Nathan came home very sick. He has bronchitis, upper respiratory infection, ear infection, sinus infection. He’s been having trouble breathing, running fevers, and today he started throwing up everything he eats. He’s lost 2.5 pounds in the last week, which is a LOT of weight for someone of his age and size.
PLEASE [...]

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Nathan is OFF his PREVACID!  Hooray hooray hallelujah!
A while ago I talked about wanting to take Nathan off prevacid.  So I added a couple of supplements, and told Owen to start giving him the prevacid every other day (he is the official prevacid doser).
Well Owen got mixed up and stopped giving it to him altogether.
Today [...]

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Nathan had his MRI evaluated by the Carter Centers for Research in Holoprosencephaly back in 2006. However, since he still had massive fluid build up in the brain, the data wasn’t completely accurate. Back in mid 2009 he had another MRI and I finally got the results today of the new MRI interpretation [...]

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The last three days have been INTENSE. So much so that this is the first chance I have to turn on my PC in 2 days! Between cooking, cleaning, shopping, feeding Nathan, taking care of him, entertaining him, doctors appointments, phone calls, more appointments – life’s been BUSY!
Now, let me move [...]

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My great friend Amber, Brandon’s mom, is my inspiration for today’s post. She has walked this journey with me from the very beginning, and has been a wonderful friend and support for me all these years. I love her attitude and her perspective.
Talking about perspective, below are a few pictures [...]

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Notice something interesting? Like the fact that Nathan and Lucas are hanging together when they should be 120 miles apart? This is our view for today -home.
Last night after our cop fiasco (see Twitter feed), Nathan started coughing. This morning he was having trouble breathing. By midmorning he was running a fever. By [...]

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I’ve been thinking a lot. I’ve been looking back at the last 4 months, and looking at us now, and feeling … extremely grateful.
The Nathan I have in front of me is different from the Nathan that went to Chile four months ago.
- After 2 years of 0 growth, his head circumference increased by [...]

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All of us deal with the effects of the problems in our children’s brains, and today I realized that although I understand basic anatomy, it’s time for me to get in there and learn more. So I am starting my own studies on development and anatomy. I wanted to share a bit of [...]

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Fortunately Nathan only woke up once at night and slept pretty well the rest of the night. He woke up without a fever and his usual perky self. Phew – removing “lethargy” from the list of symptoms removes the “shunt infection” possibility and leaves us with a simple cold or flu. Thanks [...]

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We went to Catita’s birthday party (pictures soon) and Nathan was a bit “off” but he seemed to enjoy himself. At the end I felt him getting warmer and warmer and we checked his temp and he was running a fever. While I called a Chilean doctor who gave us his cell phone, [...]

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Sorry we’ve been MIA. Nathan’s been sick, I haven’t been feeling too well, and we’ve been in a general state of blahness. Nathan hasn’t been to Medek this week so it’s’ been a depressing few days. It seems he got better for a little while when daddy got here, but then whatever [...]

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This week I witnessed the true power of the GFCF diet. I adopted the diet for Nathan about a year ago simply because it made a lot of sense to me. Even though everyone thought I was crazy, I saw autistic traits in him and decided to try it. For all these [...]

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After driving an hour and waiting for 2 hours, the neurosurgeon told us that Nathan’s shunt looks good and he is stable and does not have to return for another year. 3 minutes later he was out of the room. Another hour driving home later, and all I can say is, looking on [...]

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Scientists reveal secret of girl with ‘all seeing eye’
Fascinating article about a girl with only 1 side of her brain who has almost normal function.

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I realize I’m always talking about Nathan’s shunt but until today I didn’t even know what type of shunt he had, or anything about how it works. So I did a little research and found a cool video:
Codman programmable valve
Just in case anyone has any curiosity about what a shunt is, what it looks [...]

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Nathan had an MRI this morning. It was requested by his doctor for several reasons: 1. to check the status of the shunt and look for signs of over and under-drainage. 2. to check for other potential problems that weren’t seen at the time of the first MRI due to hydrocephalus. [...]

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From 4-23-09

This is Nathan in his theratogs. We got an incredible deal for these through Special Child Exchange and Nathan has been using them for a couple of weeks. They are GREAT! They give Nathan a little bit of extra feedback so he tries to keep his body in better posture and [...]

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So in my previous post I mentioned that we had found a new doctor who believed many of Nathan’s health and immune issues had to do with a B6 deficiency. I wondered if this could’ve been the missing link. Well, guess what – I think it is!
We went back to see her today [...]

