Yesterday I took Nathan to his doctor for a check up. He threw up at school so they sent him home, and he did look a little bit pale and out of it. The doctor couldn’t figure out why he was throwing up, but we took the opportunity to talk about his overall health and [...]

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He is home, and so happy to be in his own bed! He recovered well from the croup, his breathing is significantly improved, and his color and appetite are back The swallow study was a failure. He is aspirating all liquids, but does okay with thicker textures like banana. They recommended intensive feeding therapy and [...]

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Nathan is doing much better, ready and anxious to go home! The ph probe was a no-go, so we just have to do the barium swallow and then we get to go home. He’s back to his usual happy self!

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Nathan is still at the hospital and will be here for 2 more nights. He has bronchitis and croup, which was affecting his breathing. He’s been receiving breathing treatments, iv steroids, and got a big dose of antibiotics. The question arose about whether this was all being caused by reflux and/or aspiration. He’s been off [...]

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X-ray came back negative for pneumonia but they are going to admit him. He’s working too hard to breathe and sounds very junky so they want to observe him overnight. I’ll keep you guys posted. In the meantime, we really appreciate your prayers!

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I spoke to Nathan’s doc who told me to call 911 and get him to ER. So we are at ER waiting for Nathan to be examined.

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I think the single hardest thing for me about Nathan’s disability is The Worry. Right now I am typing this with Nathan next to me receiving a breathing treatment. He had a terrible night at grandma’s, really struggling to breathe. I’m sitting here wondering, should I take him to the hospital? Why is he getting [...]

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I took both Nathan and Izzy to the doctor yesterday for a follow-up.  Izzy still has an infected ear (that she’s had for over a month!) and the doctor believes she may also have allergies.  Nathan’s ears looked good but we talked about his ongoing asthma/respiratory issues and she shared my concern.  He seems to [...]

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Just when we thought all was well, we end up on our way to ER. Nathan has been throwing up and can’t hold down water, pedialyte, or anything at all. I’m leaving right now, will update later as I have more info. Prayers please!

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Today I took Nathan to a pediatric allergist. I want to get to the bottom of why Nathan is getting sick so often. I’ve had a couple of people that have worked with Nathan point out that they’ve seen a decline in his well being, development, and health. Around this time last year he was [...]

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I am feeling the itch again…the itch to wander, travel, feel the hot sun on my (fat) bikini clad skin, let down my hair and forget about therapies, todo lists, daily routines. If I can combine some travelling with HBOT for Nathan? Even better! I found an HBOT chamber in Cartagena, Colombia, the most beautiful [...]

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* It was dark and we’d just gotten home from dinner and the store. I had my phone in one hand and a used cup in the other. I was watching Izzy and tossed the cup into our large outside trash can. I walked inside and noticed that I was still holding the cup. Yep, [...]

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So the wonderful Mary seems to have figured out what’s been bothering Nathan. He has an awful awful cut / sore on the inside of his cheek. It looks like it’s been bleeding, and he’s been swallowing the blood. Poor baby. All this time I kept thinking it was something to do with his back [...]

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We saw the doctor today and she said to give Nathan time to heal. She said that his body just went through a lot and needs more time to fully recover. His lymph nodes on his neck are very enlarged and she thinks that’s what’s causing him so much discomfort in his neck. But other [...]

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Another visit to the Chiropractor and a session with the Rolfing massage therapist later, Nathan is still in a state of misery. I’m starting to wonder if it’s really his body, or if there might be something else going on? I hate seeing my son in pain and I hate not knowing what’s causing it [...]

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Last night and this morning were absolutely terrible. Nathan bore the whole hospital stay with stoic silence. He is one tough kid. But last night he came unhinged. He was in so much pain. He tried to sleep but couldn’t – he woke up every 15 minutes crying and whining. I could see the pain [...]

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Yes, you read right – we’re home! His potassium went up from 2.8 to 4.7, his heart went from 65 to about 105, and he hasn’t vomited since last night! Something is still not right with him, however. He has continued complaining. Something’s hurting him but we don’t know what. He hasn’t spent a minute [...]

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The saga continues. Nathan just exploded – he threw up everything he’d consumed in the last few hours. Including all the bananas and pedialyte we’d given him to try to get his potassium up. His IV blew earlier this morning so we were trying to get his potassium up through fluids and nutrition. The doctor [...]

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Slowly but surely he is bouncing back. He’s starting to eat and drink. He is asking for what he wants. He enjoyed a stroll around the picu. Today he spent most of the day awake! So I will steal Pam’s line: Believe…prayers work!!!!! Thank you so much for helping our superhero!!!!

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Nathan’s doctor came over a couple of hours ago and finally gave us some answers. Nathan appears to have a bladder infection, combined with an upper respiratory virus. The combination of these two was causing him to throw up, which in turn caused dangerously low potassium. This seems to be the reason for the constant [...]

