Follow up UPDATE ...

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 ...

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 ...

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 ...

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 ...

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) ...

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. =)