Sydney's Back Surgery ...

Out with the old ... in with the NEW

2012-01-11T00:35:00.003-05:00

Device that is. Sydney now has a new device in her back. Her doctor took out the VEPTR device that has been in her back to correct her scoiliosis. The is actually her 3rd device. She initially got a VEPTR on June 20, 2007. She had 'outgrown' that one and receive a new VEPTR because of her growth. The VEPTR system was in her back for just over 4 1/2 years. The device that she has now goes from her low back vertebrae up to her mid-back vertebrae. Attached is a picture of her old device. CRAZY, huh?!? Those are some very BIG screws. Just think, she now has 4 new screws, 4 new hooks, and 2 new bars in her back.
She is still recovering. Slowly but surely, she is getting better each day.

Until next time,
-A4

Yummy, yummy ... for my TUMMY!

2011-05-26T19:23:00.002-04:00

I just LOVE ice cream! I like brownies even more. Above is the BEST of both worlds. Here I am hanging out with my family and some friends after a BEACH day!

Love Ya!
-SYD

Chillin'

2011-05-20T00:05:00.002-04:00

Here is a pic of me and my Uncle Bob. We're just soaking up the sun on the intracoastal for a late lunch after a day at the beach.

Love-n-Laughs,
SYD

Rubber Food!!!

2011-05-04T22:23:00.003-04:00

Oh, how I LOVE "rubber food"! Well they are actually erasers, but regardless I love them. I've got ice cream cones, hamburgers, pies, and cake. It's not only food -- there are frying pans, brushes & combs, flowers ... you name it, I probably have it. But I could always use more - LOL.

Anyways, here is a picture of me in Japan (at Disney Epcot) and I'm in front of one of the rubber food displays. I got to buy a bunch on this trip back in 2009. I think it was spring break. It was soooooo much FUN!

I love me some rubber food! Gosh, look at dat gap in dem teef!
-SYD

Happy Monday!!!

2011-05-02T10:56:00.003-04:00

Whew, what a weekend! We were out of town for a baseball tournament that my brother was in. We were in POOLER, GA ... for those of you that don't know, it's just west of Savannah. We got to go into historic downtown Savannah -- whoa, some of them roads are really bumpy. We ate right on the water. I had fish sticks, it's not like what mom makes for me at home. It's because it was "real fish" and it was fresh. Not the Gorton's ones that I'm used too - LOL. We also walked around and went to a bunch of shops and parks. We even rode around downtown in a horse drawn carriage ... just like William and Kate. We finished it all off with a yummy cookies-n-cream milkshake.

Here's a picture of me in front of a fountain outside the restaurant we ate at.

Have a great week!
-Sydney

Back to School ...

2011-04-26T06:43:00.002-04:00

UGH! After a 4-day loooooooooong weekend ...it's back to school today.

Not looking forward to it. Maybe I should jump in the tub and get a bath?!?

I'm still trying to wake up.
-Syd

Happy Monday!

2011-04-25T07:35:00.002-04:00

Yeah, another day off of school! We were out pretty late last night with some friends, so I'm glad I get to sleep in.

I think I'm going to go to the BEACH today. I think it's supposed to be really sunny and really nice today. We were at the beach on Saturday. We found sharks teeth, went swimming and boogie boarding, and my favorite -- we built sandcastles and played in the sand. We'll see what today brings.

Oh yeah, above is a picture of me and my beautiful sequin dress that I got for easter. Don't you just love it?!? I know I do.

Have a GREAT Monday!

-SYD

HAPPY EASTER!!!

2011-04-24T06:38:00.002-04:00

Hey All!

I'm so excited. The Easter Bunny got my the most beautiful sequined dress ... I'll post a picture of it later. And I got Justin Bieber's "Never Say Never REMIXES" CD. YEAH!!! I was hoping for his movie, maybe next time.

Well, I hope everyone has a GREAT day! Off to church soon and then lunch and more EGG HUNTING. Yipee!

Peace,
-Syd

Easter Weekend!!!

2011-04-23T23:14:00.003-04:00

Hey everyone!

I hope you have had a Happy Easter Weekend. I've had a great time today ... I got to play some games, egg hunt, did some face painting (well, actually arm painting), and finally ended up at the beach.

I have to put out some carrots for the Easter Bunny! Do you think she wants some ranch dressing with those carrots?!? That's how I like 'em.

Love & Laughs,
-Syd

Happy "Good Friday"!!!

2011-04-22T07:47:00.002-04:00

Yeah, no school TODAY!

I got to stay up late and sleep in today. Also, I'm ready for the EASTER holiday.

Can't wait to go easter egg hunting.

I hope everyone has a safe & happy easter!

-Syd

It's been awhile ...

2011-04-19T20:29:00.003-04:00

Hey everyone - I know that it has been a loooooooooong time since the last post. We actually came across some of Sydney's outfits from when she was a baby. One in particular was her outfit that she came home in from the hospital. 6lbs, 1oz.
We're just amazed at how much our little girl has grown.

Love-n-Laughs,
-A4

Here I am going home ...

2009-12-06T20:35:00.002-05:00

Above is a picture of me getting "wheeled" out of the hospital. Been taking it easy at home all weekend. Again, I'd rather go home and recover ... even though I still feel bad and hurt, I'd rather be at home than the hospital. I even got to catch up on some of my favorite shows -- iCarly, Taylor Swift videos, etc.

Love & Laughs!
-Syd

Sydney at her VEPTR surgery ...

2009-12-04T21:11:00.002-05:00

Here is a picture of Sydney right before she went back for her 8th back surgery. We are back at home now recovering and everything has been okay, except she has been a little sick -- we think it's just her body still coming off of some of the anesthesia and that she still is taking some pain medication (which may have caused the nausea).

Anyways, she is finally asleep and will get some much needed rest.

Thank you again to everyone for the comments, emails, phone calls, visits at the hospital & the house!!!

HUGS!
-A4

Back home ...

2009-12-04T19:04:00.002-05:00

Sydney is back home now. She was the first case this morning and she was recovering well enough that we were able to go home. Sydney herself was actually asking to go home and NOT stay in the hospital.

