Archives for February 2010

I don’t envy your life

Someone said these words to me today. At first I found myself blubbering about how wonderful Nathan is and everything I’ve learned through him. I was trying to justify why my life is so wonderful. Sure sure she said. Humoring me. Deep down she felt she knew “the truth”, no matter what I said.

After a little while I was angry. How dare she.

Then after a while longer I felt sad for her. In fact I just felt plain said. I realized that that’s probably what most people think when they look at us, at our life. Poor little boy, he is so handicapped. Poor them, they have to live with a severely disabled child who can’t walk or talk. It’s what I would’ve thought before I had Nathan. Just like most everyone else, I was so ignorant about this life, this situation. And I realized that’s what people think when we’re walking down the mall and they look at him and look away. Pity.

How sad.

I don’t claim that my life is better than yours. I don’t claim that my life is better than anyone’s. I don’t claim that having a handicapped child is better, or worse, or special. It’s just my life.

But what I will say is that although initially unwanted and unexpected, this life is far better than anything I could’ve dreamed of for myself. Before Nathan I dreamed of having a successful career, lots of money, a brood of brilliant happy kids, lots of traveling. Yes I wanted to be a good person and do good for the world, but that came after my other dreams and priorities mentioned above. If I had time.

Today I want more than anything to be a good person. My biggest wish is to see my family happy. And my 2nd biggest wish is to help others. I don’t care for money, or career, or traveling, or success. I understand that happiness is a state of mind and comes from the simplest feelings of gratitude and appreciation.

Today I understand the value of simple pleasures. Of being happy just because. Of not needing external things to be happy. Of deep acceptance. And I find that the acceptance that my son has taught me is starting to extend outwards, to other people in my life. My life has changed significantly in the last 3.5 years, thanks to my son. I feel truly, completely, and fully blessed for the changes that my son has brought to my life.

I could sit here and feel pity for others who haven’t had these opportunities. Who don’t understand the things I’ve learned so deeply. Who can’t experience the joy of simple acceptance, of being grateful just because your child is alive, of not stressing over minute, unimportant issues.

But I don’t. I don’t judge. I don’t feel my life is better than yours. I don’t feel my life is worse than yours. I just feel grateful for the life I have.

But I know it’s ignorance that makes people think that way. I know it’s because they haven’t walked in my shoes. I know it’s because society has taught us to value normalcy, to value success, independence, money. It makes me sad. So very sad.

Because, truly, fully and completely – I wouldn’t trade a moment of my life with Nathan. I do feel like the luckiest person in the world, how did I get so fortunate to have such a pure, beautiful, angelic soul in my life. A little person who teaches me everything by doing nothing. But I’m sure every mother feels this way about their child. So maybe my experience is not different to anyone’s. Except I can say that I have learned what is truly valuable in life, and don’t waste time stressing over unimportant things, the things most people stress about.

Yes, I fight for him. I fight to keep him healthy. I fight to keep him strong. I fight to give him opportunities for a bit of freedom and independence. I used to fight because I wanted more “normalcy” for him. But now I fight to keep him healthy, to keep him strong, to keep him happy. Because I want him here with me for as long as I can possibly have him. Not because I want him to be like everyone else. But he has taught me to accept, so I treasure every moment that he IS here with me, in the here and now.

I really really don’t envy your life. I don’t envy anyone’s life. I truly deeply love my own. I don’t want you to envy my life either. I just want you to be happy in your life and let me be happy in mine.

Today’s Update

My boys, safely and happily at home for the night. They came home a day early because Owen has to take care of work stuff. I was thrilled to see them. Nathan was beaming with happiness and I can tell how much he thrived from spending these last 4 days with his dad.

Life is good.

PS. 14 dives down, 26 to go!

Magnesium

I got this in an email, thought I should share this.

Autistic children and children with other spectrum
disorders had significantly lower plasma
concentrations of Mg than normal subjects.[1]
Dr. M. Strambi

Research published in the American Journal of Epidemiology in 2002 shows that when the diets of 2,566 children ages 11-19 were studied, less than 14 percent of boys and 12 percent of girls had adequate intakes of magnesium and low magnesium intake was associated with lower measures of several lung functions (including lung capacity and airway flow).[2]

“Magnesium deficiency definitely accentuates the allergic situation,” says Terry M. Phillips, D.Sc., Ph.D., director of the immunogenetics and immunochemistry laboratory at George Washington University Medical Center in Washington, D.C., and author of Winning the War Within. Thus we can extrapolate that magnesium deficiency can provoke the well known leaky gut syndrome, which we will discuss below.

