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
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
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
(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
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
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
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
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
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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
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
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
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..JPG)
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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. =)
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
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
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
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
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
(*here is a picture of Sydney when she was first getting out of bed -- ready to walk for the first time since the surgery.)
Sydney says, "Thanks!" to everyone that is thinking about her & praying for her.
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
(Here is Sydney in the waiting area about to go back for her surgery. )
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
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
"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
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)
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
Take a look at the "slide" show on the right ... we just added some photos of Sydney (and Spencer).
Thanks!
-A4
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
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
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
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
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"