We think the whole allure of staying in the children's hospital has kind of worn off for her. Sydney would rather rest and recover in the comforts of home. Don't get me wrong, the children's hospital is SUCH a great place. They have been so wonderful to Sydney and us during our stays. Also, being at home just reduces the chance for Sydney to catch a cold or worse the H1N1 ... there is so much signage regarding sicknesses and coughing, that we think it's best that if Sydney is able to be at home to recover than possibly expose her to anything at the hospital.

Flipped out ...

2009-12-03T21:53:00.001-05:00

ㄣɐ-
`ǝʌol

˙lol ˙ƃuıʇıɹʍ uʍop ǝpısdn sıɥʇ pɐǝɹ uɐɔ noʎ ǝdoɥ

˙ʇɥƃıupıɯ ɹǝʇɟɐ ʇɐǝ ʇ,uɐɔ ǝɥs ǝsnɐɔǝq `ɹǝɥ uı pooɟ ǝɯos ʇǝƃ oʇ ƃuıoƃ ǝɹ,ǝʍ oslɐ ˙˙˙ sʇuɐʍ ǝɥs sɐ ǝʇɐl sɐ dn ʎɐʇs oʇ ƃuıoƃ sı ǝɥs ˙ɹǝʇndɯoɔ ǝɥʇ uo ƃuıʎɐld puɐ dnǝʞɐɯ uo ƃuıʇʇnd puɐ ɟɟo ƃuıɟooƃ sı ʎǝupʎs

Pre-op day ...

2009-12-02T22:28:00.004-05:00

Today was Sydney's pre-op appointment with her surgeon. Above are the latest x-rays ... you can see the new device that was inserted at her last surgery. This is actually a "generation 2" device. The biggest difference is that this device attaches to two different ribs (you can see the two loops in the TOP photo)... her first device only went around one rib.

Our precious little ANGEL! It is sometimes SO HARD to look at these x-rays and actually "see" her curvature. Sydney is SUCH a trooper -- a lot of folks look at her and can't even tell that anything is even wrong. She has such an amazing spirit for someone who has gone through 8 back surgeries. She plays and acts like other little girls her age, but she is so limited is what she can and can't do. We can't even begin to imagine the daily pain she endures. She is truly an inspiration to us and we can't help but SMILE the way she touches our lives and others around us.

Thanks for checking her blog! Until next time ...
-A4

Naughty or Nice ...

2009-11-30T20:45:00.002-05:00

Have you been naughty or nice?!? Here is Santa and me ... I'm number one on HIS list!

Well, only just a couple more days until the next surgery. We have one more pre-op appointment this week with her surgeon. We hope that Sydney stays healthy and that her lungs stay clear (she also has asthma) for the surgery.

It was a pretty laid back day for Sydney ... as it will be the rest of the week. Just trying to keep her in a little bit of a 'quarantine' until her surgery.

Thanks for your comments. Sydney says, "HELLO!"

-A4

Happy Thanksgiving!!!

2009-11-27T09:57:00.003-05:00

We hope that everyone had a Safe & Happy Thanksgiving!

We have so much to be thankful for: We're thankful for each and every one of your thoughts & prayers. We're thankful for ALL of the comments on the blog (we read each one with Sydney). We're thankful for the team of doctors, nurses and staff at both Nemours and Wolfson Children's Hospital, especially Dr. Loveless and Dr. Sapolsky.

We've got more pics to post soon ... until next time.

Smiles,
-A4

The One to Grow on Ultra Marathon

2009-11-23T20:30:00.002-05:00

Please check out Sydney on the One to Grow on Ultra Marathon website:
http://www.wolfson55.org/sydney_aviles/index.html

Here is their homepage:
http://www.wolfson55.org/index.html

Thanks!
-A4

Jaguars ROAR and Blue Angels event

2009-11-23T19:58:00.003-05:00

Hello everyone!

I know, I know ... it's been awhile. A LONG while at that. So sorry, but I hope to get everyone "up to speed" with some posts.

Above is a picture of Sydney with the ROAR cheerleaders at the Blue Angels event in town. We had an AMAZING time -- she got to meet and get the autographs of EACH of the Blue Angel pilots. They signed her little autograph book, but they also signed her back brace. A couple of the cheerleaders signed it as well.

T-minus less than 2 weeks until her next surgery. We've started to do all of her "pre-op" appointments ... her pediatrician actually said that this is the healthiest she's seen Sydney during this time of year. Yes, the mild weather does help -- but we hope and pray that she continues to stay healthy for this upcoming surgery.

Until next time ...

Love & Laughs,
-A4

Wigs for Kids ...

2009-08-03T22:55:00.004-04:00

Hey everyone!

Here is a picture of me right before my last surgery. I got my HAIR CUT ... can you believe it?!?!? My mom & dad say it looks "really good". I think I kinda like it. The BEST thing is when I get my hair brushed, it doesn't hurt ... not one BIT.

Well I'm back at home now and just taking it easy and trying to recover. I've had lots of phone calls, emails, gifts, etc. Thanks so much to everyone!!!

I'm feeling better, but obviously still recovering. I'll try to send out another post soon to keep everyone up-to-date.

Love-n-laughs,
-Syd

Surgery bound ...

2009-07-29T21:27:00.002-04:00

We saw Sydney's doctor and we knew what he was going to say before he even opened his mouth -- "Sydney's needs to have surgery". She is supposed to go in on Friday, which also happens to be her birthday. She was quite upset when we told her -- not sure if it was because of the surgery OR because she wouldn't be able to have a party on her special day. We'll have to postpone any party plans for a future date.

She is supposed to see an anesthesiologist tomorrow, but not for certain.

Please keep Sydney (and us) in your thoughts and prayers!

Love & Laughs,
-A4

We are anxious to see her back surgeon tomorrow morning ...

2009-07-28T22:52:00.003-04:00

The picture above is what the top portion (the superior cradle) of the device is supposed to do. You can see that the device is supposed to encircle the rib ... well Sydney's implant has broken through the rib.

We see her back surgeon tomorrow morning and we're anxious to see what his prognosis is going to be. We think she will have to have another surgery to get the device back onto another rib and to also possibly fix the broken rib that she currently has.

Wish us luck. We'll keep everyone posted.

Take care,
-A4

Doing okay ... at least right now

2009-07-26T19:07:00.003-04:00

Hey everyone!

