…is a new day. And today, I didn’t get more than 5 minutes of ABR done, or 20 minutes in the hyperbaric chamber, but I got to hold my little boy in my arms. I got to put him in the ergobaby and walk around with him while kissing the top of his head. I [...]

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Today is one of those days. I have been up since very early fretting about how to get started with ABR, how to break up the day, doing research for the new diet that we will start. How do I make all of this stuff work? How do I put it all together? For example, [...]

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On one of the message groups that I’m a part of the moms were discussing about losing weight. The thing with having a child with special needs is that life is very stressful so it’s easy to gain weight and very hard to lose it. And it’s especially important for us not to have the [...]

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Amidst my jet lag I didn’t have much concentration to get important things done, so I ended up spending most of today tying up lose ends. One thing I finished which I am very happy about is getting ALL of Nathan’s medical records in thick heavy duty folders. I figured it’s time to stop chasing [...]

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We made it home tonight. Nathan is doing MUCH better and was AMAZING during both flights. He didn’t even cry or complain, he was so happy to be feeling (and breathing) better. He went right to sleep so we’re hoping we can get him on a decent schedule soon!

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We spent our last day at the Children’s Hospital in Paris. Nathan has had the sniffles for a few days but we thought it was just a little cold. But this morning he was having a lot of trouble breathing and I couldn’t shake the feeling of “bronchitis”. Now I’ve never had bronchitis and Nathan’s [...]

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Since we forgot the Baby Bjorn we had to get a new carrier, the ErgoBaby, it’s great! I enjoyed carrying him around town. We are so ready to go home!

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We’ve been tagged by Melanie 8 TV Shows I watch(not in any order) 1. House 2. Lost 3. Grey’s Anatomy 4. Desperate Housewives 5. BattleStar Galactica 6. Sesame Street 7. 4400 8. Jack’s big music show (since we don’t get to watch TV much we just wait for the shows to come out in DVD [...]

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….who are suffering from Nathan withdrawal..here are some more pictures We went back to Disney today after the meditation and the munchkin was very happy. And I was ECSTATIC to buy a very WARM jacket…how things change when you’re warm and cozy!

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Our trip to France started off very rocky. First of all we found out when we got to our hotel on Thursday morning that the airline broke the frame to Nathan’s new wheelchair. It is usable, but completely bent and messed up, and we have to keep pushing left as it wants to keep turning [...]

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When I got Nathan’s diagnosis at 36 weeks gestation, all I could do was pray. I prayed and I prayed and I prayed some more…prayer was the only thing that kept me going, the only thing that kept me from being a puddle in a corner. It was the only way I knew to help [...]

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We had a little Halloween party with Nathan’s buddies! Check out the pics.

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Sometimes you have to wonder what is the meaning of having children like Nathan in this world. Stories like this one that a good friend sent me by email make it all make sense: At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered [...]

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We’re in the car driving back to Vermont to catch our flight home. Nathan is in the back squealing with delight as he watches Lilo & Stitch. I’m afraid we’ve created a monster – to get him through the week of confinement and training he had a DVD screen stuck to his face at all [...]

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Sorry, no pretty pictures today. It has been a long hard day. We had our evaluation with Leonid Bylu, the founder of ABR. I’m going to post the transcript of the meeting. As you read, most of it won’t make much sense. Later on, when I get the video of it, I will post some [...]

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Another fascinating day in ABR land. Today we had the evaluation with Gavin who showed us all about what’s wrong with Nathan’s little body. On the one hand it was awful to hear about everything else that’s wrong with Nathan. We thought it was just his brain, now we’re finding out his structure is all [...]

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Today we finish our 3rd day of ABR training. I finally feel I am beginning to grasp the concept and the technique. It’s a very structured, almost mathematic approach, so it’s taken me some time to understand. We practiced on Nathan today. He was mostly okay with the treatment but after a few minutes he [...]

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Yesterday we had our ABR presentation and today our first training. They have explained to us that for our kids to develop better function their structure has to improve. The way to improve their structure is to apply energy to different areas of their body and this energy will help to restore and improve the [...]

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Today we met the lawyer that helped us get Nathan the Kidwalk and the Hart Walker. Today he has become my new hero. He has cerebral palsy. He told me that his mom fought for him and helped him and gave him every opportunity in the world. He graduated from UC Berkeley undergrad and law [...]

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We are getting ready to take off to Canada tommorrow to receive training in Advanced Biomechanical Rehabilitation. And all I can say is that I am EXCITED. I am so happy that we will have this opportunity to practice this treatment on Nathan. And I am excited to meet other families. We will be meeting [...]

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I have more photos from our trip: These are the photos that I took while we were in Dominican Republic for Nathan’s 2nd stem cell treatment. The hotel was all inclusive with lots of entertainment and activities and we had such a wonderful time. Something finally shifted for me. After getting close to a nervous [...]

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We just returned from stem cell therapy in Dominican Republic. I think pictures speak louder than words. The “watching like a hawk” begins as we wait for miracles to start!

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Nathan seems better. We still don’t know what’s causing the vomiting and irritability but at least we know he doesnt’ need shunt surgery. These last few days have been very interesting. We’ve received so much kindness! A lawyer took on Nathan’s case pro-bono to help him get some equipment that he needs and he called [...]

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We got our camera back. It had broken. So now I can go back to posting pics and videos of the little munchies. Here is my new favorite video: And some pictures: And now for some thoughts. I spoke extensively with the people at UnlimitedBrain.com today. Their program seems amazing. Ever since I read about [...]

