Eleanor has come through
her first four surgeries of this stay with flying colors. She's now 9
months old and doing well, even though she can't sit up or roll over
because of the pins in her hips. On December 7, 2005, Ellie had pelvic
osteotomies performed to correct her malformed hips. Instead of her
legs splaying when she lies down, they are straight! She looks so long
now :). On December 9, she had a central line put in so that it would
be easier to administer medications, fluids, and nutrition. On December
14, Ellie had her bladder exstrophy corrected and a vaginoplasty
performed. The surgeons closed her bladder and put it in her abdomen.
They also brought her internal vagina into place and made an opening.
Now she has two out of the three openings that a little girl should
have. The surgeons attempted to pull scarred skin over where her
bladder used to be, but the skin did not survive. Currently, we are
waiting on a skin graft for that area. The wound seems to shrink every
day, though, so we are very thankful. We are also waiting for the pins
to come out of her hips. She has an external fixator connecting the two
pins in each hip and connecting the sets of pins to each other across
her abdomen. This makes it very challenging to change her colostomy bag
:). We love challenges! As to the question of when she'll be coming
home, we just don't know yet.
Photos from December 9,
2005 to January 15, 2006. Video
from January 8, 2006.
Tuesday, January 17, 2006.
Ellie is
still doing well.
She will get the pins out of her hips tomorrow. Woo hoo! We're hoping
urology will also take the stents out of her bladder tomorrow. We
haven't held her in six weeks! I'm sure I'll get plenty of cuddle time
with her in the coming days. Plastic
surgery also visited today and they said that she may get her skin
graft next week. There will be no cadaver graft; they'll use her own
skin right away. We're so happy! And Grandma and Nikki are visiting
today. It has been a great day and we feel so blessed to have all of
your prayers and support. I'll update again in a couple of days and let
you know how she's feeling with her pins out.
Oh yeah, we also got her a wedge so that she can practice sitting up again. The man that fixes the kids' wheelchairs and braces made it for her. What a great guy! Well, I'd better go back upstairs and see what Grandma and Nikki are doing to her.
Tuesday, January 17, 2006.
Ellie is
still doing well.
She will get the pins out of her hips tomorrow. Woo hoo! We're hoping
urology will also take the stents out of her bladder tomorrow. We
haven't held her in six weeks! I'm sure I'll get plenty of cuddle time
with her in the coming days. Plastic
surgery also visited today and they said that she may get her skin
graft next week. There will be no cadaver graft; they'll use her own
skin right away. We're so happy! And Grandma and Nikki are visiting
today. It has been a great day and we feel so blessed to have all of
your prayers and support. I'll update again in a couple of days and let
you know how she's feeling with her pins out.Oh yeah, we also got her a wedge so that she can practice sitting up again. The man that fixes the kids' wheelchairs and braces made it for her. What a great guy! Well, I'd better go back upstairs and see what Grandma and Nikki are doing to her.
Saturday, January 21,
2006.
Ellie had her pins taken
out on Wednesday. No more traction and no more fixator! I got to hold
her, which was exciting; she seems to have lost some head control from
being in bed for six weeks, but we'll get that back. She also had a
cadaver graft yesterday. We were told there probably wouldn't be a
cadaver graft, but the plastic surgeons wanted to be cautious and make
sure her own skin would take before grafting it. She should have her
own skin graft on either Tuesday or Wednesday of this coming week. I
think we can see the end! And the urologists are planning on taking the
stents out of her bladder early this coming week. Then all she'll have
coming out of her is her superpubic tube (which also drains urine). She
may go home with that; we'll have to see. I'm adding some pictures
today, so make sure to check them out at caringbridge.org!
Thanks for your prayers, and I'll update again as soon as I can.
Friday, January 27, 2006. Video from January 29.
Eleanor's
expected arrival
date at home will be February 1st. We're so excited! She had her skin
graft on Wednesday night and everything went well. The plastic surgeon
said the cadaver graft looked like it had taken well, so we're very
hopeful that her own skin will take. The new skin on her tummy has a
pressure bandage on it that is attached to the edges of the defect with
sutures. Ellie
doesn't complain much, though. That will probably be taken off Monday.
They then want to give her a couple more days here to make sure the
skin will take. Her stents were removed on Monday, and her superpubic
tube was clamped. She was peeing on her own! Her bladder has healed
well enough to hold urine. Unfortunately, we had to hook her superpubic
tube back up because she was urinating so much that her diaper became
soaked and got the dressing on her graft wet. We'll just leave the tube
in until the pressure dressing comes off. She won't go home with her
superpubic tube. She had a renal ultrasound yesterday morning to check
her kidneys and bladder. If they are fine, her tube will come out early
this coming week. She also got her central line out on Wednesday during
her graft surgery. She's not too happy about the IV in her left hand,
but what can you do? She has almost rolled over a few times, which is
awesome considering she has never come close to doing that before. She
also had music therapy yesterday; yes, the hospital offers it to all
patients. We had lots of fun! Both grandmas and Auntie Nikki have
offered to help clean house when we come home; what a blessing that
will be! Well, I'd better get upstairs to see how Peanut is doing. She
was sleeping when I left.
Friday, January 27, 2006. Video from January 29.
Eleanor's
expected arrival
date at home will be February 1st. We're so excited! She had her skin
graft on Wednesday night and everything went well. The plastic surgeon
said the cadaver graft looked like it had taken well, so we're very
hopeful that her own skin will take. The new skin on her tummy has a
pressure bandage on it that is attached to the edges of the defect with
sutures. Ellie
doesn't complain much, though. That will probably be taken off Monday.