The Department of Family Medicine, Pomeranian Medical Academy, states that dietetic factors can play a significant role in the origin of ADHD and that magnesium deficiency can result in disruptive behaviors.[3] When dealing with autism spectrum and other neurological disorders in children it is important to know the signs of low magnesium: restless, can’t keep still, body rocking, grinding teeth, hiccups, noise sensitive, poor attention span, poor concentration, irritable, aggressive, ready to explode, easily stressed.

When it comes to our children we need to assume a large magnesium deficiency for several reasons. 1) The foods they are eating are stripped of magnesium because foods in general are declining in mineral content in an alarming way. 2) The foods many children eat are highly processed junk foods that do not provide real nutrition to the body. 3) Because most children on the spectrum are not absorbing the minerals they need even when present in the gut.Magnesium absorption is dependent on intestinal health, which is compromised in leaky gut syndromes that the majority of autistic children suffer from. 4) Because the oral supplements doctors rely on are not easily absorbed, because they are not in the right form and because magnesium in general is not administered easily orally.

Leaky gut syndrome causes a long list of mineral deficiencies. The carrier proteins responsible for transporting various minerals into the bloodstream are damaged by the swelling and inflammation of leaky gut syndrome, something akin to allergies in the gut. It doesn’t matter how much magnesium you take when the carrier protein is damaged, magnesium will not get into the body where it is needed. The body can also be deprived of zinc, copper, calcium, silicon and a wide variety of micro-nutrients. Leaky gut syndrome can also block the absorption of vitamins and essential amino acids, severely hindering nutrient uptake.

Leaky gut syndrome is the result of intestinal inflammation, which causes the spaces between the cell walls to enlarge. It is a condition in which the intestinal lining is more permeable than normal due to abnormally large spaces or “holes” between the cells of an inflamed intestinal lining. It can be caused and aggravated by a number of things such as over use of antibiotics, parasites, excessive consumption of sugar and refined carbohydrates, birth control pills, aspirin, mercury and other heavy metal poisoning and vaccines. Leaky gut syndrome is not often recognized by physicians and the medical authorities are busy lynching Dr. Wakefield and colleagues for their work suggesting that the MMR vaccine is one of the principle causes of leaky gut syndrome.

A double-blind administration of 200 mg elemental magnesium per day to 25 children produced measurable decrease in hyperactivity over 6 months compared to control.[4] A case can easily be made that substitutes what allopathic medicine considers background genetic disposition for nutritional deficiencies. According to Dr. Ellen Grant, nearly all the autistic children tested at Biolab had zinc, copper, SODase and magnesium deficiencies. We know that mercury displaces essential elements like magnesium, selenium, zinc and copper from cells causing disruptions of enzyme systems in the process. So we can expect, when we correct nutritional deficiencies, that we will see a reversal in symptoms.

Magnesium deficiency measured in 95% of 116 Polish children
with ADHD: 78% low hair, 59% low RBC’s, 34% low serum.[5]

Mark Sircus Ac., OMD
Director International Medical Veritas Association
http://publications.imva.info

Special Note: When we really look hard at the fact that less than 14 percent of boys and 12 percent of girls had adequate intakes of magnesium we have to concede that contemporary medicine is built on quicksand. Meaning its basic premises are without foundation. It does not take much mathematical intelligence to assume that healthy children would be the most magnesium replete and that the more severe the decline and deficiency the worse neurological symptoms and behavior will be. Magnesium deficiency is the root cause of many diseases in children. That does not say that other mineral and vitamin deficiencies will also not be causes nor does it take anything away from the tragedy of the chemical, heavy metal and radiation exposure that our children have to suffer through.

Hbot day 6

Nathan has now completed 12 Hbot dives!

Today when I talked to him on the phone, I told him how much I missed him. I asked him if he missed me too. I heard a very very clear “Yeaaaaaaaaaaahhhhhhhhhhh”. He was so sweet!

Daddy reports that he behaved perfectly both in the chamber and during suit therapy. His therapist works with him outside where all the ladies are and he’s the center’s darling already. They all love him. Daddy also got him a soy chai latte and George his therapist used it to reward him for good work.

At dinner he refused his own food and ate most of daddy’s food. He went on the carousel twice and hung out at the Irvine Spectrum at night.

It sounds like he’s one happy little boy 🙂

Blog Shout Out

My friends, I have an important announcement to make:

My MOM is now a BLOGGER!

She has a fabulous blog up which I promise you will enjoy.

365 Projects

Please stop by and check out her articles, they are fabulous! And if you like what she’s writing, follow her on twitter and/or add her RSS feed to your Reader account.

ENJOY!

