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.

Happy Gotcha Day!

One year! I can't believe it! We celebrated today with Chinese food (what else!) and chocolate cake! What a year it's been for us...so many ups and downs. Thank God for the ups! We are blessed beyond belief. Why God has entrusted this sweet girl to us, I have no idea. Sydney is a treasure that's for sure!

Thinking of Mama...

I can't help but think of Mama today. Tonight would have been her last night with Sydney, I'm sure it must have been so difficult for her. Sydney had been with her since she was about 8 weeks old. I will be forever grateful for Mama...

Remembering...

One year ago today we were on our way to China! It's hard to believe. Here are a few pictures from the first few (of MANY) flights. This time last year we were waiting to board our flight to Beijing. The Chicago airport with 3 kids, Uncle Will, the "expectant" parents, and TOO MUCH luggage! We were a sight to see! What an adventure.

Pretty pictures...

I'm such a horrible blogger, the only thing I do is post pictures every now and then. I'm sure that's what most people look for anyway. Let's face it, I'm not the writer that my husband is! But I do have a PRETTY girl! Well, of course I have three!

Dora and a baby sister!

The perfect Dora!

Sydney LOVES her baby sister!

9 Months!

Our 1st picture of Sydney!










Sydney now! Having fun with blocks!

I really can't believe it's been 9 months! Last May we submitted our 1st application to AHH and in a record 7 months( although I had been waiting FAR longer than that) we had our sweet girl. The time has really flown by since she has been home. As prepared as we thought we were to become parents to a toddler we just really had no idea the challenges we would face. Sydney's diagnosis of NF1 left us stunned to say the least. I know that God has a special plan for our sweet girl. I can only hope to stand up to the challenge with as much faith and grace as possible. There are days when I feel as though I'm failing miserably.

Speaking of grace, I really miss my Grace. She is now in Ireland. I hope you see this post soon. Know that you are in my thoughts EVERYDAY. I couldn't have done any of this without you.

For those of you that still keep up with the blog, please continue to pray for Sydney and our family, we truly appreciate it!

Love,

Sandy

August

The past 8 months have really flown by. We've experienced so much with Sydney, ups and downs. I think the finality of adoption and all of the stress with doctor visits set in for her in the past few months. She has had to deal with so much in her short life. Her next appt. has been scheduled for January, what a welcome relief! Please keep her in your prayers. Thanks and blessings,

Sandy

update #2

PRAISE GOD!!!!!! There have been no changes and the PET scan looked good! We are SO EXCITED to say the least! Thanks for all of your prayers! Please keep them coming. The new plan is to get a repeat (chest) MRI in about 5 months. In the meantime we will be discussing a new clinical trial coming up that is aimed at shrinking the tumor. Sydney once again had an uneventful day with her sedation. It's SO good to be home. We feel like we can finally take a breath! We are looking forward to a few days off with Daddy!

update #1

Sydney had her long awaited (dreaded) MRIs yesterday. She did FABULOUS! Thank God! CCH is a DIFFERENT world! Her sedation was a breeze, literally! She took a few breaths of "gas" and was out in a matter of seconds. All of this is done before any IVs. What a blessing! She didn't have any trouble after waking up or eating! Please keep praying. I'm so thankful that everything went well yesterday. She will go in Thursday morning for the PET scan and then we meet with Dr. Weiss at 11:00. PLEASE PRAY......

6 Months!

I can't believe it's been 6 months since we were in China to get our sweet girl! It seems like she's always been here. I finally decided to post some pictures (certain people keep pestering me to do so!). Not much to say , I just wanted to get the anniversary post up. Enjoy the pictures!

A break...

I realize that I haven't updated in a while. Well, I'm tired and I don't want to even think about updates. But here I am. For those of you that actually check the blog and don't already have this info. here goes. After the "good" news from the CT surgeon we went for a routine follow up with the genetics Dr to discuss Sydney's NF1. She did NOT agree with his opinion and suggested we get a second opinion. She felt that we should be aggressive and get the tumor out before it caused any problems. So off we go to Cincinnatti Children's to meet with a leading Spinal surgeon that specializes in this type of tumor. His exact words were "enjoy her while you can", talk about devestating. He said that the tumor is too involved and would definitely cause problems if they tried to remove it. Surgery is NOT an option. That's bad news when you know that surgery is the ONLY option. So he refers us to the NF clinic there. They have a great program, one of the largest in the nation. This will be much better than trying to piece things together here. We have since met with the NF team and again have hope! They have a better outlook than the other Dr. But the disease is SO unpredictable we just don't know what to expect. The plan for now is to have repeat MRIs and a PET scan. If there haven't been any changes then we will again just wait and see. If there have been changes then they will probably place Sydney in a clinical trial aimed at stopping the growth. Yes, this involves experimental drugs.

So there's the update. Sydney is doing great! She continues to amaze us! Our 6 month anniversary is coming up! Sydney does well with routine(I guess we all do), so I'm trying to keep life LOW KEY and consistent. I miss Louisiana. NO PHONES, NO COMPUTER, NO DOORBELLS,and NO DOCTORS! If you've made it this far, thanks and keep praying. God is bigger than this tumor which by the way is described as HUGE.

1 year!

Our girl!

One year ago today we submitted our application to AHH! It's also the 1st time I met Grace! Many, many times I've needed a "Grace fix" and she never fails. Thank you so much for EVERYTHING.

4 months!

I can't believe it's been four months since we got our sweet girl! In a way it seems like yesterday and at the same time it's as if she's always been with us. The pictures speak for themselves.

Then

Now

The Arboretum!

Yesterday we decided to have a picnic at the Arboretum! The weather was perfect and the kids had a great time. We love to go on picnics!

Mommy's swing!

This is my new swing from Daddy! He and the boys built the frame yesterday. I just LOVE it! The challenge will be to keep it for myself! Everyone else seems to love it as well!

THANKS Daddy!

Thank you!

I just wanted to take a minute to thank everyone that has and continues to pray for Sydney. Also, THANK YOU SO MUCH to those of you that have taken the time to call, write, or send an email. It REALLY means so much! Sydney is such a sweet heart just like the rest of our kids and she was given to us by God, just like the others! I really hope that people can see that adoption is so much more than a piece of paper. It's so much more than doing something good. Sydney is our little girl as she was meant to be. It's funny and also sad how responses are so different when you "have" a baby. So thanks again!

Hope you enjoy the pictures! We are glad that Spring is here!