First visit to the pediatrician

Today we went for baby Dorje’s first check-up with the pediatrician. As the miracle continues to unfold, it turns out that the pediatrician we contacted (who is just down the street from us) is one of the few pediatricians that has experience treating children with this type of neurological problem. I don’t know the details, but she spent a few years specializing in this field and trained at UCLA, where she did her residency. In other words, she’s the PERFECT doctor to treat Nathan. We were really impressed with her knowledge and how she knew exactly what to do with Nathan and how to approach the situation.

But first, let me share some excellent news. She was shocked when she saw Nathan, and asked us how sure we were of his diagnosis. She said that she has seen hundreds of children with holoprosencephaly, and of all the children she’s seen, she was impressed by how well he’s doing. In her own words, “This is a special child.” She said children with holoprosencephaly usually don’t do as well as he’s been doing, and she was just very very impressed. Doctor Feldman told us a story of a child whom she saw that was pretty much normal, just had a tiny problem controlling muscles in her left side. They did a CT scan on her brain to see if they could help her, and found a huge amount of problems and a very serious condition. However, she was a normal girl, leading a normal life, with an IQ of 130, and if they hadn’t done the CT scan, they would’ve never known how serious her condition was. According to her, this shows that what we see through medical instruments doesn’t always reflect on the outside, as it doesn’t account for spirit. She gave us a lot of hope and thought that baby Dorje has a great chance of doing very well.

Already she gave us referrals to see other physicians so we can assemble the team of doctors that will be following Nathan. She also gave us more information regarding support services available and gave us a 50-page packet of information and resources. She was amazing!

We found out that she trained under the doctor that talked to us at UCLA, Doctor Barrett, and like her, she believes that with intervention and dedication Nathan can really thrive.

We have to go back for weekly appointments to check the circumference of his head to make sure it doesn’t swell (due to excessive fluid), and she already scheduled the MRI and other tests for next month.

Owen, Nathan’s grandma, and I walked out of the doctor’s office glowing. It was incredible to see how amazed the doctor was and to hear someone of the medical profession saying how fortunate and strong this kid must be to be doing so well.

We feel so fortunate to be able to watch this miracle continue to unfold.

However, we won’t stop asking you to keep baby Dorje in your prayers, we think everyone’s prayers is what continues to help him. Again, we can’t thank you enough.

We’re going to continue posting pictures and updates if you want to stay in touch with baby Dorje’s progress.

With Love,
Marcela & Owen

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