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Nathan continues to sleep and sleep and sleep. Today his potassium was very low, and his WBC count had more than doubled – indicating there is infection somewhere, but we just don’t know where. The CT scan came back fine. His doctor should be coming by shortly to discuss our next steps. There’s talk of [...]

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Nathan has spent the entire day sleeping. He opens his big beautiful brown eyes for brief moments, looks around to make sure mommy is there, and then drifts back into sleep. He continues to vomit, and still cannot tolerate any food or liquids. We did the CT to check on the shunt, still don’t know [...]

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Nathan’s heart rate is hovering in the mid 50′s and low 60′s (during sleep). I’ve never seen his heart rate below 80. They still don’t know what is wrong with him. He is still vomiting and still can’t hold anything down. We still have no diagnosis. Any ideas about what could be going on? Tests [...]

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So far that’s the only diagnosis anyone’s offered – SSV – Some Stupid Virus. All of the test results have come back relatively normal, so the doctors are thinking that the virus also affects the stomach, as well as the upper respiratory system. What got Nathan into trouble this time is that he hasn’t been [...]

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Nathan got admitted to the hospital. We will be here at least until tomorrow. He’s had a really rough day. No definitive diagnosis yet. Thanks so much for all the prayers!

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Nate continues to vomit…he is dry heaving…he passed out in my arms…he looks like skin and bones since he hasn’t really held down food in days…he is vomiting his fluids…I’m freaking out…if he’s not better by morning we’ll be heading over to ER. Prayers please, pretty please?

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That was Nathan’s diagnosis today…. …bronchitis …otitis (ear infection) …sinusitis Poor guy. He threw up this morning but fortunately hasn’t thrown up since. He also hasn’t really eaten anything that he COULD throw up. All those hard-earned calories…slipping away. He’s on augmentin for all of the itis’es. We hope the antibiotics will do the trick. [...]

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Nathan was sent home from school yesterday because he was vomiting. We jumped into “sick mode” which meant lots of fluids, TLC, and rest. He seemed fine all afternoon and enjoyed his time of rest. He ate a great dinner and at his usual time we put him to sleep – on his back, as [...]

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Our house seems to be full of them. I have a nasty sinus infection. Nathan got sent home from school today with vomiting and congestion. Izzy is snotty and bad tempered. Owen seems to have bronchitis. Even Lucas has tendonitis and is limping (because he’s gained 30 lbs and now weights 178 lbs!!!!). So I [...]

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I took Nathan to see the orthopedist today. According to the surgeon, Nathan’s hips had gotten significantly worse since he first saw him, and we needed to talk about surgery. He told me that Nathan’s left hip was at about 42% subluxation, and the right was at about 35%. He felt that at this point [...]

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Nathan is doing better. After we got home from the doctor’s office yesterday, Nathan fell asleep (about 2pm). He slept through the afternoon and evening, finally waking up at 3 am. Then I couldn’t get him back to sleep – so he stayed up, we hung out, had a tiny bite to eat, played, and [...]

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The day started with me on my knees, vomiting, courtesy of morning sickness. I heard my phone ring but couldn’t get to it. After I finally stopped I picked up the phone and it was the school, telling me Nathan was vomiting and needed to be picked up. Given what a mess I was, I [...]

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I was going to write an update but I realized that I already did – 2 years ago. Anatomy of a Hospital Visit This is pretty much what happened last night. Nathan is home but we still don’t know what’s wrong. Alas. Next: his regular doctor, maybe she’ll have some ideas. Update on Nathan: We [...]

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…or at least, that’s why Nathan’s doctor thinks I am. Let me say this first. I love Nathan’s doctor. She is the best doctor I know. She’s a House kind of doctor. She’s a great diagnostician. She is smart and gutsy and almost always spot on. She has kept Nathan out of the ER numerous [...]

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* Nathan has a nasal and ear infection. He started running a fever today so I took him in to the doctor and lo and behold, that’s what’s had him throwing up and having issues. He’s on antibiotics now. After his first dose of antibiotics he immediately looked better so I think he’s on the [...]

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…gets the grease. A few nights ago I woke up in the middle of the night with the words “Swash brace” in my mind. I quickly booted up the ipad and looked it up again, and the moment I read up on the swash brace I knew that was the answer to Nathan’s hip problems. [...]

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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 PRAY FOR [...]

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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 [...]

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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 by the [...]

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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 forward with the [...]

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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 of Nathan’s brain: From [...]

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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 noon [...]

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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 [...]

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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 info from [...]

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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 for everyone who [...]

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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, Nathan started [...]

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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 he’d originally had [...]

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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 months I’ve kept [...]

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