Just wanted to write a quick update on Sydney. She's had a pretty good weekend ... still has her bouts of pain, but otherwise doing okay.

We've been letting her just take it really easy and trying to keep it pretty "low key". We are wanting her to get her rest, so she has really slept in on both days.

Thanks for all of the friends that have come by to see her. And even more thanks for the all of the gifts. They have definitely helped take her mind off of the pain for a bit and have helped brighten her day.

I guess that's all for now -- we'll keep everyone posted soon.

Take care,
-A4

Back home from the EMERGENCY ROOM ...

2009-07-24T00:57:00.002-04:00

Sydney and Karen are back at home from the emergency room. Sydney had a lot of nausea & vomiting this evening. She was very lethargic, her eyes were swollen and seemed pretty unresponsive. Thank god auntie Carole was there to help at the house & at the hospital.

She had a vasovagal response (nausea, vomiting, could even have seizures, etc.) to the pain from the failed device in her back. She is at home, but she is still not feeling too well. Please continue to keep them in your thoughts and prayers. Pray that Sydney will start to feel better. She has been through SO MUCH already ... as a parent you just wish you could take away ALL of the pain.

In Christ's Love,
-A4

Device failure ...

2009-07-24T00:49:00.002-04:00

Just wanted to re-cap the last couple of days for everyone ...

On Saturday morning, Sydney's bar "failed". It broke through the two ribs at the top portion of the device. The bottom part of the device is screwed into two lumber vertebrae. There is a prominent "bump" on the upper right part of Sydney's back. She is obviously in a lot of pain, but also does have her good moments. To top in all off, her back surgeon is out of the country until next week. We did see another doctor at his office, but said that he really couldn't do anything and that we would have to wait until her doctor comes in next week.

Also her asthma has been acting up, so we went to see her pediatrician and got some steroids to help with the coughing & wheezing (which obviously made the pain worse).

Until next time,
-A4

Happy summer ...

2008-07-08T20:30:00.002-04:00

Here I am at Ollie Koala's ... having FUN!

I hope that everyone is having a good summer!

Love & Laughs,
-Sydney

Happy 4th of July!!!

2008-07-04T06:29:00.001-04:00

We hope everyone has a FUN and SAFE 4th of July weekend!

Take care,
-A4

I'm doing "good" ...

2008-06-24T07:03:00.002-04:00

When we ask Sydney how she's doing, she says "good". She seems to be doing okay ... it has been about 11 days since her surgery and she continues to heal and recover. She still has some of the steri-strips on her back, although one or two of them have come off because she can take baths and showers again.

Sydney is actually in a summer session of school ... which just absolutely amazes us. She started last week (about 5 days post-op) and seems to have a great loving and caring teacher. Since she has missed a good bit of school last year (because of her other surgeries, doctor's appointments, etc.), this will hopefully help her be better prepared for next year.

Thank you to ALL that are checking her blog. Please remember that we read the "comments" to Sydney, so all are appreciated.

Take care of yourselves and the ones you love!
-A4

X-ray of Sydney's back (before) ...

2008-06-19T06:13:00.004-04:00

Here is a copy of Sydney's x-ray from her pre-op appointment last week. They have gone "digital" ... so now we get a paper print out of her x-rays. The picture is not as clear as the past ones ... they used to put her x-rays on the BIG "light box" in the exam rooms and WE would take photos with our digital camera. Oh well, we hope to get some better quality ones next time.

Sydney continues to get better and better each day. We just took all of her "dressings" and "gauze" off of her back the other night .. she just has about 10-12 steri-strips (kind of like band-aids) over the incision area on her back. She itches like crazy ... one - she has really sensitive skin (i.e., eczema, allergies, etc.) AND two - I can't imagine her body is just trying to 'heal' itself again.

Again, thanks to all for your thoughts, prayers and comments.

Hugs and Kisses to ALL,
-A4

Back home ...

2008-06-14T14:09:00.002-04:00

Sydney is back home recovering. She was actually discharged yesterday afternoon after doing so well in the hospital. Her surgeon said that everything went as expected -- they were able to go in and lengthen the device. He was also trying to "bend" the bottom piece of the device (where it is screwed into two vertebrae in her low back) ... he initially had to bend it because he had to use the screws versus the typical anchors that the bar usually uses. Instead of bending the bar straighter like he wanted, he replaced the entire bottom piece of the device (*we don't have a copy of the newest x-rays, but will update once we get it).

All in all, the procedure went fairly quickly ... it was blocked for two hours, but a lot of that time is for prep before and after and not necessarily for the actual surgery. Sydney has recovered quite well. She does complain of the pain in her back (which is to be expected), but the good thing we are so thankful for is that she has not had the normal side-effects of coming off of the anesthesia (i.e., vomiting, dizziness, etc.).

We're still taking it pretty easy ... it's deceiving because she "looks" so good and seems to be recovering very well, but we know that Sydney needs to take it easy and use the next couple of days to continue to recover.

Thanks again to ALL for your thoughts and prayers!
-A4

I love blueberries ...

2008-06-14T13:59:00.003-04:00

Thank you "auntie" Tricia for my very OWN blueberry plant! I just absolutely LOVE it. I go out every day and check for "ripe" ones that I can pick off and eat right then and there.

um-um yummy ... for my tummy

Hugs and Kisses,
-Syd

One more day ...

2008-06-12T07:06:00.002-04:00

Hey everyone!

We've done some "pre-op" appointments this week to get ready for Sydney's surgery this Friday. Her pediatrician said that Sydney looks really good and healthy and hasn't seen her look this "well" in awhile. Her surgeon said yesterday that he will be going to lengthen the device and also straighten the bar ... when he initially placed the device in Sydney's back, he had to bend the bar a little because he had to use screws to "anchor" the bottom part of the bar to two lumbar vertebrae.

We may have to stay the night in the children's hospital depending on how well Sydney is recovering. Last time, we ended up going home late in the evening. I think it is just easier for her (and us) to be in the comforts of HOME. No beeping machines going off, no flashing lights, and no nurses coming in to check her blood pressure and temperature in the middle of the night.

We're hoping for the best and a quick and speedy recovery.

Thank you ALL for your thoughts and prayers!
- A4

"My back hurts ..."