Update on my adventurers

I talked to Owen a little while ago and he said they had another fabulous day. 2 dives, 3 hours of suit therapy, and a whopping GFCF meal at PF Chang’s. He said Nathan was really happy the whole day and he didn’t hear a peep of complaining out of his mouth. Everyone kept on commenting on how different Nathan is when he is with daddy than when he is with mommy. He’s a tough little guy with daddy, and a spoiled brat with mommy. Just the way I like it 🙂 So Nathan has now completed 10 HBOT dives at pressures ranging from 1.3 and 1.5 Now that Nathan is better I am hoping they will go up to 1.75. Good night everyone!

Bits

Lately I’ve been thinking in “bits” and I think I will write in here more “bit-like” blogs. So here are today’s bits:

* Nathan’s 7th and 8th dive went GREAT! He is having a BLAST in Irvine with Owen. He is so excited to be on an adventure with daddy. He did 4 hours straight of intensive therapy with hardly a complaint. Didn’t cry at all in the chamber. Owen is also enjoying his time with Nathan – they went out to the Irvine Spectrum last night which is Owen’s favorite mall. He’s stressed out as he’s not getting enough time to work, but they’re hanging in there.

* I am missing my boys but enjoying this time! I’m going to use this time to finish the house and to learn how to cook!

* About my “getting real” post – I wanted to write a little bit about the “other side”. However, I am currently in the best place I’ve ever been in the journey. I am very happy. I do not feel sad. I do not feel angry. I do not feel sorrow or grief. I HAVE experienced these things and I wanted to share about them. But today, right now, for the last few weeks – I have been so happy, so grateful, in a place of deep, peaceful acceptance. It has been quite a journey to get here, and looking back at those painful moments and even experiencing pangs of pain every once in a while remind me to be grateful for how I feel most of the time these days.

* I am now 30 weeks pregnant with Belle! No new news in the Belle department – tomorrow is my next OBGYN appointment.

Okay, back to work!

Getting Real

I’m going to quote from Amy’s blog:

Today, Melanie over at Better Than Normal posted “Everything Out On The Table”. She’s overwhelmed, depressed, and coming to the realization that she’s “not the super mom she wanted to be.”

Last week Katy over at Bird On The Street posted “Jealousy Jane”. Sharing the difficulties of seeing other families with multiple children, all healthy, and we don’t even have one healthy kid. She quickly followed up the next day with “Counting My Blessings” because she is not about being negative. Just real. Admitting the struggles we all face as the moms of special children.

Amy, Eli’s mom, also joined in by sharing about her own fears and experiences.

I figured I’d jump on this boat too.

* I feel a murderous rage when I think of how Nathan’s neurosurgeon injured him further. If I ran into that guy today I think I would physically hurt him. The child already had a lot to deal with – why did that @sshole piece of $hit have to hurt him even further?

* Nowadays I live day by day and don’t allow my mind to think of the future. Day at a time. But when it goes there and I can’t stop it – days when I’m tired, days when I’m stressed – it scares the crap out of me. Sure he’s a lot of fun now, when we can carry him and toss him around and chug him along with us wherever we go – but what will life be like when he is 80 pounds?

* I suffered sooo much when Nathan was little. I simply couldn’t accept his disability. I was determined to fix him. Realizing that I simply couldn’t fix him shattered me to pieces, and I’ve spent the last couple of years trying to rebuild myself. Today I feel much stronger, but it was sure a hard, heartbreaking, lonesome journey.

* Sometimes I 2nd guess myself. I posted a couple of days ago about my view on rehabilitation. There are days, however, when I wonder – am I holding Nathan back by not picking one thing and sticking to it? I try to be strong and believe in my choices but sometimes I wonder…and that wondering is so painful because then I feel responsible for his lack of progress and development.

* My extremism towards Nathan’s rehabilitation has put such a strain on my relationship with Owen. It has been so difficult for us at times – making tough decisions, especially as we have such opposite views about Nathan’s care, has almost torn us apart. We have managed to become stronger through it all but it has been a STRUGGLE. There were times where I just didn’t see how we could pull through. It’s not just the big decisions, it’s the little day to day things. Fortunately our love of each other is so huge that we’ve survived, but I could write a book about all we have gone through and managed to overcome.

* I have gone through moments where I just want to shake Nathan and tell him to just get over it! For example, his aversion to being put on the floor on his back or belly drives me crazy! The moment his butt hits a surface, he goes into instant whiny mode. I know this is holding him back and I just want him to get over it! Those moments I forget just how hard every movement is for him and I just can’t understand why even turning from his back to his side is so hard – it seems so simple! I know it’s not, but it sure gets me frustrated sometimes.

* I’ve been in counseling since before Nathan’s birth. Without my counselor and support team – My mom, Owen, Miranda, Dr. Kenny, my chiropractor, and occasional massages – I don’t know if I could’ve made it through this journey. Literally. There were times were the only choice seemed to be to jump in my car and drive far far away. But with their support, I managed to stay put. Thank God.