They then want to give her a couple more days here to make sure the
skin will take. Her stents were removed on Monday, and her superpubic
tube was clamped. She was peeing on her own! Her bladder has healed
well enough to hold urine. Unfortunately, we had to hook her superpubic
tube back up because she was urinating so much that her diaper became
soaked and got the dressing on her graft wet. We'll just leave the tube
in until the pressure dressing comes off. She won't go home with her
superpubic tube. She had a renal ultrasound yesterday morning to check
her kidneys and bladder. If they are fine, her tube will come out early
this coming week. She also got her central line out on Wednesday during
her graft surgery. She's not too happy about the IV in her left hand,
but what can you do? She has almost rolled over a few times, which is
awesome considering she has never come close to doing that before. She
also had music therapy yesterday; yes, the hospital offers it to all
patients. We had lots of fun! Both grandmas and Auntie Nikki have
offered to help clean house when we come home; what a blessing that
will be! Well, I'd better get upstairs to see how Peanut is doing. She
was sleeping when I left.Monday, February 6, 2006,
Terre
Haute.
Ellie's
home! She was
discharged on February 2, and we got home at about 5 pm. Ellie is very
cranky and not
eating as much because she is teething. Thank goodness this started
after she returned home. Grandma Z stayed with us for two days to
help us pack our stuff away. I'm just getting back into the swing of
things. What a difference a couple of months can make! We have yet to
have Christmas at Grandma and Grandpa Z's; if you go by their
house, you will still see the Christmas tree through the front door.
Ellie is only on two medications, which is great. She will see her
plastic surgeon in mid-February for a follow-up appointment. She will
also see her urologist in mid-March for a follow-up appointment and
ultrasound. We can't believe she's going to be a year old at the end of
March! We've had her sitting up a lot since she's been home. She can't
sit up on her own yet, but she does fine on the couch. Her physical
therapy starts again on Friday. We should find out in mid-April when
her spinal surgery will be; it'll depend on when her plastic surgeon
says it's okay to have her on her tummy. Well, I've got to get back to
the housework. Check back often to learn about her physical therapy
progress and to find out when her next surgery will be. Thanks for all
of your prayers and support!
Ellie's
home! She was
discharged on February 2, and we got home at about 5 pm. Ellie is very
cranky and not
eating as much because she is teething. Thank goodness this started
after she returned home. Grandma Z stayed with us for two days to
help us pack our stuff away. I'm just getting back into the swing of
things. What a difference a couple of months can make! We have yet to
have Christmas at Grandma and Grandpa Z's; if you go by their
house, you will still see the Christmas tree through the front door.
Ellie is only on two medications, which is great. She will see her
plastic surgeon in mid-February for a follow-up appointment. She will
also see her urologist in mid-March for a follow-up appointment and
ultrasound. We can't believe she's going to be a year old at the end of
March! We've had her sitting up a lot since she's been home. She can't
sit up on her own yet, but she does fine on the couch. Her physical
therapy starts again on Friday. We should find out in mid-April when
her spinal surgery will be; it'll depend on when her plastic surgeon
says it's okay to have her on her tummy. Well, I've got to get back to
the housework. Check back often to learn about her physical therapy
progress and to find out when her next surgery will be. Thanks for all
of your prayers and support!Thursday, February 16,
2006.
Ellie's been home for two
weeks now, and is doing quite well. She has vomited twice since she was
discharged; we're obviously still fighting to keep food down. She is
not eating or drinking nearly as much as a healthy ten-month-old does.
Ellie normally consumes 2 oz of formula and 3 oz of baby food at a
sitting; that is why she is still being fed five times during the day
and once during the night. (A healthy ten-month-old consumes at least
24 oz of formula a day.) We did get a prescription for Zantac to see if
that will help with reflux and/or vomiting. Eleanor's physical therapy
is going well. She still cannot push herself up to sitting yet, but
she's getting stronger every day. We're also working on crawling on all
fours, kneeling and standing. Well, I've gotta go change her diaper.
Thanks for checking in.
February 18 Christmas party.
February 18 Christmas party.
Thursday, March 2, 2006.
Well, Ellie turns one in
less than a month! Woo hoo! We're so excited, especially because she
won't be in the hospital over her birthday. Grandma and Grandpa Z
are planning a birthday party in DeMotte for her. I'm just glad I don't
have to plan it :). Ellie's wounds are healing well, and her physical
therapy has been increased from once a week to twice a week to get her
moving. She is on Zantac for her reflux; she seems to be spitting up
and vomiting less. For a few days, she was eating more at a sitting
than she ever had before. Now she is eating less because she's teething
like mad. If it's not one thing, it's another! Grandma W is coming
to visit next week, Monday thru Saturday. What a help! I just got
finished playing a rousing game of 'peek-a-boo' with Ellie. That's her
absolute favorite game. She also claps and waves 'bye-bye' now, and
loves her teething biscuits. She's taken formula from a sippy cup twice
so far, but she'd rather play with it and then throw it on the floor.
You can't say we're not trying! Well, I have to go get her 5 o'clock
feed ready. Thanks for your continued support, and we hope to see a lot
of you soon!
Tuesday, March 21, 2006.
Five days until Ellie's
first birthday. We're so happy! Thanks for the card, Amy, Scott, Bryan
and Jessica. Ellie's been vomiting a lot lately, and we think it's
because she's just getting over a cold and she has also been trying a
lot of new foods. We think some of them might be a bit too sweet for
her; she's more of a veggie girl than a fruit girl. Her physical
therapy is going well; no crawling yet, but she turns her body when she
is sitting like she wants to get on all fours. Then I put her on all
fours. She puts one hand in front and falls on her face! We're working
on her arm strength. Ellie has also been drinking from a sippy cup more
and likes to eat Cheerios and sweet potato puffs (the kind that melt in
her mouth). She has also increased her food intake, which is a
wonderful thing. I think she's gearing up for her birthday. Not much
else to say. We're going to try cloth diapers with her; no, they're not
the kind with pins and plastic covers. Cloth diapering has come a long
way. Well, I've gotta get some lunch. Thanks again for all of
your prayers and support.
Monday, March 27, 2006.