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I updated the therapy chart with my latest research, including nutrition and the Unlimited Brain. You can click on the image to see a larger version of it.

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Melanie, Daniel’s mom, wrote a post that really outlines how I’ve been feeling lately: Disheartening Just today I spent 30 minutes calling someone to follow up on the appeal for Nathan’s hart walker, until he finally told me to call the vendor and ask them to follow up, how told me I had to call [...]

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I have a bunch of stuff I want to share but I don’t want to do it all in one post. We finally got our camera repaired so I will start adding images again. So today I will star by posting something short because I’m exhausted. We found a new, VERY interesting therapy modality: www.unlimitedbrain.com [...]

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I thought this was really sweet and properly portrayed some of the stuff we go through! Special Needs, Special Love Hal Runkel, LMFT During college, it was commonplace for me to enter into philosophical conversations about the nature of things. What is truth? What is beauty? What is love? That last question was always a [...]

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http://www.youtube.com/watch?v=rXrGb-ABgVw

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I’ve been watching a lot of House lately. After my dream the other night, and infused by House’s spirit of problem solving, I started thinking, what if my dream was a clue? Now let me back up one step. I took Nathan for an evaluation with a neurofeedback specialist. She mentioned that sometimes a child [...]

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Last night I had a dream. There was a voice in my head, just a disembodied voice that said, give him time, the dendrites need time to grow. And then I saw an image of like branches sprouting from a tree, and they were growing. Then the voice said, for most people they grow faster. [...]

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I made a little map of the therapies I want to do with Nathan, their cost and duration. None of these are covered by insurance. I need help trying to figure out what to do and when! Of course our resources are limited so we have to choose what we do wisely. Here are the [...]

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I’ve added a new category to this blog called “What I’ve Learned”. There are so many things I want to tell other parents that are just starting out their journey, or travelling along with me, that I figure this will be the best way to do it. Every couple of days I am going to [...]

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On Saturday I thought I would burst with pride. Nathan’s hippotherapy center had their annual banquet/fundraiser, and Nathan was picked as one of the 5 riders to do a demonstration. They work with over 100 kids but they chose Nathan to represent the ranch! I can’t begin to describe how proud of him I felt. [...]

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We had Nathan’s birthday party today with Nathan’s friends: Lightning struck today and I had an inspired thought. I pulled out that little blue chair that you see Nathan sitting in out of the garage where I’ve had it for like 15 months, and decided to try it out on his stroller. Lo and behold, [...]

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Nathan was 2 years old last week. 2! Can you believe it! The child who wouldn’t make it past birth, turned 2! My first thought was, what if they’d diagnosed him before the 24 week abortion deadline?!?! I would’ve been told abortion would’ve been the most compassionate choice. And my hero, my inspiration, my teacher [...]

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writing this from iPhone so pls excuse typos. Nate and I have had a rocky trip so far. He’s not sleeping well and we’ve both been a bit miserable. I wouldve come home early but the flights are too expensive to change. Were hanging in and I hope something gives soon. I don’t know how [...]

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Now that I’ve gone full circle, it’s time to start talking about other things. I’m planning on writing more in the coming weeks and months about other aspects of having a special needs child, like equipment, self care, and other questions like when to have another baby, etc. Let me start this new train of [...]

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This morning as I watched Nathan scooting a little bit on his belly I couldn’t help but catch my breath at the journey we’ve been through in the last 2 years, in the last 3 months. He scooted forward about 1 inch, but you couldn’t have found a prouder mama. Many people have asked me, [...]

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Some people were asking about how we made the incline plane. I took some photos that I hope show it pretty clearly:

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We got Nathan’s special needs bumbo! I love it! He sits really well in it. I am thrilled. For you non-special needs parents / readers, finding equipment that helps us do little things like sit him and hold him is pretty hard. So it’s especially thrilling when you find something that works. To find one [...]

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Awake butterfly. It’s late. We’ve miles to go before we sleep. And miles to go before we sleep. Is it possible that a child can call you to him even 10 years before his birth? Today I understand. I’ve journeyed to Oz and back. I’ve got everything I need in my own backyard. But today [...]

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It’s the little things in life that bring the greatest joy. We had a nice, relaxing, happy fourth of July. Spent lots of time with friends and family. The highlight of my weekend was feeding Nathan. I decided to let him hold the spoon and eat his meal. Usually we just feed him – it’s [...]

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Okay, here is the video that I promised of a session of the reach program!

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Lately I’ve been obsessed with gait trainers. Some women obsess over shoes, purses, clothes. I obsess over gait trainers. Go figure So I managed to get a hold of a Pony gait trainer to see if it would work for him. My dream is to find the right device so Nathan can gain some freedom [...]

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He had a rough weekend, but started getting better yesterday afternoon. He had no fevers in the afternoon and evening and slept through the night today, so we think he’s on the mend! I’m going to give him one more day off to recover, then tommorrow we start back up with Reach. In the meantime, [...]

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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 don’t [...]

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Little man is sick today. He had a fever and was throwing up a little. We took him to the doc who said he had SSV. Some stupid virus. He had a day of rest and relaxation in mommy’s arms, watching TV and chilling. We couldn’t do program today or very much yesterday, so unfortunately [...]

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We had an excellent appointment at Reach Institute. We got some excellent advice and information from Charlie and Consensao. Here is a summary: * They talked to me a lot about behavioral issues. The fact that Nathan can’t move doesn’t mean he’s not smart enough to know to figure out how to get his way. [...]

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