Edited
from Carepages
March
25, 2007
Wow - 3 months without a post - a first!
We've been busy as usual. Sometimes I need to just stop &
smell the roses!
Kaston had his 6 month check-up with his cardiologist on the 21st
of March (yes Amanda, the same as Hannah's - weird huh!) and it
went pretty well. Our goals for this appointment was to see if
we could take him off of some of his meds and not have to go back
for another year. After his EKG & echo, it was decided to
keep him on his same meds and still come back in 6 mos. to continue
to watch rhythm issues. But overall, a great appointment - no
leaks, no rhythm issues, no enlargement, etc. - just ready to
see some more positive changes (like no lasix - I'm sooooo tired
of lasix - he's been on it since he was 6 mos. old & it gets
very tiring taking a 4 year old to the bathroom 4 or 5 times in
1 single grocery store visit!) It's hard to believe that his cath
for the fenestration closure was a year ago! He's changed so much
since then! He has grown so much - people are amazed at how much
he has grown - I actually am getting to buy new shorts for him
this summer! (1st time in 3 years!) He's still going to pre-school
and is learning so much. He absolutely loves music. He memorizes
songs so quickly and just sings all the time. He plays his little
piano & guitar constantly. We're thinking about getting him
into music lessons in the fall, just not sure which instrument
yet. He loves sports so much and is actually very coordinated,
but we're hoping that if we can redirect that interest into something
else he's good and likes alot, then maybe the whole not playing
sports issue won't be as big a deal later on.
We're
gearing up for camping/lakin' season and we are all very anxious
for nicer weather. Kaston is wanting to learn how to wakeboard
this summer - he pretends the coffee table is the wakeboard while
I'm not watching! I can't keep him off of the furniture and counters!
He loves to jump off of the counters and the back of the couch
- he's quite the little dare devil! Yes - he's double O C (out
of control) - but what do you do?!
Please
be praying for our little heart friend Hannah (hannaholiviacollie)
from Dallas - she had a not so good PC appt on Wed and is having
a cath next week. They're looking at a possible transplant. So
please just keep her & her precious family in your prayers
this week.
Until
next time!
The Snyder's
December
19, 2006
here
we are - 6 days before Christmas! Whew! Oh yeah, and Kaston was
tested for Whooping Cough (Pertussis) yesterday at the hospital!
We should know 3-5 days if it’s actually whooping cough (I don’t
think it is). So that probably means we’ll find out like the end
of NEXT week I would imagine. You know how that goes. So in the
mean time, he’s in isolation here at home. Just great, right here
at Christmas. We are so ready for this year to be over!
Maybe
things will slow down after the new year and we can get a grip!
We’re planning on going camping the 2nd week-end in January, weather
permitting. It will be nice to get away. We had planned on going
to Austin to see Bob’s other grandmother right after Christmas,
but have had to cancel due to Kaston getting sick. So we need
a little break away from home. I am already so ready for summer,
I can hardly stand it! I find myself listening to Jimmy Buffet
just to get me out of the winter doldrums! And we’re not even
through December! AAAGGGHHHH!
We
hope everyone is enjoying this Christmas season. I haven’t had
time to send out Christmas cards this year, (the 1st time I think
since we‘ve been married), so please consider this our Christmas
greeting to everyone!
Merry
Christmas & Happy New Year!
God Bless,
The Snyder’s
September
18, 2006
I've been meaning to post about our trip to Dallas but just haven't
had time! Kaston's appointment with Dr. Zellers went well and
the echo showed that the implant device that was placed in March
took well. There's no leaking and everything with that checked
out great. We are going back to Dr. Luckstead (Amarillo PC) today
though. Kaston has to be on a Holter monitor for 24 hours. For
about the last month & a half, the color drains from his body
about 2-3 times a day. He becomes ghostly white and gets dark
circles under his eyes. He's not turning blue so they don't think
it has anything to do with his O2 levels. They're not sure what's
causing this but are going to start ruling things out, first by
checking his heart rate & rythym with the monitor. If any
heart parents out there have had this happen with their kids,
I would love to hear from you and get your input.
Please
keep Kaston in your prayers the next 24 hours while he's on the
monitor.
Jamie
September
01, 2006
I want to share with you some great news. This is from the American
Heart Association:
Hello
Friends!