2008-02-11T08:49:00.000-05:00

Our immediate thought is "Oh no!" ... there have been a couple of these moments since Sydney has been home from her last surgery. She may twist or torque her back while she's trying to get comfortable in her sleep OR just playing around the house she'll move wrong and have some pain.

Sydney is a strong, strong girl. We constantly say that "kids are sooooo resilient", on top of that, Sydney just has such a high pain tolerance. We are AMAZED daily of what she goes through -- thank you for your continued thoughts and prayers.

Love & Laughs,
-A4

Back at Home ...

2008-01-30T09:06:00.000-05:00

Sydney is back at home recovering. She is in some pain, so please keep her in your thoughts.

Sydney's surgeon said that everything went pretty well. He originally thought that he could use an existing scar for the surgery, but ended up having to make a new incision. He lengthened the bar by three holes he held up his forefinger and thumb - looked like about an inch or so in length). The surgeon also tried to straighten the bar, but was unsuccessful - maybe within the next one or two surgeries.

We don't know to what extent the "degree" of her back has changed - the flouro machine that they used does not provide a big enough "picture" for him to take those measurements. We'll have to wait for her follow up appointment in about a month when she gets some new x-rays taken.

Thanks for everyone's prayers. We're hoping for a speedy recovery.

-A4

Sydney's Back Surgery Cancelled ...

2007-12-19T17:58:00.000-05:00

Hey all,

Sydney's surgery that was scheduled for this Friday, December 21st has been CANCELLED. Sydney is wheezing & coughing a little bit ... her lungs are supposed to be 'clear' for at least two weeks before surgery.

Thank you everyone for your continued prayers!

We'll keep you posted.
-A4

Merry Christmas!!!

2007-12-11T08:38:00.000-05:00

Ho! Ho! Ho! Merry Christmas!

-A4

Outfit #2 ...

2007-12-05T21:50:00.001-05:00

Hey all!

Here is the second outfit that Sydney wore at the Fashion Show. WOW! What an amazing afternoon! We feel very privileged to be part of such a fantastic event.

I can't even begin try to capture the emotions of the event. You could see the radiant joy not only from the kids on stage, but from the entire audience. I was smiling ear to ear ... shear happiness for each kid. But on the inside, your heart just ached. It ached like you wouldn't believe. Each child had a story, some very apparent, others not quite as much. Every one of them had overcome or was in the process of overcoming their hardship. From a child with Down Syndrome, or one with a congenital disorder, heart/lung disease, or another with a traumatic injury ... my heart was amazed at how their families did it day-in and day-out. I was more in AWE at each and every child on stage. Each one of them is a "HERO" in my eyes. God has given them great courage and strength to get through what they've had to endure.

We are so blessed to have this Children's hospital right here in our own "backyard". Sydney's surgeon, Dr. Loveless, is a very talented, caring and special person. He is as good as they get - "Thanks Doc!"

Big 'hugs' & 'kisses' to all,
-A4

Belles and Beaus Fashion Show ...

2007-12-03T22:16:00.001-05:00

Hello everyone!

Here is just one of my photos of at the Fashion Show from this past Saturday. This was my first outfit that I showcased down the "runway". I really, really had a lot of FUN. I was so excited for the show and was glad that so many family & friends were there to watch me. I would like to thank Ms. Nancy for 'sponsoring' the tickets to the show. Also for the following who came to support me at the show: Missy V, Ms. Pat (& friend), Nana, Audrey, Aejah, Vance, Brett, Ms. Leslie, Mary Jean, Mr. Tom, Ricky, Sarah, Hannah, Ila, Savannah, Ms. Carolyn, Sally Jane, Ms. Debbie and of course Mom, Dad & Spencer.

I have more pictures from the show ... I'll have to tell my mom and dad to put them on the blog.

Love & Laughs,

Sydney

2007-11-28T22:25:00.000-05:00

(Elizabeth Swann & Jack Sparrow from "Pirates of the Caribbean")

Just an update ... Sydney has another surgery in mid-December. The main goal of the surgery is to lengthen the VEPTR device in her back. She has actually had a growth spurt and the device needs to be adjusted to accommodate for her growth (there were some days where she was sleeping for 12-14 hours & just eating non-stop). The surgery will last about 2 hours and the surgeon has told us to plan for at least one night in the hospital.

Sydney has such an amazing attitude ... even though her surgery will be very close to Christmas, she is in such good spirits.

Thanks for checking up on Sydney! We'll try to keep posting more frequently.

-A4

It's fall ...

2007-11-12T22:59:00.000-05:00

Thanks for checking up on Sydney. All has been well ... but she will have to go back in for another surgery in December. She has had a growth spurt and this surgery is to specifically lengthen the device in her back. We'll keep everyone posted.

Here's a recent photo at the pumpkin patch.

Take care!
-A4

"It's been awhile ... "

2007-09-16T21:45:00.000-04:00

that's what someone told me the other day. I know and I apologize ... we haven't posted anything for awhile -- 18 days to be exact. Also, it's been just over 4 weeks since her last surgery.

Here are some details from our last meeting with her surgeon -- basically she has been "excused" from P.E. class for the next year. She is not supposed to do anything that she has a risk of "falling" (i.e., swings, slides, monkey bars, biking, etc.). Luckily we have a great teacher and she has been able to "modify" some things for Sydney ... she has a box of magnet toys, dolls, legos, etc. that she can play with while the other kids are on the playground. Usually the teacher has to limit the amount of kids that Sydney has around her because it seems like a lot of her friends (especially the girls) would rather play with her and "keep her company" than run around on the playground.

Anyways, she has been going to school without missing a beat. We would like to get her involved in some extracurricular activity, but of course we can't do the things that most little girls want to do (like gymnastics, dance, etc.). Any ideas?!?

Sydney continues to be a STRONG little girl. She never complains about her back and amazes us day-in and day-out.

Thank you for the never ending support!
-A4

Follow up UPDATE ...

2007-08-28T09:14:00.000-04:00

Here is one of the x-rays of Sydney's back ... we forgot our "real" camera, so this came from my palm pilot (not the best quality). Anyways, you can see the two screws that the surgeon used to replace the "hook" on the device. We initially thought that they were maybe 5mm long ... as you can see, they are longer than that -- A LOT longer than we thought. They are about 25mm or about an inch long.

