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Genetic Testing

Today we went to the U of I to see a genetic doctor with Lia. It was recommended first by her pediatrician, and then supported by her cardiologist. The purpose of the visit was to make sure there isn't anything else going on with Lia's body that we aren't aware of, and to see if there is any correlation between her heart defects and her hemangiomas. While we won't know the results from the tests for 4-6 weeks, we are now doing an ultra sound of her kidneys and also did some blood tests to check her thyroid. I will post the results from those tests as soon as I know. It was a long day. Lots of questions, a very thorough physical, more questions, blood draw (in which pathology gave up on and sent us to the nurses station to try and get some blood from her! She has some tiny veins!) and then after all the drama with the blood draw, we decided not to do the renal (kidney) ultra sound there and scheduled it in Des Moines for a different day. The genetic doctor said there is a "association" called PHACE that would maybe link up her hemangiomas and heart defects, but the hemangiomas seen with this diagnoses are usually very large and cover most of the face. Lia's are tiny. He said there is also a very small chance that she has a hemangioma on her brain, but since we are already treating the other hemangiomas with propranolol, that if there were, that is what they would treat that one with too. He said for us to go home and think about possibly doing an MRI to check for the hemangioma, so that's what we're doing...gathering opinions and thinking about it. Even though we were there for 3 hours, it felt like it was all day, and we're all very tired. Now we sit and wait to hear back from them in a month or so with the genetic test results...we also go back in a year for a follow up.

 Ok, moving on from Genetics....now that CHD Awareness week is over, I want to take a second to thank everyone who showed their support for Lia! I was in awe of the pictures I got of people wearing red. If you didn't see my post on my room being decorated earlier this month, be sure to check it out! So much love and support really made it an awesome week for us. Thank you! Thank you! Thank you!

Hudson looking handsome in red!

Ella was in red from her head to her toes!

My former teammates in Wichita!

Sweet sweet Lily looks adorable in all that red!

Even my mom's office at work was decorated by one of her co-workers!  Notice the heart-shaped vase the flowers are in?   LOVE!

This is my family in Kansas.  I love this picture, and I love them!
Not only is Layla wearing red, but she also knows she looks good in it, because that's a mirror shes looking in, and shes all smiles!

 And a few other pics to share:
Today Jack and Grandma Sue went to visit my great grandma (J&L's great great) on her 95th birthday!  Happy birthday, Grammy!
Fun in the bathtub!

Jack says he can't wait for summer because he's ready to try and go underwater.  We'll see how that goes....

One last thing before I go.  We've started planning Lia's first birthday.  Can you believe it?  First Birthday.  The words don't even sound right coming out of my mouth.  Wasn't she just  born a couple of weeks ago?  Wow, time is going too fast!

Also, we found out that Jack made the 2nd round of "cuts" to attend pre-school at Southeast Polk in the fall.  They only take so many three year olds, so now he goes to a "screener" at the end of the month, where he will be assessed with another 3 yr. old, by a pre-k teacher, to see if he makes the final cut!  I'll keep you posted on that as well!  Jack and the word "school" also sounds like Chinese coming out of my mouth.  When did my babies get so big?   //long sigh//

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