Real enough?

Hbot take 3

Owen and Nathan are on their way to Irvine right now for Hbot take 3. I finally accepted that I’m, well, too pregnant to keep running around. So Owen was wonderful in being wiling to step in and completing this treatment with Nathan. He took his whole office with him and is planning on working from within the chamber and when Nathan is having suit therapy.

They’ve only been gone a little while and I already miss them terribly! But I have big plans for this week – NESTING!

Belle’s nursery has been pinkified, her furniture is in, the living room has been painted, most of the furniture is on it’s way, the garage has been completely reorganized and we even dumped a whole uhaul truckload of stuff at Goodwill. This week I plan on finishing everything else! So it’s not really a rest time but at least I’ll get to focus on just one thing. Hope everyone had a great weekend!

Marcela’s Views on Rehabilitation

People often ask me why I do so many things with Nathan instead of sticking to one and committing to it.

The answer is simple: I do not believe that any ONE therapy can address ALL of Nathan’s needs. Nathan’s cerebral palsy affects him in every way therefore his needs are varied and multi-faceted.

Below is a chart that I keep referring to and building on. You can’t read it here, but if you click on it and go to Picasa, and use their ZOOM function (top right with a + sign and magnifying glass), you will be able to see the picture more clearly:

I believe brain rehabilitation for a child as profoundly impacted as Nathan includes the following categories:

– Brain Repair
– Brain remapping
– Biological
– Structure
– Energy Work
– Exercise / Movement
– Communication
– Social / Emotional

I’ll describe what role I believe each one of these categories plays in the “big picture”:

Brain Repair

These are therapies that work on the brain itself without requiring participation. They work on a very subtle level by creating new brain cells, repairing damaged cells, and awakening dormant cells.

Therapies that belong to this category are: Hyperbaric Oxygen Therapy and Stem Cell Therapy. These are therapies that rehabilitate the actual cells of the brain. Stem cells create new brain cells and by having more cells available, improves the ability of the brain to communicate and function. HBOT improves oxygenation to the existing cells thus repairing damaged cells and awakening dormant cells.

Brain Re-mapping

The brain contains specific areas allocated for predetermined functions. For example, the occipital lobe handles vision. The basal ganglia coordinates movement, the cerebellum balance. Sometimes these areas are poorly developed. Therapies in these categories are meant to improve the definition and efficiency of brain mapping to improve bodily functions.

Therapies in these category include: Cuevas Medek Exercises, Anat Baniel Method, Institutes for the Achievement of Human Potential. These therapies give the body sensory input in order to improve the brains connectivity and efficiency in processing stimuli. These therapies improve dendriditic connections and density, thus leading to improved neural communication.

Biological

In order for the body, specifically the central nervous system, to work at optimum capacity it has to have proper nutrients and biochemicals, such as neurotransmitters. Sometimes, however, the body cannot produce specific biochemicals or is not communicating effectively due to improper nutrition or damage in the genetic code. This area addresses nutrition in order to maximize bodily function as a whole – not just the brain. For example, if the digestive system is impacted, the immune system suffers, thus affecting the central nervous system. So in this area I address the body as a whole by optimizing the quality of foods and supplements consumed.

Therapies in this category include: Biomedical, nutrition, and G-therapy. Biomedical includes identifying food allergies and other irritants, detoxification, and proper supplementation. Nutrition relates to proper diet with healthy organic, natural foods. G-therapy is a homeopathic treatment that stimulates neurotransmitters and acts as a nerve growth factor. Together these treatments help to ensure that the body and central nervous system has the proper nutrition, minerals, herbs, etc to function properly.

Structure

When there is a brain injury, the child doesn’t move the way a typical child would, and this affects how the structure of the body develops. This in turn affects messaging to and from the brain, which again results in functional loss. It also leads to lots of pain and problems if a child develops problems like scoliosis, hip dysplasia, etc. This section addresses the structure of the body, including proper alignment of the spine as well as proper alignment of every part of the body. With incorrect alignment comes loss of function, so therapies in this section seek to improve structure in order to maintain health and to improve function.

Therapies in this section include: ABR (Advanced Biomechanical Rehabilitation), Osteopathy, Rolfing, Chiropractic, and Yoga. Each of these provides feedback to the body in order to preserve and/or correct alignment of the body.

Energy Work

The body has an innate ability to heal itself, but if there is a breakdown in energy flow, problems follow. This section addresses the subtle body and seeks to preserve and maintain overall health by enhancing energy flow.

Therapies in this category include: reiki, acupuncture, and body talk.