She got the "green light" to go swimming again and she got her first real bath last night (she'll tell you how much she doesn't like the "sponge bath").

This is just a short post for now ... we'll post again with more details.

Thanks again for all of the LOVE and SUPPORT!
-A4

Monday update #1 ...

2007-08-27T08:16:00.001-04:00

Good morning everyone!

Here is a picture of Sydney at the back of a sailboat (the "stern" in boating lingo). We recently took a "sailboat tour" and she loved hanging out in this chair. She also helped steer the boat ... but we'll spare you that photo.

Basically today we go back to see her surgeon for a "follow up". For some reason we thought that the appointment was this morning -- it's not until later this afternoon. We'll keep everyone up to date with another post later on today.

Have a great Monday! See you soon!
-A4

My first day of Kindergarten ...

2007-08-20T23:41:00.001-04:00

Today was Sydney's BIG day ... her first day of "real" school (kindergarten)! She was soooooo excited. She couldn't wait to get there -- she actually ran in ahead of us into her classroom. Her teacher is absolutely AMAZING! They are going to have a wonderful school year.

Yes, we know, it hasn't even been a week and she is at school. We didn't know what to expect, but you know what (we've said it before and we'll say it again)-- kids are so resilient. If it were one of us, we'd be laid up in bed for weeks. We had come to the decision that she should have a "modified" week ... basically leave school just after lunch. Well when Karen went to school to pick her up as planned, she didn't want anything to do with it. Sydney wanted to stay and school and there was no telling her different. She ended up staying for the full day -- she did great! We thought that she would have been so tired from the long day, but she was like the energizer bunny ... she kept going and going and going. Everyone else in the family was ready for bed, while she still wanted to play and read books and anything else to keep her from staying in her bed -- geez, what's in that pain medicine?!? Maybe I should take some of that, LOL.

We are so proud of our little girl. She has once again done so great (without complaint) with her recovery. It is so amazing that she has gone through this, not once, but twice within 3 and 1/2 weeks. Sure, there were tough times, but she has really not complained or whined at all ...we've not had to "baby" her or "wait" on her hand or foot.

We are still just starting out in this long journey. She has many more clinic visits, doctor's appointments, x-rays, and more surgeries coming. We appreciate all of your prayers as we take this "one day at a time".

In Christ's love,
-A4

Two weeks until ...

2007-08-17T01:00:00.000-04:00

Here's a photo of Sydney and "big bro" Spencer at the pool ... she got her 'fill' of swimming at the beach, pool and hot tub before she had to go in for surgery last Tuesday. Because of her incision, it will be two weeks until she can swim again ... and the bad thing about it -- she just got 3 invitations for birthday pool parties for this upcoming week.

If you didn't know already, Sydney is back at home recovering. We hope that she has a speedy and healthy recovery -- she will be starting school next week. She can't wait (and neither can we).

Sydney had a pretty good day today. Her pain levels are less and less as each day goes on. She is starting to get back to her normal self (i.e., playing with her littlest pet shop, webkins, barbies, etc.). We thank GOD for blessing us with our little angel! It is amazing the courage, the strength and the faith that she has! She is our "hero"!

Thank you for keeping Sydney (and us) in your thoughts!

Until next time,
-A4

Round 2 ...

2007-08-15T08:36:00.000-04:00

Good morning ... here is an update on yesterday's events.

We anticipated a shorter surgery than the last (maybe an hour or two). Looking at the x-rays, we thought it was going to be pretty straightforward -- go back in and re-attach the "hook" onto the laminae and have a titanium cable wire around another vertebrae and the device to secure & "anchor" it in place. Once the surgeon was in, he realized that the device had broken through the laminae and that he needed to secure the device through another method (via two screws on the pedicles of two different vertebrae). Well, just like a car - her "parts" weren't in. They had to call UF/Shands and get the screws delivered to Wolfson's. So a 1-2 hour procedure, turned into a 3 1/2 hour surgery.

She had a pretty okay night ... it didn't seem like she is having as many back spasms like the first time around. But this time she has been having a good bit of nausea -- she really hasn't been able to keep much down (it just hurts to see her like that).

Based on how well she does today, we may be able to go home later this afternoon/evening. But seeing how much trouble she has been having with getting sick, we may have to stay another night. We don't want to rush anything, so we're leaving it up to how Sydney is feeling.

Thanks again for all of the thoughts and prayers ... they are very much appreciated.

We'll keep everyone posted.

Take care,
-A4

UPDATE -- Another Surgery (next week) ...

2007-08-06T23:52:00.001-04:00

Hey everyone,

Sorry we haven't posted in about a week ... everything has been going pretty good (so we thought) until her "follow up" appointment with her surgeon today. She had two new x-rays taken (below). You can see on the second x-ray that the "hook" is not on the lumbar vertebrae like it should be.

All of the cases that we've read about, Sydney's doctor has talked about it, we've seen it in literature about the device and the procedure ... the device can "fail". In other words, the VEPTR device could bend, break or move ... it's one of the "risks" of the device. We knew at one point or another that this was going to happen to our little angel. We just didn't think it would be sooooo soon.

Please continue to keep Sydney in your prayers. She is currently scheduled to have her surgery to correct this next Tuesday, August 14th.

With love,
-A4

p.s. At least Sydney's incisions looked great today ... they've healed wonderfully and she got the "thumbs up" from her doctor to go swimming. She's got 7 days until the procedure -- 7 days of swimming. Anyone with a pool need some company?!? Sydney's got her bathing suit and towel ready. =)

Happy Birthday Sydney!!!

2007-07-31T08:02:00.000-04:00

Sydney last night at dinner said the blessing ... she was thankful for the food and for her friends & family, but MOSTLY for her birthday. So here we are - her 6th birthday.

We thank God everyday for our precious little angel. We are amazed at how well her surgery and recovery have gone -- that's a great birthday present in and of itself.

Here's to Sydney -- we hope she has a wonderful birthday and another blessed year!

Take care of yourself & the ones you love,
-A4

It's been one week ...

2007-07-27T08:41:00.000-04:00

Here I am leaving my room at the hospital ... don't you just love the smile on my face. I was sooooo happy that I was going home.

