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