Exercise / Movement

Typical children spend the vast majority of their days running, jumping, playing, moving, exercising. Children with even mild movement problems may have difficulty engaging in these activities. Especially in the early years, the brain requires movement and proprioception to form connections and to enhance its development. The body also requires movement to remain healthy. Therefore therapies in this category are meant to keep the body healthy and to stimulate the brain.

Therapies in this category include: Suit Therapy, physical and occupational therapy, aquatic therapy, and hippotherapy. Notice that I am including physical and occupational therapies in this category. I believe these are valuable therapies in that they provide exercise and feedback to the brain, and can be very effective especially with children with mild injuries. But I believe that children with severe injuries need more intense interventions that address the brain.

Communication

Obviously it is important to address the child’s ability to eat, swallow, talk, and communicate. These improves brain development plus their quality of life.

Therapies in this category include: Vital Stim, Beckman oral motor exercises, speech therapy and augmentative communication therapy.

Social/Emotional

A brain injured child is first and foremost a child and also needs time to play and socialize! I believe this is a key part of the mix. A happy child can overcome immense odds.

Summary

Even though there may seem to be overlap in some of these categories, each of these addresses different needs of a severely brain injured child. I believe it is important to address all of these.

In this list I have only included the therapies that I have found to be effective in their categories. More could be added but I have only chosen ones that make sense to me, that are theoretically sound, and that have had a positive impact on Nathan and/or on other children.

In some cases I do more than one therapy per category. I believe that it is all feedback for the brain and the more we stimulate the brain, the better. When possible I try to stick to one therapy per category or to select complimentary ones, but it all depends on life circumstances. For example, if I cannot do CME, I choose another therapy in that category. Other times I combine them and will choose one therapy per category every week or every two weeks. For example, week 1 he may have reiki, week 2 acupuncture, week 3, bodytalk, week 4 reiki, etc. I believe in this way we are stimulating the same systems in different ways and keeping the brain active and responding at a higher level.

I know many people choose to find 1 or 2 things that work and they stick to those 100% of the time. But me, well, I like to view Nathan’s rehabilitation as a holistic approach and believe that doing a little bit of everything will bring him the most benefit!

DISCLAIMER: I am simply talking about what I believe works for us, and for Nathan. Everyone has their own views and experiences and knows what work for their children! I just believe that sharing knowledge is helpful as it may spark ideas for others. I don’t think rehabilitation is a one-size fits all sort of thing – it’s just whatever works best for you, your child, your familiy! This is what I choose for mine!

Exhaustion

That’s the woooooooooooord of the day……….exhaustion.

It’s been a rough couple of days. We took Nathan to see Dr. Feldman first thing yesterday morning and she said he has lots of congestion in his nassal passageways and throat. That’s why he was crying in the chamber. So we took yesterday and today off and the plan is to see how he’s doing so we can try again Monday.

Next week Owen is going to Irvine with Nathan for Hbot take 3! I’m excited that they’re going to do this together.

In the meantime, I leave you with some cuteness:

Hbot Day 3

Maybe I jinxed myself. Yesterday I mentioned how well Nathan was doing with his Hbot. Because today, it was a total disaster.

We put Nathan in the chamber – as usual. Everything was the same. Then about 15 min’s later Kathie, Nathan’s nurse, went to find me to tell me Nathan was really upset and screaming in the chamber, so they pulled him out. I asked them to try again, but it was the same thing – after a few minutes, he started screaming bloody murder. We didn’t know what to think of it, so I took him to the RV and he took a nice long nap. We thought maybe that was it – he was just tired.

So after lunch and his nap, he went for his suit therapy. He was happy as can be! I was shocked to hear that he hardly cried during the 2 hours of suit therapy! He’s supposed to do 4 hours every day, but because of the crying incident, we allowed him to sleep and he only had 2 hours of therapy. As you can see, he’s happy as can be:

After suit therapy he had a snack, some water, and it was time for another attempt at HBOT. He was happy at first:

But about 15 minutes into the dive, he started screaming again. It wasn’t an annoyed cry, it was an blood curling, agonizing scream. So we depressurized, pulled him out, gave him water and hugs, tried again – same outcome. At that point we gave up for the day.

This is one of those times I really wish he could talk, so he could tell me what hurts.

So I decided to drive home to take him to his doctor in the AM, so we can at least rule out ear or sinus infection. If those are negative, then we’ll head back down and simply try again.

I’m “melt into a puddle” kind of exhausted, and gonna have an early night. At least I get to sleep in my bed tonight! Sweet dreams!

HBOT day 2

We’re finishing our 2nd day of HBOT and it’s going good so far!

Last night went well – nobody disturbed us where we parked. Today we got permission to park outside of the therapy center so we’re excited about that! I don’t think I could’ve handled another sleepless night.

