This Saturday Justin and I hosted a Wolf-Hirschhorn family gathering at our home. It was a great success and we hada wonderful time as I knew we would. We had 5 other familes join ours for food, laughs, story swapping, information sharing, and of course the kids playing. All of the WH children have brothers and sisters so Tyler and Carter had a lot friends to play with too. Wolf-Hirschhorn Syndrome, for reasons unknown, is more common in girls than boys. This was obvious at our get together. Our guests of honor were Norrah, Haley, Karly, Mia, Jayna, and of course Tanner. We were missing two of our close families. Our dear friends Riley and Sara were unable to attend. Riley just had a g-tube placed on January 12th and they live in South Carolina. So, that would have been a long haul especially right after surgery. Sara, who was our first WHS friend, is 20 years old and has just been diagnosed with leukemia at CHOP. She will be in the oncology floor for atleast 30 days. They have been an inspiration to us and other familes with young WHS children and our thoughts and prayers are wit hthem right now.
Meeting other families caring for Wolf-Hirschhorn children, I think, is essential. When children are diagnosed with this rare syndrome parents are typically given worse case scenerios. This usually includes high doubts of walking or talking, 93% chance of seizures, and an overall "low quality of life" as I've heard it told. The research is not very updated and there isn't a lot of it. So, even searching through internet page after internet page, you don't find much positive information. It isn't until you're around other families and children that you realize how very "off" all of that information is. These beautiful children have an amazing quality of life. They have blooming personalities, beautiful smiles, and contagious giggles. I'll never forget the first time we met Sara and her family. She was dancing, humming, and jumping around. I was FLOORED!!! I had no idea this was possible. I cried tears of joy as Sara doted over our baby Tanner. There's really nothing like hanging out with these wonderful families that share the same struggles and triumphs.
I took some great pictures of our beautiful kids.
Here's the whole gang. Tanner, Jayna, Mia, Haley, Norrah, and Karly.
Here's Tanner laughing at Haley and Izzy. (Izzy is Norrah's big sister)
This is Lauren and her daughter Norrah with Jane and her daughter Jayna
Karly just woke up during our picture taking. She's such a lovable little girl.
Me and my good friend Lauren with our babes.
I also got some shots of the siblings playing together.
Carter and Izzy chillin. a href="http://4.bp.blogspot.com/_K9qsU8aoQhE/S10FM12BsqI/AAAAAAAAAgQ/2VcLToxrgjc/s1600-h/CIMG0394.JPG">
Nate (Mia's big brother) and Carter
Ethan (Karly's brother), Nathaniel (Haley's brother), and Tyty all played great together. They each also had there DS game systems for some individual play time.
Here's Izzy and I. I know she doesn't looked as thrilled as me in this picture.....but I swaer she likes me. Haha.
A few little updates:
Tanner has an appointment with Urology tomorrow and they will schedule surgery to bring his right testicle down which is now believed to be in his abdomen.
He also has an appointment with opthomology to see if patching has helped his strabismus. I pray that it works so that he doesn't have to have surgery on his eyes.
Tanner has immunizations coming up at his one year check up. We were doing 2 at a time to try to avoid triggering any seizures but that didn't work. So, I'm taking him the first 3 Mondays in March to get one shot at a time. If this doesn't work, nothing will I guess.
I also got him an appointment with Nephrology just to check up on his horse shoe kidney. It jsut makes me feel better to know that everything's still working right.
We have our first appointment with a Holistic therapist. She's going to try some craniosacral therapy on Mr. Tanner. I've very excited to see if this works for him as it has helped Miss Riley very much. We shall see.
I don't think I mentioned that Tanner was 13 pounds and 6 ounces last week at the pediatrician's office. Yeeeaahhh!!! Keep on gaining Tan Man! Thanks everyone for checking in.