Wonder Woman Wednesday

You are just going to fall right over and head over heals in love with this little man. I am so happy to introduce you to Sherri and Dallin.

Check out Sherri's super adorable family blog HERE

 

I love Sherri's spirit. She is lovely from head to toe to heart. I love her story because so many things that happened to her happened to me. Reading the Williams Syndrome symptoms and having check marks by all the common factors. The fact the the cardiologist was the one that took the initiative to do testing , and amazing mom who did research on her own to come up with answers and solutions. Seriously I can't get enough of Sherri.What Sherri doesn't know is that We are in the Midwest every once and a while and always end up in Indiana. That means she has a new stalker and Dallin has a new best friend.

 

{As a side note. best not to read this story and listen to Adele or you will be crying ( both happy and sad tears) just like I was...}

 

 

Hi, I’m Sheri. And this is Dallin.

He is 3 years old, he loves puzzles and helping me cook. He eats pancakes like a maniac.  And he has Williams Syndrome. I’m so glad Ashley has given me this opportunity to share our story.

The story of how Dallin was diagnosed with Williams Syndrome is a little different than most, since it was my mom, not a doctor, who first suggested that he had Williams Syndrome.

Dallin’s birth was a routine, uncomplicated delivery. He was our beautiful, first born baby. He weighed 7 lbs, no jaundice; there was no reason to think he was anything other than perfectly healthy. The doctor heard a heart murmur, but everyone assured me that heart murmurs happen all the time and that it was nothing.  It wasn’t until he was 3 weeks old, when his pediatrician suspected it was more than just a heart murmur that we learned about him having Pulmonary Stenosis. After 3 days back in the hospital, he was on oxygen at home for a month, which helped to alleviate the problem and make it so no surgical procedures were required on his heart.  We were released from cardiology and told to follow up several months later. I thought that was the end of his medical struggles.

From 6 months old and on, we noticed him falling behind other kids his age. He wasn’t gaining weight as he should, he wasn’t crawling or rolling over and he wouldn’t eat any solid foods. Dallin’s pediatrician was sure that I just wasn’t feeding him enough and that if I would just switch him to formula he would be fine.  Just before he turned one year old, we saw Dallin’s cardiologist. She took the delays seriously. Given that he still had the murmur and Pulmonary Stenosis, along with his other issues, she suggested that we have Dallin’s blood drawn for genetic testing. Specifically, she wanted him tested for Noonan Syndrome.

I felt surprisingly calm after being told my son likely had a genetic condition. I think I knew that something wasn’t right and was glad we could finally have an answer for why he wasn’t growing and developing as he should.  When I called my mom to tell her that the cardiologist wanted to do genetic testing, she asked if it was for Williams Syndrome. My mom had been researching Pulmonary Stenosis since his problems began to be apparent. She had come across Williams Syndrome and it seemed to her that it was the most likely explanation for Dallin’s delays. Having only met one child with Williams Syndrome several years before and remembering the distinct facial features that boy had, I said, “No, Dallin doesn’t have Williams Syndrome.”

I began my Google research. Noonan Syndrome didn’t seem to match anything that Dallin had except for Pulmonary Stenosis.  Then I looked up Williams Syndrome. Everything on the page described Dallin, from his hearing sensitivity to his gag reflex to his happy, gregarious personality. I was still in denial because I thought he didn’t match the facial characteristics. He looked like me and my husband. It didn’t help that he was our first child and there was no one else to compare him to. I was still expecting Dallin to just start crawling and talking like nothing was wrong. However, after a few weeks of research, we began to believe that my mother might be right and we decided to ask the doctor to test for Williams.

The test for Noonan Syndrome came back negative.  That didn’t surprise us at all. Now we just had to wait for the results of the FISH test. On April 29^th, 2010, just after Dallin’s first birthday, his pediatrician called to tell me that Dallin had tested positive for Williams Syndrome.

We’ve had a lot of experiences raising a child with Williams Syndrome that we wouldn’t have had otherwise. We were privileged to take part in our very first Walk for Williams in Draper, Utah not more than a month after his diagnosis. We’ve been connected to a great network of friends and family that make the difficult times seem not so difficult and the happy times seem even happier. Dallin brings such a brightness to our family. He has made me more outgoing. I’ve always been a shy person, but it’s hard to stay shy when your child wants to meet every new person he sees. I’ve learned to be more patient and accepting of others who are different from me.

In some ways, I feel very lucky that Dallin is our first child. We weren’t stuck in comparing his development to older siblings. We get to experience the joy in every little new thing he does. I’m always amazed at how kind and compassionate he is. He is so smart and makes connections that I think would be advanced even for a “typical” child his age. I know the odds are against him, but I’m pretty sure he’s a genius.

We still have ongoing struggles with Dallin. He has to be on a low calcium diet due to high levels of calcium in his blood and kidneys. He has high blood pressure and takes medication for that. His heart is still monitored yearly by cardiologists. We struggle with his behavior, like getting him to eat certain foods, calming him down from some of his anxieties, and understanding what we say. It’s likely that new medical issues will arise as he grows up. It’s hard to say what his future will hold. We try to take things one day at a time. We find joy in the little things he does. We try not to make exceptions for him just because he has Williams Syndrome, but we try to show him how exceptional he is.

The biggest thing I’ve learned from being Dallin’s mom is that each child is different, with unique personalities, talents, and needs, whether the child has a disability or not. We have another boy who is almost 1 year old and we use different parenting techniques with him than we use with Dallin. Not because Dallin has Williams Syndrome, but because they are both individuals and respond to different things. Even among those diagnosed with Williams Syndrome, each child can have different symptoms and experience a wide range of difficulties.

We try not to let the label of “Williams Syndrome” affect how we treat our son. In our case, having an official diagnosis was wonderful because it brought other medical problems to our attention (like Dallin’s hypercalcemia) that we wouldn’t have known to look for. Beyond that, Dallin is his own person. He is a vital, wonderful part of our family. He likes books and Spongebob Squarepants and stickers. And he just happens to be missing a few genes.

How much do you love her? Hoe much do you love these PICTURES?!? Sherri you are a true Wonder Woman and I an blessed to say that we are lucky our boys share this super hero gene.