is way cool. Have lots of fun with it.
take care pat

Janice, Only those of us with a special child can truly appreciate this
list. (S)
How are you and Alstair doing? I think of you often.
take care pat

HI everyone,

Amanda- Love the picture of Jacob on the trike! Makes me want to run
out and get Javad one! (Keeping up with the "jones's" :) Glad to
hear that everything is going well with his vision! What a gift!

Janice- THe special needs list mad me laugh. I agree that only those
who are in the situation really understand. I think about you guys
daily!

Well, I survived my marathon. I must say that I discovered blisters
for a few days, but am thinking about walking the Seattle Marathon
in late November. (or maybe if I wimp out, I'll only do the half-
marathon) I did lose my pinky toenail (which doesn't feel that
great, but oh well.), but I think I'm going to try.

Anyway, Javad had his port put in last week and we actually only
stayed in the hospital for 3 days (as planned!) He is doing well.
Today (I didn't have school), so Javad and I spent the day home
alone (no nurse!). We watched movies and snuggled. It was great.
Relaxing for both of us! What a nice change of pace!

Anyway, talk to you all soon!

Shannon

Hi Scott and StaceyAnne,

Darlene was singing to the choir! I agree that you have to take what
the doctor says with a grain of salt. THis disease is very rare and
most doctors are learning with you. You know your son better than
anyone else. Don't let them tell you that he has anything wrong with
his brain. You know better than anyone.

I agree that you should stay with the pulmonologist. Good
pulmonologists are hard to come by! :)

I hope that things continue to improve. Mason is a real cutie!

Shannon

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Again some info from one of the other groups. You don't have to order,
but gives some ideas on stimulating our little bed ridden ones. A lot of
the moms have done home made jobs.

I like the "little room" and the "snatch and grab" station - I think
those can be made at home and constantly changed. Also we were looking
at having murals painted on "suspended ceilings" for Matthew that we
could change often and keep him stimulated whilst lying on his back.

Janice
http://www.lilliworks.com/
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For those of you who have computer access for the kids, this is a fun
way of keeping them stimulated, while freeing you up with some time.

Here is a website that will read the book for you:
http://www.bookpals.net/storyline/index.html
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I am happy to hear that Mason is doing great overall.  I am glad you
can take what the doctors say with a grain of salt.  You know Mason
and what he can do, and, frankly, that is all that matters.  I have
had so many doctors (especially while Jacob was in the NICU) tell me
that Jacob would not live past his 1st birthday.  I knew that wasn't
true and now here he is about to turn 3 and doing fantastic.  Yes, I
do think that Jacob's is cognitively "behind".  However, that is
only due to lack of stimuli and not being able to explore his
environment.  On the other hand, not many 2-year-olds can identify
all of the colors, numbers and abc's.  He can also spell his name in
sign language.  There just really is no limit to what our boys can
do.  I strongly believe they are only limited by us, the parents.

As for the doctor and hospital situation, I really believe a good
pulmonology team is difficult to come by.  We went through 2 before
finding the one we use now.  I wouldn't trade Jacob's pulmonologist
for anything, because, like Mason, most of his problems are
pulmonary related.  But we use Jacob's pulmo as his primary doc.  We
can call him for just about anything.  I am sure you guys will make
the right decision.  It is hard anytime you have to switch
drs/hospitals.

