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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5EYkOduF2JNiSMHdhZECbPh1Z3-m0Ia6M_5BXXGJMIEytfMF3m521tX2Pe3n7E1abrLFzVXhbCAU4VW6juT1IMxmRx-WE1vZeEYdvhY6P8s8OsqBcq6x4g-Yq2lf37VVlu_FHxj8CWPed/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.
10 comments:
I'm so sorry I missed it. I know my guys had a great time. Thanks again!
First of all, 13 lbs!!!!! Holy cow, he is gaining so well! Way to go Tanner! Loved the pictures, it looks like it was a great afternoon. We will be there next time, I am so anxious to meet everyone. Hope all of your appointments go well. I hate the one year vaccines, not sure what we are going to do, but I like your approach. We may have to do that also.a
We Love You Tanner. Nona was happy to meet your beautiful friends and their families. xoxo
Very well said about our exceptional kiddos Jess. They fill our world with so much more love and joy than we were led to believe they could.
Thank you for the great food, fun times for the brothers and sister of our WHS kiddos and the sharing of the joys and struggles raising our special ones. No one understands like another parent with a WHS child.
Love the pictures! Looks like you had a great time! All of the kids are just so beautiful. It is so great meeting other families with WH children.
thanks for a great day. it was great to meet you and the other family's. mitch had a great time to he woke up this morning got dressed and said i am ready to go back and play with the boys. hope your appt. goes well . if you talk to sara's family . we would like to stop in and see her if it is ok . we come back to philly on feb 3rd at 10 am.
We had a blast! Love all the cute pictures.
Looks and sounds like you had a great day!! I too cant wait to meet other WHS parents and kiddies, to share stories, triumphs, hard times etc... love the photos!
Good luck with Tanners appointments this week, and one word for the weight Woo Hoo... Well done tanner
Hi. :) I followed here from Lauren and Norrah's blog. Tanner is so adorable, and the get together was an awesome idea! Poor little Tanner, surrounded by girl folk. :P
I have a 15 month old little girl who is not diagnosed, but we are in the process of genetic testing.
You are so right about what you wrote in this post. On paper, it looks so bleak and awful. But in reality, it's really the opposite. My mother is having a very hard time accepting my daughter's condition. She loves her, and to her this is the end of the world. She refers to it as an illness. Once she told me that she is so confused- she sees understanding in my baby's eyes, but how can that be? Kids with such disorders are "supposed" to have hollow, empty eyes.
Well, I guess she should read some of these wonderful blogs, look at the photos, watch the videos.
I guess it's a product of her generation, when most such kids were institutionalized. And with the care they received, anyone would have a hollow look in their eyes!
In any case, this comment is long enough. :) Your family looks absolutely perfect.
I love all the pictures, it looks like you all had a great time. I wish I lived closer to you all to meet you in person, but the blogs are great because I feel like I already know you and your family. Yea for Tanner with the weight gain! Keep it up.
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