Anyways, it's been one week ago that I had my back surgery. Today I can actually get a shower (I'm really not a big fan of the whole "sponge bath" thing). But still no baths, pools or getting into the ocean -- that should be in a couple of weeks, I can't wait!

I'm still homebound ... maybe this weekend, if I'm feeling okay, we can actually get out of the house for a little bit. I'll try and see if I can get my mom & dad to take me to the "Disney Store", if not, the next best thing -- "Target".

Happy Friday everyone! I hope you have a GREAT day!

Love & Laughs,
Sydney

Yummy Ice Cream ...

2007-07-26T07:45:00.000-04:00

Here I am eating a "snow cone" at home ... I just love the ice cream truck (mom & dad swear that I can hear it miles away). Also, I don't know if you can really see but I have my "back brace" on. I asked my mom & dad to put some "Disney Princess" stickers on it. Usually I have another shirt over it, but it gets "too hot". I got some holes drilled throughout the brace to help with the heat, but because I have to wear a cotton undershirt, it's just still too hot. Also, sometimes when I sit (like in the car) it hurts my back ... I hope my mom & dad can figure something out for that.

Thank you all again for your love and support. I would give each and every one of you a HUG and Kiss if I could (and knowing Sydney, she would).

Love & Laughs,
Sydney

She's back ... well, almost ...

2007-07-25T07:30:00.001-04:00

Here's Sydney walking for the first time in the hospital with her physical therapist ... boy, if you could only see her now.

She went back to the orthopaedics clinic yesterday (Tuesday) to adjust her back brace ... if I didn't mention it before, the brace is something that she has to wear all the time (except for sleeping & in the bath). Also, if you didn't notice the change to the top of her blog (kind of in the title section) -- she has to go back about every 6 months to have her device "expanded". She has two small incisions on her back from the surgery (one at the top part of the device and one at the bottom). They are going to have to make another incision in the middle part of her back (where the clamp for the device is) for the expansion. The device is subcutaneous (right beneath her skin) and you can pretty much feel it if you run your fingers along her back ... we call her our little "bionic girl".

Also, while we were at the clinic, we went ahead and measured her height -- 42 5/8 inches ... she is 1 1/8 inch taller. Yeah!!!

She is doing better ... less and less pain meds (she's the one who actually doesn't like taking them). We see the doctor in a couple of weeks for a "follow up" -- I'll get an updated x-ray of her back and post on the blog then.

Take care,
-A4

We're home ...

2007-07-23T23:41:00.000-04:00

Great news (especially for Sydney, because she's been asking ever since the day after her surgery) ... as of about 6:30 pm on Monday evening, we are home.

Whew! Today was a busy day. Her surgeon came by, then the anesthesia folks, someone from her pediatrician's office stopped to check on her, then physical therapy came by, a couple of visitors stopped in to see her and breakfast was delivered -- all of this before 9am, when Sydney finally woke up.

After breakfast, Sydney put on her 'back brace' (something that she pretty much has to wear all of the time -except for sleeping & bathing) and we went to the "playroom" on her floor. It was a little nerve racking for Karen and I -- her balance was off. Because her back is straighter, her center of gravity has changed ... and because she was still adjusting, she was a little unstable. It was like she was in the V8 commercial where everyone was walking crooked -- if you can imagine Sydney walking like that. She stumbled a couple of times, but Karen and I were watching her like hawks and we were there to catch her. She did manage to fall down once, but luckily she had her brace on. She was also able to work with the physical therapist right before lunch (she was sleeping the first time he came by) ... by this time, she had been walking around & playing for awhile, so she looked pretty stable and more "in tune" with her balance.

This afternoon, Sydney managed to get "18" in ... well, not really. She was invited to participate in "putting for smiles" (something that one of the local PGA pros came in to do with the kids) ... keep an eye out - the FL Times-Union was there and some of the kids may be in the newspaper in a special section in the next couple of weeks. Sydney really, really wanted a medal (believe you me, she would have talked the guy into giving her one if he had an extra one to give her) ... she ended up with a sleeve of golf balls, yeah for daddy -- he's always losing golf balls.

After playing in the playroom for awhile, we thought she needed some "down time" back in her room. By the way, Spencer has been with us the whole day so far. So when we finally got back to Sydney's room, they were already going back and forth - you know, the brother/sister quarrelling act. Meanwhile her surgeon walks in to check on how she's doing, and she's standing on the window bench chasing after her brother. He takes one look at her and realizes how well she was doing and told us we should go home. No, really ... those were his exact words, "go home". There really was no reason why we needed to still be there - her pain levels had decreased, her incisions looked good, physically - she was walking, getting in & out of bed, etc., So, within an hour, we were packed and ready to head home.

Just a couple of minor things: still working on her pain (better, but still good & bad time) and her back brace needs to be adjusted a little. Other than that, she has recovered pretty quickly. A lot quicker than what we had anticipated ... she's already back to shaking those hips & dancing. "She's back" ...

-A4

Sunday Update #2 ...

2007-07-22T23:10:00.000-04:00

(*here is a picture of Sydney when she was first getting out of bed -- ready to walk for the first time since the surgery.)

Here are some updates:

Big KUDOS to Arlene (physical therapist) who helped get Sydney up for the first time in TWO days. She got Sydney out of bed and she was taking some steps.

Another long day ... so sorry about the short post. We'll leave you with this though -- Sydney said "am I taller now?!?" (with her little smile & dimples).

We'll post again tomorrow morning. Thanks for checking on her.

-A4

Sunday July 22 -- Update #1 ...

2007-07-22T09:25:00.000-04:00

Sydney says, "Thanks!" to everyone that is thinking about her & praying for her.

Good morning!

Sydney is watching "Mickey Mouse Clubhouse" right now (we're trying to take her mind off of the pain) ... but, she is still in and out of her pain. Sometimes it's not too bad, other times - well, let's just says it's hard for us to watch her. That is one of the harder things we've had to get through ... it's just so tough when you just see one of your kids in that agony. You just wish you could take any & all of the pain away.

They have adjusted her pain meds a little bit, so hopefully Sydney is able to get more comfortable. Also, we just saw the ortho doctors and they are really pushing for PT to get her up and walking this morning ... we hope so. We think once she gets up and moving she will start to feel much better.