For those of you wondering what I’m talking about – we drove a friend’s RV to the therapy center and we’re staying in it. The reason is that it’s so convenient to have the RV parked at the therapy center – we can take naps during the day, cook, eat snacks, and have everything we need handy! It also means I don’t have to drive that monster car at nights which is a lot less stressful! The nearest place to park the RV and hook it up is about 30 min’s away and I am trying to avoid that at all costs. So we are staying in the RV parked outside of the therapy center and it’s working out well! Nathan doesn’t mind being in the RV, but I do think he misses his house, dad, and routine. He’s been a cranky monkey for the last couple of days.

He’s only had 6 hbot treatments so far – and he really likes it! The pressure doesn’t bother him at all and he LOVES that he gets to watch movies while in the chamber.

He did a couple of hours of suit therapy today. He wasn’t happy at all to have to work again – he’s been on a 2 month vacation from physical therapy! So he was pretty cranky.

On a little side note..I’ve been trying to teach him to spend time on his back happily. Typically the moment he is put on the floor on his back or belly he starts complaining. So I’ve been trying to do it while we’ve been in the RV. This afternoon I put him on his back and he started complaining instantly. After about 15 min’s of whining, I noticed he was quiet. I was like…hmmm… I checked and this is what I saw!

He rolled from his back to his side, got his hand around the ball and pulled it close to his mouth, then used the ball to prop his arm against it so we could chew/suck on his hand. That boy! It was so cute, he was so proud of himself! Again, I know it doesn’t sound like much, but for him it’s great, it showed him that even though being left on his back is hard, he CAN use his body to find entertainment.

The Adventure Continues

I’m writing this from my phone so I’ll keep it short and sweet.

We’re back at the California hyperbaric Center to continue hbot/ suit therapy after Nathan’s sick remission. We made it early this morning without any problems. Nathan did 2 dives today, but no suit therapy – that starts tomorrow.

We’ve parked the RV outside Irvine Medical Center in hopes that we won’t be bothered over night. Pray we may stay here undisturbed! otherwise the closest place to park is about 30 min’s away.

I have high hopes for this treatment!

Wayback Saturday

I ordered Belle’s crib bedding set, and seeing this picture of Nathan reminded me of him in his crib way back when.

Setting up the Bellemobile reminds me of Nathan when he used his bliss blue stokke.

The thing on his head is the external shunt. This reminds me of how far he has come! In this picture he was still in the hospital with a hole in his skull draining out fluid. This was also his first time eating cereal.

And here he is standing so straight and tall!

And his one..well…just because!

Compulsion

If you haven’t noticed I’m trying to figure out how many 1 word subjects I can come up with 🙂

Today’s topic is compulsion. Particularly, my compulsion to NEST! This is coming from someone who hasn’t spent a second thinking about house appearance in a long long time…all of a sudden, it’s all I can think about! Getting the nursery ready, getting the house ready, getting clothes for Belle…it’s taking over my psyche!

The progress is slow but steady.

From 2010-02-12

I’ve cleared out the room completely. The crib on the right will be her crib. The bassinet on the left will be in our bedroom and will be where she’ll sleep when she comes home. In the middle you can see the Bellemobile. Her goddess red stroller is ready and waiting for her! It was the first thing I got for her 🙂

And since my mom was making fun of me, saying that at this rate she’ll be riding naked in her stroller…we went shopping to get her some outfits!

From 2010-02-12

The other thing I have ready for her is jewelry. I know I know, jewelry for a newborn? Like I said, I am not responsible for my actions any more, they are fully motivated by hormonal impulses!

From 2010-02-12

The photo quality on these is terrible, I couldn’t zoom in enough, but you can get the idea. It’s a little bracelet with a pearl, a sheep, and her name engraved in the band.

From 2010-02-12

This will be her first pair of earrings. In Colombia it is traditional for newborn girls to get their ears pierced in the hospital. I’m not sure I can get the hospital to do it but if not I’ll find a way. But as soon as she comes out, she’ll be sporting beautiful little diamond-studded earrings!

And another pair of earrings:

From 2010-02-12

And the most important news…we have an OB! We’ve had some doctor issues. The thing is..with what I’ve been through with Nathan, I’m not the typical patient. I know what I want, and instead of showing up to a doctor’s office and doing as I’m told, I show up and tell them what I want. I’m finding most doctors don’t like this 🙂 So when I got back from Chile I started doctor shopping – I wanted to find someone that I could get along with that would respect my wishes. The first doctor didn’t cut it. The 2nd was okay but something didn’t feel right. The 3rd was the perinatologist who delivered Nathan, otherwise known as the grim reaper. I figured I should have him deliver Belle just in case anything went wrong, but he found out I’d been doctor shopping and canned me.

