Geneticist Appointment

Today was Harper's geneticist appointment at Texas Children's Hospital. That might be one of the saddest places I have ever been! 21 floors of sick children, some wearing masks, some were hooked up to machines, and some that you could just tell that were born with abnormalities. :( Just absolutely breaks my heart!!!! We are so lucky that there are so many doctors and nurses out there to help us. And thank you to them! :)

Well so our appointment was at 8am. They got us in right away and the geneticist started asking questions from the start of my pregnancy to where Harper is at now. They asked about all of our concerns, her milestones, and did a thorough check with her clothes off of her body. She spent a whole hour of really trying to find out everything possible about Harper. While talking with her we found out that Harper's neurologist, Dr. Foster, is her husband!!! What a small world! After meeting with her she went and met with another geneticist, then the two of them came in the room. After he did a whole another round of checks and questions he informed us that he definitely thinks Harper has a genetic disorder. He said just from walking into the room and looking at her facial features. The shape of her eyes, her nose, her small chin, her eyebrows. So he ordered some blood work to figure out if its this certain syndrome, which he said he's 15% sure it's not. Then he's trying to get a hold of my insurance to do this in depth genetic testing that my insurance already denied. It cost $7,000.00, so we're hoping my insurance will say yes the second time around. We won't even know until April if they say yes, and if they do then the testing takes 6 months to come back. So basically the doctor said the same as the neurologist, which was to keep doing what we are doing. Continue her in her therapies, and continue working with her at home. And to keep focusing on the positives- that she continues to progress!!! After two hours of them spending their time with us we then had to go to the labs to get blood work taken. We should know in about three weeks the results of that blood work. I have to say these were Brian and I's favorite specialists. We didn't feel rushed and they were very thorough and informative with us.

I thank God every day that I know things can be worse. We are so lucky that we were able to get pregnant and that we get to hold and kiss our daughter to bed every night, and that we can play peek a boo with her and make her laugh. It's just so hard as parents to know that something is "wrong" with your child and to not know what it is. It can be AT LEAST a year until we have a diagnosis. Even though this whole process has been draining and stressful, I think all three of us are used to it now. Waiting rooms, telling doctors our concerns, and just the whole waiting process.

We are just continuing our prayers!

On a very positive note- Harper is walking all over the place.... Slowly, but walking! :)

Xoxo,
Amber