Ellie's first birthday was
yesterday; we didn't do anything special. She did receive four books
from us and loved them (of course). She went to the doctor on Friday
for her cold and he gave her medicine to dry her up. It seems to be
working well; she hasn't vomited in two days. She's also back to
scooting on her bottom. (We guess she just prefers this mode of
locomotion.) We don't know if she'll ever crawl, but if she goes from
scooting to standing, that's fine with us! We'd already been told that
she doesn't have to crawl in order to walk. Ellie's birthday party up
north is this coming weekend; we've saved her big birthday present for
then. Well, I guess we'll see a lot of you there. Thanks for visiting
and for your continued prayers!
PS - She also tries to scoot when she's in her highchair (she turns 90 degrees towards the stove) and when she's on the changing table!
April 1 birthday party at Demotte Library.
PS - She also tries to scoot when she's in her highchair (she turns 90 degrees towards the stove) and when she's on the changing table!
April 1 birthday party at Demotte Library.
Monday, April 10, 2006.
Well, we thought Ellie
might have the chicken pox, but it turns out she doesn't (thank
goodness). She had her immunization on March 29th, and we thought she
might have had a reaction. It's probably just some sort of heat rash.
Anyway, Ellie's party went really well! A big, 'Thank you,' to all of
you who came. Eleanor is now putting things IN boxes instead of just
taking them OUT, which is wonderful. She is also scooting better; it
still takes her forever to get where she wants to go, but she can go in
a straight line now instead of around and around in circles. Ellie is
still not saying much, just lots of raspberries and 'dagun's. She is
reaching for things she wants to know more about (or wants to get ahold
of); she reaches for me and Jer a lot, and almost always with her right
hand. ( I usually give it a little kiss, especially if she's in her
highchair and I can't pick her up.) We're still working on the sippy
cup and the more solid foods. She still doesn't like the texture of
some of them. She also tries to go, go, go when we put her on all
fours; she just can't understand that she needs to move her legs as
well as her hands. Ellie will try to move forward with her hands and
then her legs go limp and splay to the sides. It looks quite
uncomfortable. Well, I've gotta go wake the peanut up for her feeding.
Keep those prayers coming!
Wednesday, April 19, 2006.
Ellie's MRI went well
yesterday. She was
sedated; we've never seen her so loopy! The MRI indicated that spinal
fluid is building up around her defect. She has also lost movement in
her feet. Therefore, Ellie will be having her
neurosurgery next Wednesday, April 26th. It's a lot sooner than we
thought, but that may be a good thing. She will be the first case of
the day (they'll start about 9 am) and it should take from three to
five hours. At least we won't be in hospital for eight weeks this time;
the surgeon says she should only be there for five days. Woo hoo!
That'll be her shortest hospital stay yet. They'll have her on her
tummy for the surgery, but during her recovery, she can be on her back.
Just as long as her hips and head are level. That is to keep the
pressure of the spinal fluid off of the surgical area, which will be
around her tailbone. The fact that she won't have to be on her tummy
during her recovery is also wonderful. Keep those prayers coming.
Thanks for stopping by!
Well, we are currently waiting for Ellie to return to us from the beyond. All of the reports so far today have been positive. She went into surgery at about a quarter till nine this morning and they got down to business about two hours after she went in. The OR staff had a lot of prep work to do to get her comfortably on her stomach. Jer is upstairs in the Day Surgery Waiting Room; I decided to take a walk and ended up in the library (go figure). Grandma Shirley and Auntie Nikki are here also; they went to get something to eat. Eleanor's neurosurgeon, Dr. Whitehead, said that it could take up to seven hours depending on what he finds. I'll write again tomorrow and let you all know how it went. We were able to get a room at Ronald McDonald House again. They called yesterday just as I had finished Ellie's five o'clock feeding. What timing! :) God seems to be providing for us every time we have a need. I'm going to go back up to the waiting room now. They think after surgery she will go to the Infant Unit; she's never been there before. It's always an adventure, that's all I have to say. God bless all of you for checking in, and I'll have more info tomorrow.
Hello, everyone! Ellie is doing much better today. We think she's over the after-surgery hump. She's allowed to sit up for 15 minutes at a time, and she gets angry when we lay her back down, so that's a good sign! She's also eating baby food and taking formula like a champ. The only pain medication she has had today was one dose of Tylenol 3. Ellie still doesn't like it when we roll her over. I got to see her incision today, and it looks really good. It's about 4 1/2 inches long; it's so thin though, she might not have much of a scar. Her neurosurgeon is very encouraged by her progress and says she can go home as early as Sunday. Well, I've gotta get off of the computer; the library is closing in five minutes. Talk at you all soon!
PS - Grandpa Bruce and Grandma Judy stopped by today. Ellie had a great time visiting!
Riley Hospital,
Wednesday, April 26, 2006,
3:27 PM CDT.
Well, we are currently waiting for Ellie to return to us from the beyond. All of the reports so far today have been positive. She went into surgery at about a quarter till nine this morning and they got down to business about two hours after she went in. The OR staff had a lot of prep work to do to get her comfortably on her stomach. Jer is upstairs in the Day Surgery Waiting Room; I decided to take a walk and ended up in the library (go figure). Grandma Shirley and Auntie Nikki are here also; they went to get something to eat. Eleanor's neurosurgeon, Dr. Whitehead, said that it could take up to seven hours depending on what he finds. I'll write again tomorrow and let you all know how it went. We were able to get a room at Ronald McDonald House again. They called yesterday just as I had finished Ellie's five o'clock feeding. What timing! :) God seems to be providing for us every time we have a need. I'm going to go back up to the waiting room now. They think after surgery she will go to the Infant Unit; she's never been there before. It's always an adventure, that's all I have to say. God bless all of you for checking in, and I'll have more info tomorrow.
Thursday, April 27, 2006,
9:44
AM CDT
Ellie's surgery went well.
