EMMA - 17 Months oldRetrun to 22q Stories
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Oh how much Emma loves the outdoors!!! She was born in July and full of life. We knew something was wrong since she was in utero but we did not know what exactly. Doctors noticed her heart was slightly enlarged on her right side. While her stay in the NICU we found out that Emma had a minor heart condition pulmonary valve stenosis, hoarse voice, and swallowing delays. The Geneticist visited us in the NICU she told us she suspected Emma might have 22Q. Then and there; I felt my whole world had shattered into pieces. What’s 22q? I’ve never heard it before! They did the test and it came back positive.
They provided me with resources on 22q. I was distraught! I wasn’t sure what 22q meant. I was scared! I didn’t know what to expect! I went home overwhelmed and emotional however; I had HOPE! That hope overcame all of my fears and I went through that packet of resources and there it was! The one flyer that stood out to me the most The Dempster Family Foundation! I right away looked it up online. The next couple of days I spent hours reading all the information they had. It was a place that I could relate to. It helped me overcome many fears and uncertainty I had. It explains what 22q is! The foundations inspiration was Riley however her story was my inspiration as well. I read her story and it gave me Hope! The faces of 22q gave me the confidence to move forward. The Events thru out the year gave me an opportunity to meet other families. All the resources and the list of 22q clinics gave me guidance and answers.
Emma's biggest challenge is eating! When she was a baby she would aspirate on all type of liquids even the thickest! She couldn’t eat anything by mouth. As her mommy I was so devastated I thought she would never be able to eat. Right away she had an Ng-tube placed. Then she had a G-Tube. Even though that was the case Emma didn't let that stop her! She had the desire to eat. She loves food and let me tell you she proved me wrong! After a long 15 month of working with her speech pathologist and lots of oral trails Emma did Great on her recent swallow study! We are now able to give her solids and honey thick drinks! 2015 is going to be a great year!
Ultimately the foundation gave me courage! I am not alone and no longer scared! I am my daughters advocate. Thank you Dempster Family Foundation you truly helped our lives and I know this foundation will help many more to come.