We'll keep everyone posted,
-A4

Saturday Update ...

2007-07-21T22:16:00.000-04:00

Great news! Sydney has been moved from her PICU room to another floor (with other pediatric surgical patients) ... which basically means her recovery is moving along well. She still has a couple of "lines" in (i.e., IV's, oxygen sensor, etc.) -- but hopefully those will come out within the next day or so. Also, we are hoping that someone from physical therapy will come by tomorrow and she can get up and walk around for the first time. They were supposed to stop by her room today, but unfortunately (for some reason or another) they did not.

Sydney is looking better and better, but she still has moments where she seems like she is in a lot of pain (or even some really bad muscle spasms). She is still connected to the morphine pump, but she doesn't like to use it for the pain ... she says it makes her "sleepy".

Anyways, we're going to try and get some much needed rest. She is in and out of sleeping and we should "catch up" during those times.

Sydney sends her love,
-A4

Update #2 ...

2007-07-20T23:48:00.000-04:00

I'm finally able to add another post ...

It has been a long day and I have lots of 'thoughts' running through my head -- let me try to give you an update on Sydney. According to her doctor, her surgery went very well. He started out with one size for the device, but then replaced it with a longer one (he did not anticipate the amount of flexibility in her spine). Basically her curvature went from 85 degrees to about 40 degrees. WOW! One piece of the device is actually attached to a rib in the thoracic (upper back) region, the other piece is attached down in her lumbar (low back) area. He thinks that she should bounce back from her surgery pretty quickly ... instead of an entire week in the hospital, she may only have to be in for a couple of days. He is helping out a fellow physician by doing some rounds tomorrow and should be able to see Sydney and give us an update.

We did have two "scares" with her anesthesia. First, when she was just brought up to PICU and "coming out" of the anesthesia ... she acted out of character (you know when it's not her 'normal' behavior). And again, when she pushed her morphine pump button, she acted out ... she was actually a little uncontrollable and tried to get out of bed. It was hard for us to experience. We both tried to calm her down and nothing, I mean nothing, was helping Sydney out. The nurse finally gave her some valium and she was able to settle down and go to sleep.

They tell us that Physical Therapy may be coming tomorrow to try and get Sydney up and walking. If all looks good, she may get moved to a "regular" room and won't have much longer before she gets to go home.

Sydney is a brave girl. She is so strong and has just been so positive through all of this. She is laughing and making jokes with all of us and the staff. She has such a strong spirit and an amazing "toughness" about her that we just have to sit back and admire.

Thank you for your continued thoughts & prayers!

Hoping for a speedy recovery,

-A4

Friday, July 20th - Update ...

2007-07-20T14:28:00.000-04:00

(Here is Sydney in the waiting area about to go back for her surgery. )

Hey everyone,

Well, after some delay, Sydney was brought back for her surgery. It already has been a long morning, but we know we have a long ways still to go. We started early this morning - Sydney had to do a nebulizer treatment and had to get washed with some antiseptic liquid soap (her skin is bad enough with her eczema, this has really dried it out). Her surgery was initially scheduled for 8am, but after a phone call, it got pushed back to 10:45am. For some reason she actually didn't go back until 1pm. It was sooooo hard, because Sydney (none of us, for that matter) hadn't eaten since yesterday evening ... everyone's stomachs were 'rumbling'. We just got a call from the nurse and she said that Sydney gave them ALL a laugh. They had given her some "meds" to start the anesthesia process ... as they brought her back, we could tell she was starting to get a little 'loopy' ... but as they were preparing her for the surgery, they gave her some headphones and she was just a singing her heart out. =)

They have alloted about 4 hours for the surgery and the nurse is supposed to call us every hour to hour and a half for updates.

We'll do another post in a bit with more updates.

Thank you for your continued thoughts & prayers!

-A4

Tomorrow's the day ...

2007-07-19T23:36:00.000-04:00

The day is finally upon us ... although it's just like any other day for Sydney - I can hear her in her room right now playing & singing. We've kept her up and gave her a really late night snack ... she isn't supposed to have anything to eat after midnight because of the anesthesia. Sydney's gotten all of her meds and we've given her a "breathing treatment" (for her asthma) to keep her lungs nice & clear for the surgery.

Above is her latest x-ray ... 80 degrees. They're not sure what is causing her scoliosis - but if we don't treat it, it will only continue to get worse. We are hoping & praying for a successful procedure. The device Sydney will be getting is something that the doctor hopes she'll have until she's at least 10 years old. Also, she will be having an "outpatient" procedure about every 6 months to adjust (lengthen) the device.

Please continue to keep her (& us) in your prayers. Thanks!
-A4

Perspective ...

2007-07-19T00:07:00.000-04:00

Sometimes you observe those around you and it puts some things into perspective. You quickly realize how "lucky" you really are and understand how things "could be worse".

Try taking a walk through the lobby and through some of the halls at Nemour's (our local Children's Hospital) ... I can't begin to describe how your heart just breaks for each one of those kids. I think that's what makes it even harder -- they're just kids ... so young, so innocent.

I just look at Sydney and realize how BLESSED we are. I don't want to downplay what Sydney is going through, because if this isn't treated, she can have some serious health problems. We are soooooo blessed because we know that God will take care of Sydney and continue to heal her. We are blessed with an AMAZING doctor with some amazing technology. We are blessed with great friends & family.

Hugs,
-A4

80 what?!?

2007-07-18T15:21:00.000-04:00

"Sydney's back is at 80 degrees" ... that is what her orthopaedic physician said. When we told him that we thought her back was at 34 degrees, the doctor looked back at the last x-rays they had done and those were at about 65 degrees. That was almost 8 months ago - so from last December until today, her back has curved another 15 degrees.

We'll post a picture of her x-ray in another entry. Also, more details about her BIG day on Friday ... soon to come.

Regards,
-A4

A couple of days away ...

2007-07-16T07:29:00.000-04:00

Again, thank you for all of the words of encouragement, cards, phone calls, emails, comments, etc. We are soooooooo appreciative of the support.

It's only a couple of days now ... of course Karen and I get more & more nervous. But Sydney, on the other hand, knows that everything is going to be okay. It has made me stop and think -- I should have more of that childlike faith and not worry. Easier said than done ... it's so hard to do when it comes to your child.