The surgeon was able to get almost all of the fat off of her spinal
cord and untether it. The contour of her spine is so much different
now; she can actually lie flat on her back. Before, it was like she had
a tennis ball at the base of her spine. Grandma Shirley spent the night
with her last night. She said Ellie was up most of the night, probably
because she was in pain and uncomfortable. They've given her a bit
stronger medication this morning, and it seems like she'll be able to
get a bit more sleep. Ellie is back up on Stem Cell (where she was last
stay), which is where we requested she be placed. Her neurosurgeon
wants her to stay flat today, but tomorrow he wants her to start moving
around. She still looks really puffy; that's to be expected. I guess I
just forget between visits what a child right out of surgery looks
like. If I remembered what she looks like, I probably wouldn't send her
in for her next surgery. I suppose it's good that I forget then. Well,
I've got a couple of emails to write and then I'm back up in Ellie's
room. Thanks for stopping by, and keep those prayers coming!
Friday, April 28, 2006,
4:49 PM
CDT.
Hello, everyone! Ellie is doing much better today. We think she's over the after-surgery hump. She's allowed to sit up for 15 minutes at a time, and she gets angry when we lay her back down, so that's a good sign! She's also eating baby food and taking formula like a champ. The only pain medication she has had today was one dose of Tylenol 3. Ellie still doesn't like it when we roll her over. I got to see her incision today, and it looks really good. It's about 4 1/2 inches long; it's so thin though, she might not have much of a scar. Her neurosurgeon is very encouraged by her progress and says she can go home as early as Sunday. Well, I've gotta get off of the computer; the library is closing in five minutes. Talk at you all soon!
PS - Grandpa Bruce and Grandma Judy stopped by today. Ellie had a great time visiting!
Sunday morning, April 30,
2006.
Ready to go home.
Monday, May 1, 2006,
Terre
Haute.
We're home!
We got home yesterday about 2 pm. Ellie has been great so far. It seems that when Dr. Whitehead untethered her spinal cord, he also untethered her vocal cords! Now she babbles all the time. And the screams of joy! She's still tires a bit easily, but we're sure that will pass with time. And she's already back to eating her usual amount. Grandma Judy will be staying with us all this week. The week will end with a large yard sale. (We have to make room for all of the things Ellie has outgrown.) So all good news. Well, I've gotta change her diaper. Thanks for stopping by, and please keep us in your prayers!
PS - We go back in 4-6 wks for a post-op visit.
We got home yesterday about 2 pm. Ellie has been great so far. It seems that when Dr. Whitehead untethered her spinal cord, he also untethered her vocal cords! Now she babbles all the time. And the screams of joy! She's still tires a bit easily, but we're sure that will pass with time. And she's already back to eating her usual amount. Grandma Judy will be staying with us all this week. The week will end with a large yard sale. (We have to make room for all of the things Ellie has outgrown.) So all good news. Well, I've gotta change her diaper. Thanks for stopping by, and please keep us in your prayers!
PS - We go back in 4-6 wks for a post-op visit.
Thursday, May 11, 2006.
Ellie is doing so well! She
doesn't want to go to bed at her bedtime, so we've been battling her.
And she's now able to roll over onto her tummy and get herself up to
sitting. We think she'll be on the move soon. Now I REALLY have to get
that gate up in the kitchen. Her physical therapist says she's at an
eight month level, which is not bad considering how we started. She's
almost 14 months old now; Ellie's developmental pediatrician says she
looks 'spectacular'. She now says six or seven words and points at
everything. It is so cute! Well, this is a short update because I have
a lot to do. Let's just say she's blossomed since her neurosurgery.
Thanks for stopping by!
May 14.
Thursday, May 25, 2006, Demotte.
May 14.
Thursday, May 25, 2006, Demotte.
Well, Ellie is back to
vomiting a lot. For the past two weeks, she has vomited at
least once a day. We're going to up her dose of Zantac and
add reglan to her regimen of meds. Hopefully that will stop
her from tossing so often. Other than that, she's doing
great. Her physical therapist is impressed with her leg
strength and how well she can stand. And her arms are getting
stronger every day, too. She now does a tumbling routine
every night on our guest bed (roll over, sit up, fall on your face,
roll back over). It usually wears her out and gets her ready
for bed. We still don't know when her next surgery will be,
but we'll keep you informed. Thanks for stopping by!
PS - Congrats to Chad and Katie (the pastor of the church plant in which we are involved and his wife). They found out they will be having a little girl!
PS - Congrats to Chad and Katie (the pastor of the church plant in which we are involved and his wife). They found out they will be having a little girl!
Thursday, June 8,
2006,
2:24 AM, Terre Haute.
Well, I'm up getting
Ellie's
night bottle, so I figured now's as good a time as any to post an
update. She crawled today (Wednesday)! We are so excited. She is
amazingly
coordinated; she got fast really quickly. It was like it was with her
rolling over and sitting herself up. (It was such a surprise!) She just
decided she really wanted a toy that was across the room and didn't
want to wait for it. Now we REALLY need to get the baby gate up in the
kitchen. Ellie also loves musical books. She pushes the buttons; you
can tell she has her favorite tunes. The only thing is, her favorite
musical book is also a pop-up book. She has torn off the parts of the
pop-ups that she thinks stick out too much. Of course, that can be
remedied with a bit of tape. I just hate to see a good book demolished;
I guess she thinks it is for the best! I've gotta go get her bottle. Oh
yeah! She's also on a sippy cup now full-time (except for her night
bottle, of course). She's really making strides. Thanks so much for
stopping by! Phone
message.
Monday, July 10,
2006,
Terre Haute.
We had a grandparent
weekend this past weekend. Jer's parents stopped by on Saturday and we
went out to eat. Yesterday, my parents came by and had a visit. Eleanor
is doing very well. She hasn't vomited as much lately, and is eating
and drinking more. She has also learned to drink by herself from her
sippy cup and pull her shirt off over her head by herself. Her crawling
gets stronger every day, and we're sure she'll pull herself up anytime
now. Ellie is eating more table food, including lots of pasta and
veggies. (She tried grandma's lasagna yesterday and loved it!) She has
an MRI on Thursday (July 13) to determine what will be done with her
colostomy.
At the same time they (hopefully) get rid of the colostomy, the general
and plastic surgeons will close her abdominal wall. Ellie should have
this surgery in the next two to three months. Well, I've got my daily
chores to do. Thanks so much for stopping by!
