A little piece of heaven

Today we got the results of Nathan’s tests last week, and they confirmed the diagnosis of Hydrocephalus. His head is enlarging too quickly, and there is a cyst in his brain that is increasing in size. The doctor was very concerned and wants us to see a Neurosurgeon tommorrow. She thinks they’ll probably admit him for surgery right away, to place a shunt in his head. My understanding is that the shunt will drain excess fluid away from the brain.

The doctor thinks this might be what was causing Dorje so much pain, that there was probably a lot of pressure from the water against the brain, resulting in severe discomfort. He has continued to cry inconsolably and it’s been over a month of him spending every waking moment screaming in pain. If this is the source of the pain, then we are grateful for the diagnosis, even if it means going through surgery, and we hope it helps him feel better.

They also said he has very severe acid reflux, another source of agony for the baby. The doctor prescribed 2 more medications (so he’s now on Zantac, Prevacid, and Reglan) which she thinks will help him. Also, she referred us to a Pediatric Gastroenterologist to do further testing and to decide how to handle it.

Finally, he has a minor anomaly in his heart..I don’t have the details of that, but she said that a part of his heart that should’ve closed at birth, didn’t. The doctor doesn’t think this will cause complications.

We will post later this week about how his surgery went. As always, we thank all of you for your prayers and ongoing support.

This week we saw Nathan’s first smile! On Wed Sept 13th, he smiled and cooed at his grandma. It was very cute! He’s starting to “wake up” a lot more to the world, he spends more time looking around and observing things, he is cooing a little bit, and is letting us know how much he loves to be held. We also discovered he likes having a hand on him while he sleeps. The last couple of days he seems to be doing better. We are giving him the Zantac, as well as a few other natural remedies: Glyconutrients, probiotics, and a special herbal tea given to him by a Korean doctor. We also took him for craniosacral therapy.

Also, we discovered how much he LOVES the water, he can be hollering with hunger, pain, fury…but the moment he feels the water, he relaxes and starts playing around. His two favorite things every day are his baths and massages. Every morning and evening he gets a bath and a massage, and he becomes a happy camper (at least for a few minutes 🙂

Our appointment with the pediatrician today was a little bit discouraging. Nathan is still crying a lot, and it’s very hard to get him to calm down. He’s not sleeping much as he wakes up crying. There doesn’t seem to be much we can do to help him or calm him.

Dr. Feldman doesn’t know why he’s still crying inconsolably. She still thinks it might be the acid reflux, although the medication doesn’t seem to be helping him much. We are going to take him to the hospital to do a test to determine if it is acid reflux or not.

She’s also afraid the problem might be pressure from fluid in his brain. His head is growing too rapidly so she’s afraid that might be part of the problem, plus she thinks he might be developing hydrocephaly. He is going to have another ultrasound of his head so the doctor can determine what’s going on.

She did a physical on him and is also concerned about stiffness in his muscles. He pulls his head back a lot, which she says is due to incraesed muscle tone in his back. She reccommended physical therapy to help with the stiffness and so this doesn’t become more of a problem. She thinks he might have some cerebral palsy, but it’s hard to determine the extent.

As if all that’s not enough, she’s now concerned about his weight gain. He has gained too much too quickly. He is now weighin almost 13 pounds. He’s almost doubled his weight in 1 month. She thinks it might be because he’s not getting enough exercise due to the increased muscle tone.

Finally, she found a bit of a murmur in his heart. She wants us to have an electrocardiogram to check that.

So we are trying to stay positive. Doctor Feldman says many of these things we can work on. Physical therapy will do a lot to help him with the stifness and increased muscle tone. As for the rest, once she has the results of the tests, she will see what she can do for him.