Keeping the faith,
-A4

Sydney at Disney (Paige K. - here is the picture we talked about)

One week away ...

2007-07-13T07:29:00.000-04:00

We can't believe that it's only 1 week away from Sydney's surgery. There is a lot of mixed emotions that we are having. On one hand, we are excited that this moment is finally here. Sydney has been through a lot to get to this point ... when we say a lot, we mean A LOT. She is definitely a "trooper". Again, all of the doctor's appointments, therapy, clinic visits, etc. -- it's all part of Sydney's "normal" life. On the other hand, we have a lot of fear and nervous anticipation. Sydney HAS been through a lot, but nothing ever this serious or invasive. If we would, Karen and I would take her place in a heartbeat. It's one of those situations, as a parent, that you don't want to see your child go through.

When we first noticed her scoliosis, she was about 12 degrees. Through the past couple of years, she has progressed to over 34 degrees. We know that this is going to be so helpful to Sydney. Her lung capacity will increase, her back will look more "normal" and she may actually be a couple inches taller. As Sydney says, "my back will go from an 'S' to a number 1 (as she holds up her index finger)".

Thank you for keeping Sydney close to your hearts during these next couple of weeks, especially one week from now during her surgery on Friday, July 20th.

-A4

Just uploaded some pics ...

2007-07-10T00:14:00.000-04:00

Take a look at the "slide" show on the right ... we just added some photos of Sydney (and Spencer).

Thanks!
-A4

Here's some info about Sydney's procedure (VEPTR) ...

2007-07-06T08:41:00.000-04:00

Product Name: Vertical Expandable Prosthetic Titanium Rib (VEPTR)
Manufacturer: Synthes Spine Co.
Address: 1230 Wilson Drive, West Chester, PA 19380
Approval Date: August 23, 2004
Approval Letter: http://www.fda.gov/cdrh/ode/H030009sum.html

What is it?
The Vertical Expandable Prosthetic Titanium Rib (VEPTR) is a surgically implanted device used to treat Thoracic Insufficiency Syndrome (TIS) in pediatric patients. TIS is a congenital condition where severe deformities of the chest, spine, and ribs prevent normal breathing and lung growth and development. The VEPTR device is a curved metal rod that is attached to ribs near the spine using hooks located at both ends of the device. The VEPTR device helps straighten the spine and separate ribs so that the lungs can grow and fill with enough air to breathe. The length of the device can be adjusted as the patient grows.

How does it work?
During surgery, the VEPTR device is adjusted to fit the patient and attached vertically on the patient’s ribs near the spine. Lengthening the device enlarges the rib cage and increases the amount of lung space in the patient’s chest. The VEPTR device will be lengthened or replaced at specific times to allow for the patient’s growth and to further correct spinal or chest wall deformity. Adjustments to the length of the VEPTR device are made during surgery through a small cut (incision) in the patient’s back.

When is it used?
The VEPTR device is used to treat TIS in pediatric patients.

What will it accomplish?
Use of the VEPTR device may result in:
• a more normal growth pattern without spinal growth limitations,
• decreased chest, spine and rib deformity,
• expanded lung volume,
• increased life span,
• decreased dependence on a supplemental air supply,
• increased physical activity capability, and
• improved psycho-social health.

Until next time,
-A4

Hey there ... from Central Florida

2007-07-02T22:11:00.000-04:00

Hi everyone!

I had a pretty busy weekend ... it's really my last time that I can really go out and do anything because I pretty much have to stay somewhat quarantined for the last two weeks. My parents don't want to risk getting me sick. I have to be as healthy as I can be for the surgery.

We went to Disney for my birthday. I got to see a couple of my favorite princesses: Ariel, Cinderella and Aurora. I also saw Stich and Buzz Lightyear. Attached is a picture of me and Ariel.

I also got to see a lot of family this weekend -- we went to Orlando for my cousin RJ's birthday party and we went to lakehouse and saw my relatives from south florida. Here is a picture of me at the lake.

Thanks for checking out my blog and for all of your support!

Love & Laughs,
Sydney

3 weeks away ...

2007-06-29T07:02:00.001-04:00

Sydney's back surgery is only 3 weeks away. We may take her to one of her favorite places (Disney World) to celebrate her birthday a little early ... her other place would be Target (shopping, just like a girl -- she gets that from Karen, of course).

We've gotten questions about how everyone can help. To be honest, we're not sure ... we are going into unchartered territories. Some of you have offered dinners and cards, others have offered to help with Spencer ... we're just glad to have all of the love & support to get through this chapter of Sydney's life.

-A4

Sydney's schedule ...

2007-06-27T18:33:00.000-04:00

Hey everyone!

We've had some folks ask us about Sydney's surgery. There are some links (on the right) that give some info about the actual procedure ... if your curious, check 'em out.

Here is her schedule in the hospital:
Friday, July 20 -- surgery (could last about 6-7 hours)
After that, she is supposed to be in ICU for about 2-3 days and then a regular room for recovery for another 3-4 days.
Every child is different in their recovery, but we've heard that it could be 2 weeks, maybe even 3-4 weeks, for Sydney to get back to "normal".

Sydney knows that she is going to have surgery. She is aware that she will be in the hospital for awhile ... she thinks that she'll have her birthday (July 31) at the hospital (we should be back home by then). Sydney is such a BRAVE little girl and we are so PROUD of her. She has been through a lot for a 5 year old ... she has been to the doctor's office & hospital probably more than we ever have combined in our entire lifetime. Sydney has endured the numerous MRIs, Cat Scans, physical therapy, occupational therapy, speech & language therapy, doctor's appointments, blood tests, specialty doctors, etc. Going to these appointments is part of Sydney's "routine" ... it's all she known.

Thank you again for everyone's continued thoughts and prayers!
-A4

Just getting set up ...

2007-06-25T13:43:00.000-04:00

Hey everyone!

Thanks for checking out Sydney's "blog". With this blog, we hope that we can keep everyone "up to date" on Sydney's surgery (before, during and after). We appreciate everyone's thoughts, prayers and words of encouragement that our family is going to endure during the next couple of weeks.

Until next time ...

All of us -- "A4"