(Tuesday morning Ellie was standing in her crib.)
(Tuesday morning Ellie was standing in her crib.)
Friday, August 18, 2006.
Wednesday, October 11, 2006 6:28 PM, CDT
Well, we've had a lot of
news in the last two weeks. Eleanor went to the spina bifida clinic at
Riley last Tuesday, and we found out that she will be having a surgery
on which we hadn't planned. Ellie will have orthopedic surgery in early
October to fix her feet; she walks on her heels constantly. The surgeon
will clip the tendon in the front of her ankle and then take the tendon
in the back of her ankle and thread it through her two lower leg bones;
it will then be attached to the front of her ankle where the clipped
tendon used to be. This will enable her to point her feet and her toes
and roll her foot correctly when she walks. The surgery will take less
than two hours and she'll stay overnight. (That will be her shortest
stay yet!) Ellie will be in casts for four to six weeks after the
surgery and then have braces.
We also got news on Monday that Ellie will not have the pull-through procedure done to get rid of her colostomy. Her surgeon says that her muscles are too small and if he performed the procedure, she would either be incontinent or have constant constipation; we all agree that either way, that's no way to live. So he said she will probably have a procedure to create a continent stoma; she will then have an enema every day or every other day to get rid of her solid waste. The only thing is, we don't know when the procedure will take place. Her general surgeon has to talk with her urologist because the appendix can be used for either the continent stoma creation or the entrance to cath her to empty her bladder. One will probably use the appendix and the other intestine. Usually the bladder surgery is done when the child is three or four; so she may have her colostomy until then so that they can do the surgeries at the same time. Well, Ellie is almost done with phyisical therapy so I'd better go. Thanks for stopping by and please keep us in your prayers!
We also got news on Monday that Ellie will not have the pull-through procedure done to get rid of her colostomy. Her surgeon says that her muscles are too small and if he performed the procedure, she would either be incontinent or have constant constipation; we all agree that either way, that's no way to live. So he said she will probably have a procedure to create a continent stoma; she will then have an enema every day or every other day to get rid of her solid waste. The only thing is, we don't know when the procedure will take place. Her general surgeon has to talk with her urologist because the appendix can be used for either the continent stoma creation or the entrance to cath her to empty her bladder. One will probably use the appendix and the other intestine. Usually the bladder surgery is done when the child is three or four; so she may have her colostomy until then so that they can do the surgeries at the same time. Well, Ellie is almost done with phyisical therapy so I'd better go. Thanks for stopping by and please keep us in your prayers!
Wednesday, October 11, 2006 6:28 PM, CDT
Eleanor's surgery went fine
on Monday. She went in at 9 am and came out a bit before noon. She was
in a lot of pain; usually when she wakes up, she is happy and takes a
bottle. This time, she kept crying and wouldn't drink. It took a while
to get her pain under control. She also had respiratory issues and had
to have an oxygen tent; her oxygen saturation was 60 at one point. It
should always be 80 or above. She had done this before with the same
pain medication, so we don't know if it was caused by that or something
else. Ellie spent the night and was released at 7 am on Tuesday. She
doesn't have casts on her legs; instead, she has hard plastic splints
up to her knees covered in gauze and then ace bandages with velcro
closures. She is in minimal pain now. We're just giving her regular
tylenol drops as needed. She's also banging her splints on the wall
when I'm changing her and on the floor when she sits in her chair, so
it must not hurt too badly! Her eating is not quite what it was before,
but we're getting there. It might be because her throat is still sore
from the tube. Anyway, she's recovering quickly and we go back in two
weeks for a checkup in the cast clinic. We don't believe she'll be
having any more surgeries this calendar year. Thanks for stopping by
and for all of the prayers. Talk at you soon!
Friday, May 11, 2007.
Hello, Everyone!
I'm sorry I haven't written in the journal for so long, but we've been really busy! As most of you know, Eleanor is walking quite well these days. She is not jumping yet, but her ability to climb stairs improves each day. She loves playing at the park (see grandpa's website for pics). The taller and faster the slide, the better :). She has also stopped vomiting altogether. We don't know if it had to do with the management of her chronic constipation or if she just grew out of it. Ellie hasn't had a surgery since her ankle surgery last October. She may have one coming up shortly, though. She will be visiting her plastic surgeon on Monday concerning the skin graft on her tummy. When we were at Riley visiting her urologist a few weeks ago, he was able to pull both sides of the normal skin on her stomach together while she was lying on the exam table. He said he would contact her plastic surgeon and suggest that they get rid of her skin graft. I guess we'll see :). Ellie also had an MRI on Thursday; we will get the results of that on Tuesday during her visit to the spina bifida clinic. Ellie still doesn't say much. Someone from First Steps evaluated her not long ago and said she's at a 12 month level. Needless to say, we'll be adding speech therapy to her list of services soon. It's not that she doesn't understand what we're saying; she follows commands and answers questions just like most other two-year-olds. She just usually signs, points, or directs us to the thing about which she is communicating. Anyway, like I said before, she's doing much better with her food intake and we hope to have her completely off of baby food soon. She is also drinking from a straw and cup; the sippy cup didn't last long with her. I guess she just didn't like it. Well, that's all for now. Thanks for stopping by, and we appreciate all of your prayers and support!
Kara
Sunday, May 27, 2007.