So today I went to a 4th OBGYN and I really liked him. He’s a bit of a firecracker, figured out real quick where I am coming from, and was cool about doing things my way. He has privileges at Northridge Hospital, which is the closest hospital with a NICU, which is fantastic. We talked about doing the amniocentesis, but in the end decided against it. My only reason for doing it would’ve been to determine who we needed present in the delivery room. But he told me that if Belle had any major heart defects we would already know, therefore the results of the amnio wouldn’t tell us anything different. And since the hospital where he’ll deliver already has a NICU, it won’t impact anything else. If Belle has down syndrome, she doesn’t have any of the organ or heart defects that come with it, so her delivery will be a normal delivery.

So Belle’s got herself a doctor! Right in the nick of time … I was minutes away from saying to hell with it and having her at home by myself! Hehehe.

Princess Belle is doing great. She is active, measuring exactly where she should be, her heart looks good, her brain looks good… so other than the echogenic foci, she’s in great shape. Her femur is still measuring 2 weeks ahead so we know she’s gonna be tall like her daddy!

And talking about compulsion, I feel compelled to go online and look at more baby supplies! Have a great Friday night!

Perspective

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 ax t2 gre s
From o-ax t1, flair
From o-ax flair
From 3 pl t2 fgre s

Here are a couple of examples of a healthy brain:

When I look at these pictures it reminds me of just HOW amazing Nathan is. You don’t need to be a neuroscientist to see the abnormalities in his brain. This is a child with not only severe holoprosencephaly, he has suffered damage from hydrocephalus and bacterial meningitis. I can easily name 50 things wrong with his brain. And if I wanted to start labeling all of his diagnoses,well, it would be a long post indeed.

I am just awestruck by just how extraordinary Nathan is! He is so smart, so funny, so sweet and sensitive. He’s so curious and loves to learn. He understands SO MUCH. He eats like a champ (have I mentioned that he’s now 28.5 lbs??!!). He’s starting to say words consistently: more, elmo, agua (water), nalga, orange, mama…today he even said BELLE! He laughs at everything. He only takes 1 prescription medication. Hasn’t been hospitalized in 2.5 years, and has only had shunt surgery. He is passionate about books and loves watching people. He is the biggest love/cuddle bug in the planet!

I know he hasn’t made much progress in motor skills…but when I look at those pictures of his brain and look at the child in front of me, I feel so much gratitude! He has overcome SO MUCH to be the extraordinary little boy he is today. I used to think that I would only feel truly happy when I’d gotten Nathan to some degree of physical functionality. I was so wrong! This child gives me so much happiness, just from being!

Talking about fun, today we went shopping for newborn clothes for Belle! We went with Nathan’s grandma, great-grandma, and greatauntma and they helped us pick out a bunch of outfits. Nathan had such a great time – he looked like a little prince surrounded by his adoring entourage. He is feeling much better – the doctor saw him and said his ear infection is clearing nicely and his chest is fully healed – he’s off all breathing meds. We’re just finishing off the antibiotics. We plan on heading back to Irvine Monday morning to continue our HBOT/suit therapy adventure!

Rambunctious

My brain’s a bit rambunctious today. I have a whole bunch of stuff I want to talk about and I just don’t know what to pick. So I’m going to say a bit of everything.

* I got caught playing the “doctor switcharoo” game. I’ve been trying to find a good OB for Belle and have been to 3 or 4 and I got caught, now the perinatologist doesn’t want to see me. Ooops.

* Talking about OB’s, I’ve decided to have an amnio. Now I just have to find a doctor to do it. If there’s one thing I have learned with Nathan, it’s that I have to be prepared and I cannot trust doctors! So I want to know if she’s going to come in with any issues so I can be prepared. If she’s positive for down syndrome, then it’ll change what hospital and doctor delivers her. So it won’t really change how I feel, at least I can start sharpening my fangs and getting ready if I need to be 🙂

* My office is now in my bedroom, and there’s now an empty room in my house for Belle’s nursery! The redecoration has begun!


(Yes our dogs sleep on a queen size mattress at the foot of our bed and that’s Lola hidden under the covers 🙂


(I emptied the office but didn’t have a chance to start cleaning it out and taking stuff down, so this if Phase 1 of Belle’s nursery!)

* And the last thing about Belle … I’m now 28 weeks – the beginning of the 3rd trimester! How exciting! And how very very uncomfortable.

* Nathan’s been super duper whiney so I’m thinking he may not be over his ear infection just yet. We’re going back to the doctor tomorrow. I’m still planning on getting down to Irvine for hbot/suit therapy as soon as possible!

