Shutterfly

Christmas is right around the corner! Time to start preparing with decorations, parties, and Christmas cards!

Shutterfly is a great place to find Christmas cards and party invitations! While I was browsing I found the With Glee photo card that would work well for our family this year. It's different than anything we've ever done and so bright! I'm also a huge fan of the Premium Card Stock cards because of their high quality and durability. The card stock makes them stand out from other photo cards. One of my favorite designs in this line is the Full of Love.

If you'd like to browse Shutterfly's cards for yourself, you can follow this link to their holiday cards. They even have great Christmas invitations here.

We recently created a Photo Book with Shutterfly to capture our year as a family. It turned out so perfectly! Photo Books are a great way to organize your memories and have them stay in great condition for years to come.

Calendars are also a great product from Shutterfly and would make a great gift for grandparents this year!

If you're a Blogger you could get 50 free holiday cards from Shutterfly too at http://bit.ly/sfly2010.
If you aren't a blogger, Shutterfly has many cards to choose from on sale for 20% off right now!!! You can go to the Shutterfly website and view all their beautiful Christmas cards. It really is a great and easy way to send out a one-of-a-kind card this year!

An answer...

And so, after three and a half years, we have a diagnosis for our sweet Cooper.

About a month ago he was officially diagnosed with Sotos Syndrome, a rare overgrowth syndrome that is characterized by excessive growth typically within the first 3-5 years of life, a tall forehead, big hands, big feet, hypotonia, delayed speech, and several other things.

At Cooper's 3-year checkup our pediatrician recommended we be reevaluated by a geneticist because she had noticed some features that were characteristic of some known syndromes. I can assure you that I questioned her repeatedly on the necessity of having him evaluated again. I didn't want the reason to be solely so he would have a label. I wasn't about to let him be put through so much again for a reason that did not completely benefit Cooper. She explained that because he had characteristics of some known syndromes, there could be other major issues related to those syndromes that would affect his major organs and she wanted to be sure he was followed appropriately by specialists if needed. In her words, "I don't want him to be running down the street at four years old and collapse from a heart attack because we didn't know we needed to be watching him." And of course, at that, I was in.

On August 18th Cooper was evaluated by a geneticist from Weisskopf Child Evaluation Center. Again, we went through all of our family medical history, all of Cooper's health history, discussed every procedure he had ever had done, reviewed all of his developmental milestones and the ages at which he had accomplished them - I even brought my book with my baby pictures and family pictures for help. When the geneticist came in he did a brief physical evaluation and then just watched him, silently, for what seemed like hours. It was so unnerving...I hated not knowing what he was thinking. When he finally started talking to me about what he felt needed to be done, he said that we would do another round of DNA testing and a Bone Age Study. (The doctor also gave Cooper some medicine to help his muscles build up because with hypotonia the enzymes break down faster than they can be replenished and this medicine helps keep the enzymes from breaking down so that the muscles can gain tone and strength. We have seen amazing improvement in Cooper since he started taking it. He runs everywhere and is constantly moving! Such a distinct turn around from just a couple of months ago!) He had a syndrome in mind, but wouldn't name it because I "looked like someone who would go home and search it on the internet." (I know some of you are smiling right now at the intuitiveness of the doctor.) He and his assistant kept saying that this was a ruling out process and just because they were doing the tests didn't mean that it would absolutely come back positive.

Toward the end of the appointment the doctor looked at my face and said, "you look worried." At once I began crying and explained to him what our family had been through and how we had been told that Cooper would never walk or talk and would probably die at an early age. I had feared this appointment because I was worried that they would take us back to that day. I knew he had only had amazing improvement, but "what if" they told me that Cooper had a degenerative disease/syndrome and that he would start regressing in his abilities and die as a child? We had finally just gotten past all the foreseeable appointments and tests and I had just started feeling like Cooper was finally going to be able to just be. I had always contributed Cooper's height and head shape to family genes and his delays were just "random" and he would one day catch up. But "what if!" The doctor looked me in the eyes and said, "What that doctor told you then was out of line and inappropriate and that IS NOT what I am telling you now. Cooper is not going to die from this and he will not regress." I cannot explain the relief that came in hearing that! I then had to ask, "Will he be a giant? Will he stop growing?" The answer: he will not be a giant and he will stop growing. He will just grow faster than his peers and probably stop growing at an earlier age. So we left and headed straight for the hospital to have his tests done. And then we waited...

On Monday, October 4th we received a letter in the mail from our geneticist (one we have received many times before) that reviewed everything that we talked about at our initial appointment six weeks prior. What I was surprised to find on the last page was a noted suspected syndrome, Sotos Syndrome. I guess it was called for in such a letter, but like I said, the doctor hadn't told me what syndrome he was leaning toward. So, because I had not searched A THING about overgrowth syndromes for six weeks, I googled it. And as I started reading about it I could help but giggle. This was Cooper! Almost word for word! It was amazing! This was my sweet baby who had all these characteristics but they had never been put together under one heading before. Soon after giggling, I found myself tearing up. I couldn't believe how mixed my emotions were. I had already decided that if we got a diagnosis or not, I wouldn't be emotionally affected because we were still going to be doing what we have been doing and a "label" wasn't going to change that - I was NOT going to be affected by a label! But through the flood of emotions I felt relief and peace. Not at all what I had expected. I hadn't ever considered "needing" or wanting a diagnosis for Cooper - he is just Cooper and our "normal" is normal. The Lord had answered so many prayers for this little boy and had already given so much peace about his life and future. But as the night wore on, I found myself feeling physically lighter and could breathe better! What?! I realized that for 3 and half years I had been worried, sometimes without realizing it, 24-hours a day. Any time Cooper got sick, "What is this? Could it lead to something more dangerous? Will his body respond appropriately to this sickness?" Any time Cooper bled, "Will his blood clot? Is he more prone to infection?" And especially any time Cooper hit his head, "Is is skull fractured? Will he get a brain bleed and then go into a comma? Will he have seizures from this?" And on and on. It has been my natural reaction to go into defense mode with him to try to keep him safe, when all along I've not had one ounce of control over this. I had (wrongly) been in survival mode since the second day of his life.

The next day the phone call came with confirmation that the DNA test had come back positive. With an answer came relief through knowledge in understanding more about how Cooper's body works and what to expect for him as he grows. We now know that his body will respond normally to illness and injury, and that one day Cooper will be within normal ranges for height AND intellect! How amazing is that!?

This has made me realize that I've been holding him back in some areas. When Cooper runs or plays really hard, he gets flushed quickly and my thoughts have always gone to, "Is his heart okay? Maybe I should make him slow down and take a break." I have been reluctant to enroll him in any strenuous activities because of this fear too. But, come to find out, kids with Sotos Syndrome characteristically flush easily! A week later we signed Cooper up for a two week trial at ty kwon do and took him to a Special Olympics sports night! He loved the sports night, but it seems as though the ty kwon do is not for him right now. :) But that's okay! He tried it and finished strong!

We are so thankful for everyone who has prayed for Cooper and supported us for the past three years! And we are most thankful for a heavenly Father who created Cooper perfectly to be an amazing child who is caring, thoughtful, hilarious, and so imaginative. We are so thankful that He chose us to be Cooper's parents and that He has equipped us and trusts us to take care of him on this earth. What a gift and a blessing beyond measure! I LOVE our normal and I'm so thankful that is it our normal!