Merry Christmas!

The see everyone look here

Another year...

I can't believe how fast things really happen - today is our 2 year "gotcha" day for Sydney! I find myself reliving every moment spent in China at this time of year. It seems so long ago and at the same time just like yesterday ( I get the feeling that I typed the same thing last year).

Today we had the most beautiful snow! Sydney thinks it's pretty but she wants no part of being in the cold - NONE! So the other kids played and we made snow cream and hot chocolate! Dad fixed chinese food for supper and then we had cake and ice cream! I think she really enjoyed her special day, we sure did!

Sandy

the call....

What a special day - on November 20th, 2006 we recieved our highly anticipated call for TA! It seemed like such a LONG wait and now 2 years have passed in the blink of an eye.

the appt.

Well, we met with the CT surgeon at CCH and let me just say that he EXCEEDED ALL of our expectations! He answered more questions than all of her previous drs combined - well almost. He really seemed to care about Sydney which is such a blessing, so many times drs have started to discuss things right in front of her with no regard as to how it might make her feel.

So on to the visit. He said if the NF1 were not in the picture he WOULD recommend repairing her chest. Not only to help with the scoliosis but to give her heart and lung more room. But of course NF1 IS in the picture and the tumor is very large and involved. So he plans to discuss surgery with all of the other members of the NF team. It may or may not happen. So we still don't have an answer but we do have a dr that we TRUST and that is SO important. I don't know when this meeting will take place. In the meantime Sydney has been scheduled for her next MRI. That will be January 21st.

Thanks again for all of your prayers - please keep them coming.

Blessings,
Sandy

Mark your calendars

Sydney has an appt. with the CT surgeon at CCH Thursday, Nov.13th. This is to evaluate possibly repairing her concave chest in an effort to help reduce her scoliosis. This is NOT a consult to remove the tumor. All of the physicians at UK are in agreement that the risk of ANY kind of surgery would not outweigh any benefit. At this point I'm also in agreement with UK. She is just "perfect". And I don't want to jeopadize that in any way. Please keep her in your prayers. One of the docs there told me "God can fix what we can't". And although it's sad to know that they can't "fix" it, I'm so thankful that she at least has one doctor that still believes in miracles! I will update after Thursday.

Thanks and blessings,
Sandy

Please pray for Papa....

Please say a prayer for Leslie's dad.They have been through so much lately.

just too cute...

a close up of the "lion"

 

Happy Halloween!

 

And we're off....

to celebrate birthdays! Neil and I share a birthday - how cool is that! So we planned our Fall break so we could celebrate! We SO wanted to take a trip to Disney but it was just TOO last minute. We're hoping to go next year. Syd was a little disappointed that she didn't get to see the castle on the Mickey boat. So anyway, we're going to Gatlingburg for a few days! My MIL had lots of hotel points so we got 3 nights for FREE - SWEET!

Blessings and thanks for all the wonderful words of encouragement. I have truly felt your prayers.

Sandy

A flower for you...

 

to thank each and every one of you that has lifted Sydney up in prayer. I am so very grateful for each one of the comments. A few of you asked to post a link to the blog - please feel free to do so - we need all the prayers we can get. I realize that some of you are dealing with your own struggles, please know that I am now praying for you as well.

Please continue to pray for our sweet girl. And again, we are so grateful for your prayers.

Of course, a BIG THANK YOU to Leslie

Blessings,
Sandy

Do not be afraid, just believe and she will be healed.
Luke 8:50

This is who you're praying for....

This is our sweet girl, Sydney! You'd never know in a million years that anything could possibly be wrong. But Sydney has NF1 with a VERY large plexiform tumor. This tumor is around her aorta, her left lung, her trachea, and her spinal cord. She also has a pretty significant concave chest. There is no cure and the only treatment option available is surgery and she is NOT a candidate for surgery. It would be TOO risky for her. As you can see God already has his hand on her. Just look at her...oh my, she's just a doll! Thanks for stopping by and please add her to your prayers.

Blessings,
Sandy

 

 

 

The Pulmonary visit....

We met with the pediatric Pulmonologist today. His bedside manner was good. But he is a Dr. and when a Dr. with his expertice tells you that he's never seen a tumor like this then you realize all over again what a terrible diagnosis this really is. I'm tired and at a loss for words right now. They will have a meeting to discuss Sydney's case in the coming weeks but it is in his opinion that surgery to repair her chest would be too risky for her and could potentially cause more harm than good. So really nothing has changed, just the wording and bedside manner. Sydney continues to do well. I just can't help but to feel sorry for all of us right now. I know that I shouldn't do that - so please keep praying for all of us.....