I'm sorry I haven't written in the journal for so long, but we've been really busy! As most of you know, Eleanor is walking quite well these days. She is not jumping yet, but her ability to climb stairs improves each day. She loves playing at the park (see grandpa's website for pics). The taller and faster the slide, the better :). She has also stopped vomiting altogether. We don't know if it had to do with the management of her chronic constipation or if she just grew out of it. Ellie hasn't had a surgery since her ankle surgery last October. She may have one coming up shortly, though. She will be visiting her plastic surgeon on Monday concerning the skin graft on her tummy. When we were at Riley visiting her urologist a few weeks ago, he was able to pull both sides of the normal skin on her stomach together while she was lying on the exam table. He said he would contact her plastic surgeon and suggest that they get rid of her skin graft. I guess we'll see :). Ellie also had an MRI on Thursday; we will get the results of that on Tuesday during her visit to the spina bifida clinic. Ellie still doesn't say much. Someone from First Steps evaluated her not long ago and said she's at a 12 month level. Needless to say, we'll be adding speech therapy to her list of services soon. It's not that she doesn't understand what we're saying; she follows commands and answers questions just like most other two-year-olds. She just usually signs, points, or directs us to the thing about which she is communicating. Anyway, like I said before, she's doing much better with her food intake and we hope to have her completely off of baby food soon. She is also drinking from a straw and cup; the sippy cup didn't last long with her. I guess she just didn't like it. Well, that's all for now. Thanks for stopping by, and we appreciate all of your prayers and support!
Kara
Sunday, May 27, 2007.
We received good news last
Tuesday when we went to spina bifida clinic. Her MRI showed no buildup
of spinal fluid around her defect. Her cord also showed no sign of
retethering. (Yes, previously tethered cords can do that!) Actually,
the neurologist said that her defect looks the best it has ever looked.
We were so happy! Ellie's plastic surgeon didn't give us much new
information. He did say that it would be possible to remove almost all
of the skin graft on her tummy, if the urologist and general surgeon
were on board. I guess we'll be hearing from them soon enough. Grandma
and Grandpa Z are here visiting right now. Well, I'm going to go join
everyone in the living room. Thanks so much for visiting!
Kara
Monday, November 26, 2007.
Kara
Monday, November 26, 2007.
Well, it's time to get on
my soapbox (again). (By the way, Ellie is doing wonderfully; she hasn't
had surgery for over a year now!) I would like to send a positive
message to all of you parents-to-be of OEIS kiddos. Recently I received
a disheartening email from a woman who has a female relative with OEIS.
She informed me that the majority of parents who find out in-utero that
their child has OEIS complex choose to interrupt (terminate) the
pregnancy. Personally, this makes me sick to my stomach. Now I know
what some people are going to say, and you are right. I have no clue
what variables are considered by the parents who decide to interrupt.
They may have extenuating circumstances that make termination the best
choice for them. But I can tell you from personal experience, running
away from your 'problems' or taking the easier path usually causes MORE
guilt and heartache. I cannot imagine my life without our beautiful
daughter. I believe that all of the tough times we have been though
have made Ellie a very strong (and caring) individual, even though
she's only 2 1/2. So please, if you are the parent-to-be of an OEIS
baby, please know that for the vast majority of these children (and the
people whose lives they touch), the pros far outweigh the cons. Please
choose life for your little one. I promise you won't regret it. (In
fact, you might learn a few things and in the process become a stronger
and kinder person yourself.) And if you ever need someone to talk to
(or vent to), just shoot me an email at jkwynn@verizon.net. I'm a SAHM
and I check mail about once a day. Merry Christmas everyone, and
remember the real reason for the season.
Kara
Kara
Friday, August 22, 2008.
Wow. This update has been
needed for a while. Well, Ellie will be starting mainstream preschool
in a couple of weeks. Of course, I informed the ladies at the
preschool of her medical 'issues'. They said that won't be a problem;
in fact, one of the ladies said her mom has a colostomy. That makes me
feel better! She'll only be going one day a week for 2.5 hrs, but it's
a start. It's a mixed class for 2-5 yr olds at a Methodist church. Two
people (including one of Ellie's therapists) recommended it to us; when
I mentioned it to a lady at the Covered Bridge Special Ed offices, she
said unprompted that it was a 'good one'. So we feel pretty good about
sending her there.
We are also (still) trying to get her next two surgeries scheduled. They will both involve plastic surgery, so it may take a while. Ellie will have a skin expander put in on her right side. When they're done filling it up, she'll have another surgery to remove the old skin graft on her tummy, put gortex mesh in over her hernia, and cover all of that over with the expanded skin. It may mean another Christmas in the hospital; we'll see.
As far as development is concerned, she is a regular 3-year-old. She loves going to church and to the pet stores to see all of the animals and to the library. Soon, her bedroom will receive a 'big girl' makeover, i.e. fresh paint and a twin bed to replace her toddler bed. Well, Ellie wants to type something.
Here's Ellie:
ellies0i9xaixsasa9ssssssssss98sa8s908fcc-[ekborpsor4[pbpeoprroerpoe4rpp;rto;lp
rpotgiggpirpiiifirottoitoigitti6igfifffg,vfigtortitkitibif
lwifwddvoeieufeiuruuuuuirvufukrruuurivtriojfjklfjk;j;ltlktlklkk
llobtfggokfgvgikgibmommrrgjgguirh7hfhdfb8ggg7hvghvh7uh8hh7
vydvhdhcdnunvncjjckikvlucilrvevnrseoeivruuhvrijvjkvrbtjjn
k j nenib uunibjiivwe nh buvhnfh b hijklmtjkm,bgfmkjiomnjtlmvf,vf
That was interesting. Hope you all are doing well. God bless!
Kara
Last weekend was exciting. Ellie went to the ER on Sunday for tummy pain; turned out she has a 1.6 cm kidney stone that has traveled to her bladder. She also had pneumatosis, or gas in the intestinal wall, which indicates an infection. So after 11.5 hrs in the ER, we were sent home with a prescription and orders to return if things got worse. I called her usual urologist and he's going to refer us to one of his partners who works on stone removals. They're supposed to schedule her surgery on Monday (not 'for' Monday), so we're hoping the surgery will be sometime next week. She also now has a slight fever and brown urine. (I know, TMI.) We just hope we won't have to rush her back. She also has a UTI (urinary tract infection) so she's on meds for that also. We'll keep you all posted as info becomes available. Please pray for her and her doctors/nurses. Thanks!
Kara
Tuesday, February 3, 2009.
Howdy! Ellie's 4th birthday party went great; we had about 10 other kiddos here at the house. Super crazy, but super fun!
