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Caledonia, Mississippi (MS) - Partial Trisomy 13 Update 2-14-10
Kayla has a Vagus Nerve Stimulator VNS since 1999. the same one.
I have been waiting for the battery to go out so we can get one of the
newer models but I guess they gave her a really good battery??? The settings
are set pretty high too so who knows why the battery is still going strong?
I had hoped that the VNS would stop all the seizures but it did not.
She still takes Keppra, lamictal, and trileptal. I think it has helped
though just not to the degree that I had hoped for. I used to try to use the
magnet that came with it to help stop seizures ( when she would start a
seizure, you were supposed to be able to swipe the magnet over the VNS
implant and it would give a extra pulse and supposed to stop a seizure but
this never worked for Kayla, no one knows why, I do not even know where the
magnet is now. I thought they were going to wait two weeks to turn on
Kayla's VNS but when she came back from recovery they said they had already
turned it on?????
Update 5-15-08
 Rebecca is officially out of school for the summer.
I am kind of sad about it because she just loves school.
She really has accomplished so much, she will ride the bus alot of day
without her dvd player, which is huge!! She has also become so social, she
gives a little girl a kiss everyday when she gets off the bus and the little
girl just laughs. So Rebecca has made a friend, which is just amazing to
me!!!! She does not qualify for summer session because of the stupid
criteria that a kid has to meet in order to be eligible to go to the summer
session. Oh well, we are joining a pool that opens on memorial day and we
have arranged with one of Kayla's nurses to come 2 days a week for 5 hours
at a time so I can take Rebecca swimming. Also, my goal this summer for her
is for me to be able to take Rebecca to Walmart with out the dvd player at
least 2 times a week. We did this for the first time yesterday, and she did
very well, I only stayed in there for about 20 minutes, but I was happy.
Also Rebecca is playing challenger ball, which is a league for disabled
kids. She really don't play ball, she runs all over the field, like a crazy
person and she will run up to people and touch them and look at them to see
if she knows them. She will run around with her hand out like she wants you
to slap her high five and when you try to slap her hand she will pull it
back, like she is saying syke. It is so funny, I am putting a few pictures
up of Rebecca playing ball and one of her kissing her friend bye.
Kayla is still doing about this same , no problems or major sickness, she
has had a fungal infection in her scalp and under her armpits and her boobs
that we have been fighting for over 6 weeks, it is much better but not gone,
the dermatologist took samples and still have no results so I am still
waiting. She also has had a minor cold that keeps coming back and has had an
ear infection and UTI over the last 2 months, so I think her immune system
is in a slight slump or something. She has been enjoying walking with her
nurse in the pretty, warm weather that we have been having.
I have a few new picture of Kayla too, but someone stole my camera bag at
the special field day event at Rebecca's school that had my usb cable in it,
( thank goodness I had my camera in my hand) so when I get back to Walmart
by myself I will make a new cd and get the picture of Kayla up.
Cindy, mom to Kayla(16yrs.old) Rebecca (6 yrs.old )
both have partial Trisomy 13.
As clay in the potter's hands so are my children in the hands
of the Lord. (taken from Jeremiah 18:6)
For I know the thoughts I have for you says the Lord, thoughts
and plans for welfare and peace and not for evil, to give you
hope in your final outcome. Jeremiah 29:11 |
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West Point, Mississippi (MS) -
T-13 Translocation
Update 9-7-07
Kayla turned 16 today!!! and has had a really good day, she is not having
many seizures lately and not having any other medical problems.
We are having her little party Sunday but she enjoyed a Birthday cupcake and
ice cream and she loved it!!
Rebecca can now change out her VCR tapes, really she just started doing this
today.
Also she is doing better at school, I think that she has decided that she
likes her teacher and is becoming very attached to her. So I am so thankful
for that.
Also she has mastered a counting cookie jar that you have to put a little
plastic cookie in the jar and it will talk to you. I guess this goes
together with her finally putting her tapes in the VCR.
I am so glad that she is able to have some independence and some confidence.
Cindy
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Update for Kayla
6-7-07
Kayla is15 now and she is actually doing pretty well. She does have a few
seizures a month, maybe 2-3, but that is 150% better than 20-30 a month.
I had posted about her having her hip reconstructed in May 2006 and she
finally got over that surgery, and I pray that she will never have to have
anything major surgery like that again.
Her back is kind of an issue, she has scoliosis, curved forward in a kind of
a "C" shape, she is always slumping forward, even though she can straighten
up, but she doesn't even try.
She has had only one hospital visit since her hip reconstruction and that
was to the ER a month or two after surgery for pneumonia, it wasn't bad and
they gave her Rocephin through an IV and sent her home and she has been fine
since.
She has also not had any UTI's in about 6-8 months either, I have been
giving her one cranberry pill every morning with her breakfast for probably
almost a year now, not sure if that is what is keeping her from getting the
UTI's but I am not going to stop giving it to her.
She is still content for the most part, only gets ancy when she gets
uncomfortable or if I am a little later than usual on her feeding schedule.