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Nathan gained two new labels this week. Autistic and asthmatic. They kinda rhyme don’t they.
You kinda have to wonder how you get to pulls such cards in life. You must be really really special or just have really really bad luck.
So during his last speech therapy Nicky his wonderful [...]

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I’ve been thinking a lot about closure. About how I need closure to Nathan’s “sick a lot” days. About how I need closure to my earlier “do a lot of everything but not enough of anything” approach. And most importantly, I need closure for the things that happened to Nathan when he [...]

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It starts off with you debating back and forth, back and forth. Should I take him, or should I not? Could this be the time when something is really wrong? Probably not, but what if it is? After a few hours of this you decide, best to rule things out and [...]

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Is tommorrow, Monday, at 2pm.
We managed to find an MRI place that is pretty new and thus not busy. So they will allow us to do the MRI without sedation. We will first see Nathan’s pediatrician, who will give him oral sedation. Then, after 30 minutes, we’ll run accross the [...]

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First rulings where a family has proved the MMR vaccine affected a child’s health.
This is AMAZING and I am so glad this is out in public now.
Please watch this.
I personally know of at least 3 or 4 other cases where the parents have seen a correlation between vaccinations and brain injury – not just autism.
I [...]

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I’m jet lagged and can’t sleep even though I should go to bed as it’s midnight here. So I’m watching HOUSE to kill time until I get tired. Something he said about a protein made me have an epiphany. Nathan has a mutation in the Zic2 gene. House said that sometimes [...]

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I’ve been reeling after reading this report:

I don’t understand most of what it says, but these 2 things caught my attention:
1. A tiny subdural collection is seen overlying the left frontoparietal region. It is isodense to brain and may represent an old hemorrhage.
A hemorraghe? No one told us Nathan had had a [...]

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Sorry I’ve been off the radar, Nathan’s been sick.
Please keep him in your prayers!

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Today he threw up again and was running fevers all day. We had our ritual fire drill – back to the doctors, who did blood work and sent us speeding off to the imaging center to have a CT scan. The CT scan showed no shunt obstruction, so we were very relieved.
We still [...]

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We’re leaving in 10 min’s to go to the Dominican Republic!
Please keep Nathan in your prayers, particularly on Friday. Please pray that the stem cells go straight to his brain and become brain matter. Please pray that there are no problems with the procedure (it’s just an IV).
We’ll post as soon as we [...]

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We made it to New York in excellent shape. Nathan slept through the entire plane ride and woke up when we landed. He was ready to go when we landed so it was perfect that we had to take the train and walk around New York City. We had a wonderful weekend [...]

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Nathan woke up with a fever and very upset so we took him in to the doctor and they found he has an ear infection.
We were thrilled!
They were trying to send us to the emergency for him to have a CT scan.
So we were happy as can be that it was just an ear infection. [...]

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Nathan threw up a lot yesterday so we rushed him to the doctors. Throwing up is a sign of possible shunt infection. He’s also been sleeping more this week.
They wanted us to go to the hospital, but Owen and I decided to wait it out and see how he does in [...]

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He’s still not doing too well, the flu is getting to him a bit more. He’s started coughing a lot and is having a tough time breathing as he’s full of boogers.
Yet even with all the discomfort he’s still happy and smiling.
We bought him an exersaucer today to stimulate him and encourage him to continue [...]

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Let’s get the bad news out of the way – Nathan has the flu. He had a fever so we took him right in and they did a nasal swab and confirmed that he has a flu. He’s being a trooper though and not complaining too much.
Now the Good news:
He started turning and [...]

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On Thursday we took Nathan to see the opthalmologist and it went well. She thinks he has good vision. However, she’s giving him a diagnosis of cortical visual impairment as it’s difficult to tell how his brain is processing the information.
Afterwards we had our appointment with Dr. McCombe, the neurosurgeon at Children’s Hospital LA. We [...]

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It’s hard to believe how quickly time is passing! It feels like just yesterday we updated the site..but it’s been 6 weeks! Thanks to those of you that have been keeping baby Nathan in your prayers, we really appreciate it. And thanks to those that have been checking in with us, you’re very very kind.
Well, [...]

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Well, we’ve had a few interesting days, not quite what we expected.
We arrived at UCLA Friday afternoon with our bags packed, expecting surgery, a stay in the hospital, etc. Instead, we got sent home within a few minutes. The doctor, Jorje Lazareff took one look at him and said, “why are you here?” We tried [...]

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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 [...]

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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 [...]

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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, [...]

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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: [...]

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