Anyway, her fill-ups have been going as planned; a bit of pain afterword, but she's up and running around by the end of the day. Now we're just waiting until the 21st when she has the expander taken out and her tummy fixed. I'll update again at that time. Thanks a bunch, and keep those prayers coming (esp for the 21st as well as getting a room at Ronald McDonald House)!
Kara
Thursday, April 23, 2009. Riley Hospital
preschool of her medical 'issues'. They said that won't be a problem;
in fact, one of the ladies said her mom has a colostomy. That makes me
feel better! She'll only be going one day a week for 2.5 hrs, but it's
a start. It's a mixed class for 2-5 yr olds at a Methodist church. Two
people (including one of Ellie's therapists) recommended it to us; when
I mentioned it to a lady at the Covered Bridge Special Ed offices, she
said unprompted that it was a 'good one'. So we feel pretty good about
sending her there.We are also (still) trying to get her next two surgeries scheduled. They will both involve plastic surgery, so it may take a while. Ellie will have a skin expander put in on her right side. When they're done filling it up, she'll have another surgery to remove the old skin graft on her tummy, put gortex mesh in over her hernia, and cover all of that over with the expanded skin. It may mean another Christmas in the hospital; we'll see.
As far as development is concerned, she is a regular 3-year-old. She loves going to church and to the pet stores to see all of the animals and to the library. Soon, her bedroom will receive a 'big girl' makeover, i.e. fresh paint and a twin bed to replace her toddler bed. Well, Ellie wants to type something.
Here's Ellie:
ellies0i9xaixsasa9ssssssssss98sa8s908fcc-[ekborpsor4[pbpeoprroerpoe4rpp;rto;lp
rpotgiggpirpiiifirottoitoigitti6igfifffg,vfigtortitkitibif
lwifwddvoeieufeiuruuuuuirvufukrruuurivtriojfjklfjk;j;ltlktlklkk
llobtfggokfgvgikgibmommrrgjgguirh7hfhdfb8ggg7hvghvh7uh8hh7
vydvhdhcdnunvncjjckikvlucilrvevnrseoeivruuhvrijvjkvrbtjjn
k j nenib uunibjiivwe nh buvhnfh b hijklmtjkm,bgfmkjiomnjtlmvf,vf
That was interesting. Hope you all are doing well. God bless!
Kara
Friday, January 2, 2009.
Last weekend was exciting. Ellie went to the ER on Sunday for tummy pain; turned out she has a 1.6 cm kidney stone that has traveled to her bladder. She also had pneumatosis, or gas in the intestinal wall, which indicates an infection. So after 11.5 hrs in the ER, we were sent home with a prescription and orders to return if things got worse. I called her usual urologist and he's going to refer us to one of his partners who works on stone removals. They're supposed to schedule her surgery on Monday (not 'for' Monday), so we're hoping the surgery will be sometime next week. She also now has a slight fever and brown urine. (I know, TMI.) We just hope we won't have to rush her back. She also has a UTI (urinary tract infection) so she's on meds for that also. We'll keep you all posted as info becomes available. Please pray for her and her doctors/nurses. Thanks!
Kara
Tuesday, February 3, 2009.
Ellie came out of the stone
surgery fine, as most of you know. She didn't have to have an incision,
so that was a blessing. She had a catheter for 2 days and I took it out
(with Grandma Z's help).
We also went back to the Riley ER (for the third time) for abdominal pain. The general surgeon we saw seems to think there might be a small flap of intestine behind her stomal opening that is blocking the poo, hence the big tummy and pain. She sent us home with a catheter I can put in her stoma to drain the poo. Fun! This management is only temporary until she can see her surgeon and get testing to determine what to do next.
Thirdly, we have her next surgeries scheduled; Feb. 11, Ellie's plastic surgeon will insert a tissue expander on her right side, only an overnight stay. Then, for the following 6 weeks or so, we'll be going to Riley weekly to have more saline put in the expander, gradually stretching the skin. On April 21 (we hope), she'll have the expander out and her general surgeon and plastic surgeon will close up her tummy muscles as much as they can, take out her skin graft and pull over her expanded skin to cover. Should be interesting.
So right now, Ellie is doing well. Please keep those prayers coming!
Kara
We also went back to the Riley ER (for the third time) for abdominal pain. The general surgeon we saw seems to think there might be a small flap of intestine behind her stomal opening that is blocking the poo, hence the big tummy and pain. She sent us home with a catheter I can put in her stoma to drain the poo. Fun! This management is only temporary until she can see her surgeon and get testing to determine what to do next.
Thirdly, we have her next surgeries scheduled; Feb. 11, Ellie's plastic surgeon will insert a tissue expander on her right side, only an overnight stay. Then, for the following 6 weeks or so, we'll be going to Riley weekly to have more saline put in the expander, gradually stretching the skin. On April 21 (we hope), she'll have the expander out and her general surgeon and plastic surgeon will close up her tummy muscles as much as they can, take out her skin graft and pull over her expanded skin to cover. Should be interesting.
So right now, Ellie is doing well. Please keep those prayers coming!
Kara
Saturday, February 14,
2009.
Surgery went well. The doc
inserted one large expander on her right side. She's still in a little
pain, but doesn't complain much; she just says it feels weird. We go
back Thursday to have our first return visit.
We also saw Ellie's general surgeon on Friday. He had a barium enema done on her and x-rays. It showed no stricture or stoma problems. He did say that because she has no abdominal muscles, her intestine has dilated uncontrollably. This has caused pooling of stool just before the stoma (exit). The only thing that can push it out is the pressure (which is causing Ellie's tummy pains) from backed-up food. So we're going to continue the routine colon irrigations. The doc also gave me some more tips for irrigation to make it more comfortable (tolerable) for Ellie and to help receive the maximum output, if you get my drift.
We see her urologist for a routine checkup on Monday, so two trips to Indy (again) this coming week. Please pray for Ellie's continued healing and for safe travels.