The
American Heart Association announces that Kaston Lane Snyder
will be this year's Grand Marshall of it's annual Heart Walk
in Amarillo. He and his amazing story of being a Congenital
Heart Defect survivor will be the focus of the walk followd
by he and his team leading the 3 mile walk on October 7, 2006
at Medi-Park.
His
team, "Kaston's Lane", has been created for all of
his family and friends to join him for a wonderful opportunity
to spread CHD awareness and raise money for research for all
types of heart disease. We invite each of you to join his team,
help collect pledges and show your support for such a great
cause.
You
can help his team reach it's goal by either joining his team
or making a donation online, or both! Click on the link below
and you will be taken to his team page. The American Heart Association's
secure online fundraising website has a minimum donation amount
of $25.00. If you prefer to donate less, you can do so by sending
a check directly to his mom and dad.
So
let's have a grand showing on behalf of Kaston and show people
just how special this little boy is! And as Kaston is always
saying, "Scatter On!" and let's get going!
June
26, 2006
As
far as Kaston' health is concerned, he's doing great. The blood
work they did back in May for the platelet count came back normal
so that's a relief. He hasn't been sick all month (woo hoo &
knock on wood) and his foot has healed up fine. He has one more
follow-up with the podiatrist next month. Then to the cardiologist
here in August and back to Dallas in Sept for follow-up. I'm hoping
the trip in Sept will be it for a few years! He still gets pretty
worn down in the sun and all the hard playing he does. We have
to have some down time every day. Sometimes he'll have a nap in
the camper, but sometimes he'll just lay down in the shade and
take it easy for a while. But overall, we can tell a huge difference
from last year. He really keeps up with the other (older) kids
and just goes non-stop for the most part. All the kids at the
ski club (where we camp at) just adore him and really take care
of him & watch out for him. So it's just a good time all around.
So,
that's it for now - keep all the heart kids in your prayers as
usual, there's lots of kids having procedures & surgeries;
the list is long! I am going to try & post some new pictures
before we leave, so check back tomorrow for pics!
God Bless!
Jamie
May
15, 2006
I'm giving up on making it through the summer without posting.
Kaston's OK, but he's definately seen better days. He's still
doing great with the broken foot. But now, he has some other issues
going on. I took him in on Saturday because he has been coughing
so bad and has that icky nose thing again. His sats were down
and his lungs were tight. Did a breathing treatment in the office
with no improvement. And, would you believe he has a flaming case
of strep throat again (2nd time in 2 weeks)! Didn't even have
a clue! So, another shot and treatments every 2-3 hours. He's
also been having bloody noses. Not bad gushing ones, but enough
to have to get it cleaned up. And, he got hit in the head (it's
my fault, don't ask - I cried more than him!) and has a black
goose egg on his forehead. And it's BLACK as night. I've never
seen that black of a bruise. So, his pediatrician is concerned
with him maybe having an issue with clotting. So, to the hospital
we went for labs (what a wonderful mother's day!) to check out
his platlet count. He thinks he might possibly have an infection
somewhere because certain ones can mess up your platlets. Of course,
there's the whole asprin issue. But he has to be on that, no question.
We go back to the doc on Friday, in the mean time continuing with
treatments. Hopefully we'll hear something this week on the test
results.
I
hate to see him like this. He has done so good and now, he's back
to sleeping all the time again and in a bad mood all the time.
I thought with spring brought lower incident of sickness. Again,
my assumptions are wrong! I feel that it's as if he is being attacked
and have been praying for God to protect him and the rest of our
family (Korah broke her thumb 5 days after Kaston's broken foot
and she fell yesterday at Bob's parents house and has a huge bruise
on her leg).
Gotta go get Kaston up so we can take Korah to dance and we can
go for a much needed walk. I've been to the doctor 5 times the
last 9 days & still have 2 more appointments in the next 9.
I need some fresh air!
Jamie
May
08, 2006
Can you say "Whew"? Went to the foot doc today, and
yes, his 1st metatarsal is fractured, but only slightly (even
after 3 days of not staying off of it like they wanted him to,
enjoying every minute of jumping off of the coffee table and couch
and riding his tricycle) It is absolutely impossible to keep him
in the chair for more than 4 episodes of Little Einsteins, The
Backyardigans and the Wonder Pets, unless versed is involved.
