A little piece of heaven

Nathan’s had a rough week, he’s been crying a lot and we just couldn’t seem to do anything to calm him. We took him to the pediatrician again yesterday, and she thinks he might have acid reflux. She gave him a prescription for Zantac and we are hoping that will help him.

It seems this is part of Nathan’s condition: http://hpe.stanford.edu/support/FAQ.html

It’s been a rough few days and we are hoping the medication will help him.

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

As we have learned more about Nathan’s condition, we have realized how much he still needs everyone’s prayers and support. His every breath is already a miracle, but to have a normal, healthy life, he needs more prayers.

Already he has beat the odds, but he has so many more to beat.

Nathan’s condition is called: Semi-lobar Holoprosencephaly

Here are some stats that we found from emedicine:

Mortality/Morbidity: In general, holoprosencephaly results in substantial early morbidity and mortality with a significantly reduced survival. However, individual reports describe long-term survival in all forms of holoprosencephaly.

Patients with alobar holoprosencephaly have a survival rate of about 50% by 4-5 months of age and about 20% at 12 months of age. Isolated semilobar and lobar holoprosencephaly have empiric survival rates of about 50% to 12 months of age.

Recent data from the Carter Center for Brain Research in holoprosencephaly indicate that complication rates in surviving individuals are as follows:

Semilobar holoprosencephaly – Spasticity in 85%, pituitary/hypothalamic dysfunction (diabetes insipidus, hypogonadism, hypothyroidism) in 74%, hypotonia in 70%, seizures in 50%, choreoathetosis in 20%, ambulation in 10%, use of hands in 10%, and use of words in 10%.

So for Nathan to be able to walk, talk, and use his hands, he has only a 10% chance.

Please keep baby Dorje in your prayers. Right now his brain is still developing, so please pray that it will develop sufficiently for him to be able to have a normal life.

Already you have all been so kind, we have received so much support, so many emails from people praying and sending this fortunate baby so much love. I know this is the only reason he is alive now. So please keep him in your heart, please continue to pray for him, please help him through your good heart.

We will continue to post pictures and updates as baby Dorje grows.

For now, he is doing wonderfully, he is a delight to care for. He is a very peaceful baby, very curious and in tune with people around him. Every day with him is a miracle and a joy.

We can’t express how deep our gratitude is for your continued love, prayers and support.