Kara
We also saw Ellie's general surgeon on Friday. He had a barium enema done on her and x-rays. It showed no stricture or stoma problems. He did say that because she has no abdominal muscles, her intestine has dilated uncontrollably. This has caused pooling of stool just before the stoma (exit). The only thing that can push it out is the pressure (which is causing Ellie's tummy pains) from backed-up food. So we're going to continue the routine colon irrigations. The doc also gave me some more tips for irrigation to make it more comfortable (tolerable) for Ellie and to help receive the maximum output, if you get my drift.
We see her urologist for a routine checkup on Monday, so two trips to Indy (again) this coming week. Please pray for Ellie's continued healing and for safe travels.
Kara
Thursday, February 26,
2009
She's made it through the
first two 'fill-ups' of her skin expander; now she has two weeks of
rest. Boy does she get mad after she wakes up! Just screams in anger.
But she settles down pretty quickly. Each one seems to be better.
Her bowel problems are being successfully managed with routine irrigations. Fun, fun, fun! Actually, once I got the routine down, it became pretty 'normal' for us, just like changing her colostomy bag.
For now, she's comfortable and VERY looking forward to her birthday party (coming up next month). Please keep us in your prayers, and thank you for visiting!
Kara
Her bowel problems are being successfully managed with routine irrigations. Fun, fun, fun! Actually, once I got the routine down, it became pretty 'normal' for us, just like changing her colostomy bag.
For now, she's comfortable and VERY looking forward to her birthday party (coming up next month). Please keep us in your prayers, and thank you for visiting!
Kara
Saturday, April 11, 2009
Howdy! Ellie's 4th birthday party went great; we had about 10 other kiddos here at the house. Super crazy, but super fun!
Anyway, her fill-ups have been going as planned; a bit of pain afterword, but she's up and running around by the end of the day. Now we're just waiting until the 21st when she has the expander taken out and her tummy fixed. I'll update again at that time. Thanks a bunch, and keep those prayers coming (esp for the 21st as well as getting a room at Ronald McDonald House)!
Kara
Thursday, April 23, 2009. Riley Hospital
First, we want to thank
everyone for the prayers. Ellie came through the surgery
well; we hope to go home tomorrow. (I'm writing this from the
activity room on her floor.) She's not hooked up to the IV
anymore and is eating regular foods, as well as pooing. It's
a bit of a challenge getting her pain under control as well as getting
her up and about, but we're getting there.
She's eating lunch right now (mashed potatoes and grilled cheese) and we plan on attending a puppet show this afternoon. The drain she has in her side should come out today or early tomorrow. Her tummy looks soooo flat, and she has a vertical incision from the bottom of her breastbone down to just abover her pubic bone. (It kind of looks like a heart surgery scar, except its over her abdomen, not her chest.) Her favorite words right now are "Owie" and "Mommy". I'm sure that will change soon enough.
Well, I've gotta go see how her lunch is doing and how much Jer has dumped on her :). Thanks for visiting, and I'll post again shortly after we return home.
Kara
Thursday, Aprill 30, 2009.
She's eating lunch right now (mashed potatoes and grilled cheese) and we plan on attending a puppet show this afternoon. The drain she has in her side should come out today or early tomorrow. Her tummy looks soooo flat, and she has a vertical incision from the bottom of her breastbone down to just abover her pubic bone. (It kind of looks like a heart surgery scar, except its over her abdomen, not her chest.) Her favorite words right now are "Owie" and "Mommy". I'm sure that will change soon enough.
Well, I've gotta go see how her lunch is doing and how much Jer has dumped on her :). Thanks for visiting, and I'll post again shortly after we return home.
Kara
Thursday, Aprill 30, 2009.
Ellie is doing very well 10
days post op. She had surgical glue on her incision; it has
already peeled off and her incision looks great. She is also
complaining less and less every day; we're in the process of weaning
her off Morphine. She had her drain taken out on Monday; oh
boy, she didn't like that! It's not like we could have left
that in there, though. She's also eating more, which is very
welcomed. All in all, it was a very successful
procedure. Now (hopefully) we get a year-long
break. Whew.
Kara
Kara
Thursday, December 3,
2009.
Ellie visited Dr. Rink at
Riley on Monday; we found out her next surgery will be on April 8,
2010. This will be the big one, to make her "bladder
continent" and dry. No more diapers after this one!
He said the surgery will be at least 9 hrs long and she'll be in the
hospital for at least 10 days post op. She's his only patient
for that day, needless to say. We have to be at the hospital
the day before (April 7) to clean out her bowels. I'm just
glad the surgery's not right before her birthday (March 26) so she
won't be miserable for it.
Other than this upcoming surgery, she's doing really well. The recovery from her last surgery went quickly; hopefully this next surgery will go as well. Dr. Rink had an ultrasound done on her kidneys as well as a pelvic x-ray; everything looks good. She does have a bit of fluid in one of her kidneys, but he wasn't concerned about it. Ellie will have to have more testing done before her surgery to determine the size and function of her bladder, so one more trip to Riley between now and surgery.
Thanks so much for reading her update, and keep those prayers coming!
Kara
Monday, December 20, 2010.
Other than this upcoming surgery, she's doing really well. The recovery from her last surgery went quickly; hopefully this next surgery will go as well. Dr. Rink had an ultrasound done on her kidneys as well as a pelvic x-ray; everything looks good. She does have a bit of fluid in one of her kidneys, but he wasn't concerned about it. Ellie will have to have more testing done before her surgery to determine the size and function of her bladder, so one more trip to Riley between now and surgery.
Thanks so much for reading her update, and keep those prayers coming!
Kara
Monday, December 20, 2010.
Boy; it's been a long
time! Most of you have been keeping up with us on Facebook
and know that Ellie still has not had her Monti surgery. She
is now down to a maintenance dose of iron for her anemia and she is
growing bigger and stronger every day. She enjoys
Kindergarten a lot and is already reading like a pro! Please
feel free to email me at kwynn at ma.rr.com if you have any questions
or would like to chat. Have a blessed Christmas and a
fruitful New Year!