Of course, before his closure, no problemo; he was your typical
couch potato!
So,
he feels that since the fracture is on the growth plate of the
bone that it should heal completely with no problems and he'll
probably limp around for a couple of weeks. He wants me to keep
tennis shoes on him for stability (another yeah right) as the
"boot" really wouldn't help in this particular healing.
But all in all, NO BIG DEAL!!! WOO HOO!! We go back on May 25
for more xrays to make sure it has healed completely and then
off to the lake we go! WOO HOO!!!
May
06, 2006
Thursday Korah & her little friend were playing outside with
Kaston at my mom & dads. He decided he wanted to do the monkey
bars like they were. So, Korah, being the big sister and wonderful
helper that she is, figured she would just help him cross. Well,
he decided to actually let go and Korah lost her balance and he
fell on top of her. I'm not sure exactly how it happened, but
Kaston broke his stinkin' foot!!!!!!!! .... So, we took him in
to his ped. Friday & he x-rayed him & sure enough, he
fractured his first metatarsal ( the bone that is connected to
the big toe, basically the biggest bone in his foot!) And wouldn't
you know, the podiatrist that he wants him to see was in surgery
all day Friday, so we have had to carry him around everywhere
and keep him off of his feet until Monday am (yeah right - like
that has happened!) He simply amazes me with his tolerance to
pain. Here he is with a broken foot and he is walking around,
climbing down steps, freaking us out! The concern is that the
fracture will become an actual break and then he will have to
have surgery. We're hoping that he'll just have to have a boot
for a few weeks to heal the fracture. We do not need yet another
surgery for this little guy!
Jamie
April
27, 2006
We saw Kaston's local cardiologist today. It was a great visit!
He was at 94% for his O2 saturations, his EKG was great and the
echo showed no leaking from the closure device! YEAH! He didn't
really enjoy the visit as he usually does, though, because he
wasn't feeling well. We took him to the pediatrician after the
PC visit and wouldn't you know, he's got STREP! He was running
a fever last night and this morning and woke up talking funny
and complaining that his throat hurt. So, 2 doc visits in one
day - one good, one bad. So, he got a shot (which he was none
too happy about), but at least he doesn't have to take "yucky
medicine". He's been asleep for most of the day. We see his
PC here in August and back to Dallas again to see Dr. Zellers
in September. I'm hoping we can avoid Dr offices until then -
it will be a record!
He
is still very active and happy and full of energy. It's still
so shocking to us that he has improved so much. We have really
enjoyed the nice weather and been going for walks. He rides his
trike down the street while I walk (about a mile) and he never
gets tired! And we've been going to the park while Korah's at
ballet and he loves riding in the stroller while we talk about
the ducks in the lake and things we see. He talks the ENTIRE 2
1/2 miles!
God Bless!
The Snyder's
April
13, 2006
Also,
alot of other carepages noted the airing of Guardian Angels, MD.
I am watching it right now on TLC. If you have a chance to see
it sometime, well, it's just so awesome and I know that so many
of you can so relate to this amazing family! I bawled through
the whole thing, because it's my life! So surreal watching the
same surgery Kaston had and seeing the raw emotions of the parents,
the same ones I have experienced. The little boy had hypoplastic
left heart syndrome & Kaston has sort of the same thing, but
opposite. He has a hypoplastic right heart with no tricuspid or
pulmonary valve (tricuspid & pulmonary atresia) - so basically
his entire right side of his heart is grossly underdeveloped and
completely non-functional. However, the surgery is the same and
the goal is the same - for the unoxygenated blood to bypass the
heart and dump into the lungs first and then back to the heart
and back out to the body. (I don't know why I'm typing this! Most
of you know what the Fontan is - right?!)
Anyways, I was fascinated seeing the actual surgery and Micah
Fraley's little beating heart. I just kept imagining Kaston laying
on that table and it gave me a new perspective as what the OR
is like.
If anyone out there knows the Fraley family, please let them know
how much we appreciate them allowing us into their lives and having
the opportunity to see their precious little boy's surgery. I
hope that this story has raised more awareness about CHDs and
given others a glimpse into the everyday lives of our children.
So,
goodnight for now!
Jamie