Blessings,
Sandy

Mooncakes!

We celebrated this year's Moon Festival by making our own mooncakes! They turned out surpisingly well considering this was our 1st batch. Next year we might have to splurge on a nice mold.


soaking the beans

 

making the dough

 

yum!

 

the moon princess!

 

Friday favorites!

Sydney's school pictures!

 

 

 

 

Friday favorite!

just look at those eyes...

 

Here we go - AGAIN

Sydney's appt. with Peds Pulomonary is set. Depending on what his thoughts are, she will probably have a sleep study and then follow up with a CT surgeon. Any thoughts on Peds CT surgeons????? Advice is welcome and prayers are SO appreciated.

Sandy

roller coaster.....

that's what it feels like. We met with the ortho Dr. today and - well - I just don't know where to start????? He said he cannot imagine saying the things he said last year - WHAT?????? Basically we are sort of back at square one. He feels that maybe something could/should be done for the scoliosis. The 1st step is to get a Pulmonary consult and probably a sleep study to evaluate her lung function. The next step is to meet with a thoracic surgeon (we've also done this and he did not recommend surgery) the reason for this consult is to evaluate the possibility of repairing her concave chest. This would hopefully alleviate pressure from the lungs as well as the spine. These are things we were expecting to hear over a year ago. We're just clueless...............Please continue to pray for all of us as we move forward.

a change?

After a great follow up appt. a few weeks ago we have spoken with Sydney's Dr. and there has been a slight increase in her tumor. At 1st I was just devestated but Her WONDERFUL Dr. quickly talked me down. According to the MRI there have been no changes but a more indepth study reveals that the extreior portion of the tumor has increased slightly. She also had an xray that revealed scoliosis (we knew this already). Her Genetics Dr. has requested another consult with Ortho. This appt. is scheduled for August 15th. We met with Ortho last year and he made it VERY clear to us that there was NOTHING he could do for Sydney. But here we go again.....Please keep Sydney and our family in your prayers.

Thanks and blessings,
Sandy

No change.....

Sydney had her 6 month follow up July 11th and both MRIs showed no change from her previous scans! Praise God! She continues to do well and be symptom free - a miracle in itself.

Love,
Sandy

Wordless Wednesday!

Bittersweet....

That's the only way I know how to describe it. Well, here it is - the special announcement. Sydney has been granted a wish . Today was her wish day and she has wished for a trip on the Mickey boat, otherwise known as a Disney cruise! As great, wonderful, exciting, and totally awesome as it is to be granted a wish like this, I really wish that she did NOT qualify......But it is indeed a blessing. The proverbial "silver lining" and for that I am grateful. I'm overwhelmed at the moment because this brings us back to reality and how serious her disease really is. But I am truly excited for Sydney and this wonderful opportunity that she has.

Happy Birthday Sweet Girl!

PRAISE GOD!!!!!!

We heard from Sydney's Dr. a day early - her MRI remains UNCHANGED!!!!!!!!!! Her appt. will be rescheduled for late Feb. or early March. The new clinical trial might be available then. So today we celebrate! Thank you for your prayers!

Blessings,
Sandy, Chad, and kids

prayer request...

We have Sydney's follow up appt. this Thursday the 17th. We will get the results of her MRI. I'm telling myself that no news is good news. Please pray that that is indeed true. I was telling Chad the other day that Sydney is already a miracle. The size and involvement of the tumor is just mind boggling. Thanks.

Love,
Sandy

Tinker Bling...

another fun challenge over at Loving Lydia. This is from last February, we need to update the wardrobe!

family fun foto challenge...

then

now

what a difference a year makes!

go visit loving lydia to participate

waiting...

Sydney had an uneventful MRI. Praise God! She didn't have any problems at all. Now we just have to wait to get the results, we go back for the follow up visit on the 17th. Please keep praying.

Merry Christmas!

This was Sydney's 2nd Christmas at home! Unbelievable...last year was really a blur since we came home from China on the 23rd. This year will be very memorable! Sydney was delighted by all of the Christmas fun, not to mention ALL of the great presents! There is nothing like Christmas morning...it's such a joy to see their faces light up.

Tomorrow Sydney goes to Cincinatti for her follow up MRI, PLEASE pray that everything goes well.