Take care, Amanda

--- In Myotubular_Myopathy@yahoogroups.com, "masonsparents"
<masonsparents@y...> wrote:
>
> Well, we got back from the hospital last week, they ran a myriad
of
> tests on Mason and found nothing wrong. He had an upper GI as well
as
> a 24 hr pH probe to check for reflux. Watching them shove that
probe
> into his nose and all the way to his stomach was awful. These
showed
> that his Nissen/fundoplication was still intact, and showed only a
> minor trace of reflux, normally they wouldn't do anything but in
> Mason's case they decided to play it safe and put him on Prevacid.
> They did a 24 hr EEG to check for possible causes of the seizure
he
> had in August, this was a follow up to the shorter EEG they did at
> the time of the seizure, this too turned out to be normal. They
> consulted with his pulmonologist and cardiologist. The pulmo did 2
> nights of sleep studies since we were in the hospital for a week.
The
> found him to still have some hypoxic episodes at night, so they
> upsized his trach from a 3.5 back to a 4.0 Bivona (we had just
> downsized in June). The cardiologist did an EKG and found nothing
> wrong, he had a heart echo in June which was ok. The neurologist
then
> ordered a brain MRI. Mason had had a brain MRI when he was 6
months
> old, at this time he showed decreased myelin in his brain, which
the
> neurologist said was what he expected to see as Mason was 6 weeks
> premature. At this recent MRI, the neurologist saw areas of
atrophy
> in the brain, which he says is a congenital abnormality seen in
> Myotubular Myopathy. I had never heard that one before. He told us
> Mason may have delays, which we know he has due to his environment
> and not being able to physically interact with the world around
him
> as much as a normal child, the neurologist then said the areas of
> atrophy he sees indicate that Mason has mild to moderate mental
> retardation. This was very devastating to hear. My wife and I have
> always said Mason's body limits him, but his mind is normal, we
have
> read of how children with MTM are actually more intelligent.
Needless
> to say, we took this info from the neurologist. like we do a lot
of
> what we hear with a grain of salt, who knows what Mason can do.
The
> neurologist also said to expect a long life - that was
encouraging -
> but Mason is three, from everything we have read, we were
fortunate
> to get him past his first year. Although we hope for Mason to live
> the longest fullest life he possibly can, we are realistic, when
you
> read of stories like Matthew, who was only 2 months older than
Mason,
> it hits home about the mortality rate associated with Myotubular
> Myopathy. It was nice to hear a professional predict a long life
> though. The neurologist also said as Mason gets older, there will
be
> an "awakening" around age 7 where Mason will fully realize the
limits
> of his body and may become depressed with what he can't do. We are
> already seeing a little of this. My wife did ask, that if Mason
does
> reach adulthood, would he be able to live independently, to which
the
> neurologist replied, no, he would always need some type of
assistant.
> This made us realize we really need to get our affairs in order
and
> set up a Special Needs Trust for Mason as Mason can only have
$2,000
> worth of assets and still qualify for most MediCal assistance
> programs. The trust would allow him to have more and not have it
> counted against him. Finally, the situation with our insurance
still
> has not resolved, come January 1, 2005, we will no longer be able
to
> use the hospital and specialists we have been using for Mason.
> Although the hospital will still take our insurance, the
> administration who my insurance is through CalPERS (California
Public
> Employees Retirement System) has decided to drop a lot of
hospitals
> due to their high rates - which sucks. We have applied for
continuity
> of care and hope to stay with this hospital and the established
> specialists. I have fears of going to a new hospital and a whole
new
> set of doctors who will try to "reinvent the wheel" so to speak.
We
> have a few options - we can goto one hospital and keep our same
> pulmonology team, but lose all the other specialists, or goto
another
> hospital and keep our same neurologist, and lose all the others,
or
> we can goto a third hospital and start over again with all new
docs,
> but have the privilege of being treated at the prestigious
Stanford
> medical center. We are leaning towards keeping the established
> pulmonology team as it is pulmonary issues which cause Mason to
have
> to be re-hospitalized. The consensus on why Mason had the massive
> seizure in August is that he had an episode of reflux which caused
a
> vasovagal response which led to the seizure. Overall though, Mason
is
> doing great.

Well, Jacob's right-eye cataract extraction was successful.
However, when I took him for his last follow-up, she noticed that
the lens in his left eye is severely sublexed (inward), so we
decided to go ahead and have that lens extracted.  This is good,
because now he won't have to wear a contact in his right eye, he can
just use bifocals to correct both eyes.  I am actually relieved that
we can go ahead and get this over with instead of having to wait
until the cataract in his left eye is so bad he can't see out of
it.  That is what happened with his right eye.

So, the next surgery will be on November 1.  Please keep us in your
prayers.

Love, Amanda

Just when you think you get one issue taken care of (Jacob's eyes,
in our case), another arises.  Jacob is having a VERY difficult time
getting his molars to cut through.  Just in the last few months, his
very straight incisors have become very jagged and crooked.  I
mentioned it to his pediatrician and asked for a referral to a good
peds dentist, but just found out last week that our insurance will
not cover it.  I am at a loss.  He has to go to the dentist.  His
palate is so narrow and there are days when he just cries and chews
all day.  Has anyone else been here, done this yet, or is it an
impending issue that will be dealt with in the near future?  Any
advice?

Thanks so much!

Love you all, Amanda

Just when you think you get one issue taken care of (Jacob's eyes,
in our case), another arises.  Jacob is having a VERY difficult time
getting his molars to cut through.  Just in the last few months, his
very straight incisors have become very jagged and crooked.  I
mentioned it to his pediatrician and asked for a referral to a good
peds dentist, but just found out last week that our insurance will
not cover it.  I am at a loss.  He has to go to the dentist.  His
palate is so narrow and there are days when he just cries and chews
all day.  Has anyone else been here, done this yet, or is it an
impending issue that will be dealt with in the near future?  Any
advice? 

Thanks so much!

Love you all, Amanda

Hi all!

 

We are now back from the hospital in Oslo. We spendt two weeks there.

Remi got his Nissen. They decided to cut him. Everything went great!! We are so happy!!

 

Maybe he is coming home for good at 01. november.

 

We are gonna take him home this saturday and sunday. He have to spend the nights at the hospital.

 

Here is pictures of Remi when he was home this summer.

 

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