Oh my goodness she has been eating ice cream alot. She has started getting a
poochy belly and her thighs are bigger than they have ever been. She is not
fat she still probably only weighs 90 lbs. I think she has super fast
metabolism!!! (she did not get that from me or her daddy) as much as she
eats you would think she would weigh 150 lbs. Oh well I guess I will have to
cut back on her food if she starts gaining to much weight, I don't want to
start having any more trouble getting her around, but food( ice-cream ,
cakes, brownies, anything sweet) is the only thing is life that she likes
and gets enjoyment from and I don't want to take that from her unless I just
have too. Don't think I just feed her sweets, :0) she enjoys anything that I
can mash up with a fork, even collard greens!!! yuck yuck. yuck!!!!
We started getting Respite care again in December 06 and that has been a
huge huge blessing. Now I can go focus on getting Rebecca out of the house
which is something I guess I will get into in Rebecca's update.
I want you to know that I think about you and your families all the time,
Everyone on the site has become part of my family, I so enjoy reading about
your joys and special times with your kids. and I am very sad when one of
you are going through hard times, and grief.
Thank you all sharing your journeys and for letting me share mine
I keep every one in my prayers
Love
Cindy Carter
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Kayla just turned 14 and she is totally dependent on us for
everything.
She can eat fork mashed foods very well and she does love ice cream and
really anything sweet. She has a lot of seizures , they still are not under
control ,and she is on 4 seizure meds and has a vagus nerve stimulator
implant for seizures too.
She has constantly gone down hill since she was about 7 or 8 but she doesn't
seem to be in any pain and she is eating well. (I have a picture here of her
at about 5 years old when she was at her best health and when she could sit
up and play some by herself)  You can see the difference in her as the years
have gone by. Kayla has no way of letting us know what she wants or needs as
she has never talked or pointed or anything, no matter how hard we have
tried, she is just happy to be in her own world. I guess?
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West Point, Mississippi (MS) -
T-13 Translocation
Update: 8-7-07
Rebecca is now 5 and starting kindergarten in 2 days. She is just a ball of
energy! She is so busy.
We had to start giving her clonidine to help her to go to sleep. I am so
thankful for the clonidine. Finally no more bed time battles.
Her favorite past time is to watch Elmo, or Dora and now a little veggie
tales and to rewind, fastforward and eject her tapes. She will do this all
day if I don't just make her come out and eat and play with something else
for a few minutes.
Then she is back to her tv. I am so glad school is starting so that she will
have more to do She has recently discovered that she likes to play in sand
She is mesmerized by it. She digs in it and picks it up and watches it fall
out of her hands. I have recently started giving her a protien drink
that I read about that is actually for kids with adhd ( which I think
Rebecca has in some form or another).
Anyway their has been a huge difference in her behavior. She is more
tolerant and just happier in general and more focused. Like the sand thing
and also she is more willing to let us help her sign. There is just a
difference in her eyes.
Why it worked?? I don't know, but it has been a miracle from God!! I am
looking into some other supplements that have helped other kids also
Health wise she is healthy and has had nothing bigger than a cold or virus.
We are very thankful for that.
All in all things are going well for us. I will update again in a few weeks
to let everyone know how school is going!!
Cindy Carter
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9-30-05
Rebecca is very active and the complete opposite of Kayla, so it seems like
I have more to say about her, and for some reason I feel kind of guilty
about that. Rebecca is extremely near sited and after got her glasses
at 9 months old she has steadily improved.
Rebecca started walking Dec. 2004 and she hasn't looked back. She climbs on
anything and likes to scare me, I think.! She is very picky about her food.
She has to pick it up and look at it for a second and if I passes
"inspection" then she will eat it. ( usually she like things that are
circles or either sandwiches). She just decided that she would eat with a
spoon a few months ago and like her sister, she loves sweet things. I go
crazy trying to find her things that she will eat. She had a problem with
lactose intolerance and sugar ( milk would cause her to have diarrhea and to
much sugar caused gas pains) when she was little and it has gotten better as
she has gotten older.
 We are working on fine motor things. and she doesn't
want any part of it at all, she thinks that I am torturing her if I try to
make her color! (I hope she will one day, I so want to sit down with her
and color.) She loves TV especially ELMO and noggin, even though she seems
to kind a of like Dora a little bit now. She is funny about music, she has
to have her music, nothing new at all, same goes for TV. Also, Rebecca has a Chiari Malformation and she had surgery to repair it and that also improved
her greatly, I am not sure what impacted her development more the T13 or the
Chiari?
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 They are my sweet babies, most of the time (they can have some attitudes!!)
Rebecca is my saving grace because she interacts with me (not talking yet)
and she gives us hugs and kisses and poor Kayla never could do that, so I
feel like I am getting alot of the experience of being a Mama and not just a
caregiver with her.
I don't know why God gave me 2 with Trisomy 13, I sometimes struggle with
that. I'm not mad at God and I don't think I am bitter but, I sometimes
think that it is unfair. So I just don't go there to much and trust God
because he know the bigger picture and that is how I make it everyday.
Both of them have Trisomy 13, translocation
Thanks for letting me share our story.
Cindy, Reid, Kayla, and Rebecca Carter
We live in West Point, MS
If any one wants to contact us email us a
cartr229@yahoo.com |
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