* If you feel like you need a smile, head over to Trevor’s site and check out this super cute video:

Pleaseeeeeeeeeeeeeeee

* I started a woman’s class called A Woman’s Truth. I went to a few classes last year but my attendance was awful. This year may not be much better but I have to try! The first class was on Saturday and I loved it. Miranda, the facilitator, had us determining what obstacles we have to taking care of ourselves. We had to dig really deep into ourselves to find out why it is we don’t give ourselves the time/energy we deserve. She mentioned over and over again that as mothers we tend to be “self sacrificing” and to think of others first, and we leave our needs last. If our well is not full then we really don’t have much to give. So she encouraged us first to identify our obstacles so we can start working on overcoming our obstacles throughout the year. Mine is: TOO MUCH TO DO! I always think DOING is more important than BEING. So if I have a 30 min pocket I find a hundred things to do with it, instead of doing the things I need to do for myself, like exercise, meditation, rest, etc. So my intention for this year is to change from a human doing and become a human BEING.

* Talking about goals…I’ve been thinking a lot about what I’m doing with this blog. Why I do it. What it means. Katy talked about this today as well and it motivated me to talk about it too. I feel like I need a “mission statement” for this blog, a clear picture of why I am here. I am totally open to hearing your thoughts or suggestions on what direction you think this blog should take. More life/chit chat? More sharing of information? Less/more posting?

* Here’s Nathan getting on the bus today. He needed another clothing intervention this morning 🙂

* Oh, and I accidentally cut my hair short. REAL short. Sorry, no pix yet, I have to get used to it first! Owen disowned me. But he’ll live. Me….I can’t say I love it….but I DO love the low maintenance and practicality!!!!

Enough ramblings for today, I’m going to go take care of myself and do my FitMama workout!

A gift of sleep

This morning I managed to drag my tired butt downstairs before Owen put Nathan on the bus. I found him wearing pants that were way too short (just under his knees!) and socks that were MINE. Yes, you heard it right, Owen somehow though that those socks were Nathan’s and okay for him to wear – even though there were about 20 sizes too big. I almost passed out laughing. The socks hung over his shoes and the pants dangled just below the knee. It was so comical. Thank God it was the one day I managed to get up before he left for school.

Talking about the mornings…Owen has been such a super star lately. He has “taken over” the mornings with Nathan. He sets his alarm, wakes him up, bathes him, occasionally brushes his teeth, feeds him, packs up his lunch bag (which contains random things like eggs and yogurt(!!) (yes Owen you got caught the teacher told me) as a snack), and puts him on the bus. My tired sleepless pregnant butt and I get to stay in bed until about 9 am when I really can’t justify staying in bed another minute. THANK YOU OWEN! I guess dirty teeth, humongous socks, short pants, and dairy snacks are a small price to pay for the extra sleep 🙂

And talking about school…I got this report from Nathan’s teacher today:

Nathan had a great day. We started with APE on a huge airflow mattress. This was to work on balance and he appeared to be having fun. He then ate his snack and today, he chose his yogurt more than his drink. He ate the yogurt completely. We moved on to circle time.

I had a variety of pink objects (a pink doll, pink pig, pink slinky, pink beads, pink powder puff. His favorite was the pink slinky which he asked for by saying “more” several times. It was on to the stander first for integration into Tanya’s class and then for art time. He and I made a Valentine by putting tissue paper on a sticky surface.

He worked very hard and diligently at pushing and grasping in order to move the papers into position. You will see when we send it home on Thursday.

This kid really really really loves school. He must get that from me 🙂

Confessions

The only makeup I own was given to me by my then 10 year old niece (who is now 13)

I own 4 pairs of shoes – tennis shoes, Birkenstocks, fuzzy merrels for when it’s cold, and uggs for when it’s colder. That’s my entire shoe repertoire

My purse is nathans diaper bag. I own no purses.

We don’t have a blow dryer or an iron in our house.

I not only enjoy, I LOVE studying and learning – yes, I am that geeky

New study published on vaccines

Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing Hepatitis B vaccine: Influence of gestational age and birth weight

This is an interesting publication further proving the relationship between vaccines and neurological problems. It also takes into account birth weight and gestational age.

The conclusion is that there IS a correlation between vaccines and the acquisition of reflexes. Vaccinated primates acquired their reflexes much slower than non-vaccinated primates. The most delayed where infants with low gestational age and birth weight.

And the evidence accumulates!!!

More Merry Muscles

Guess what? I found out today that there is a size 2 Merry Muscles! How very cool is that?

Here’s the link: Merry Muscles for Special Needs

So for all of you who were interested but were worried that it would be too small for their child -worry no more!

We’re sending ours back so we can get the size 2. I can’t wait.

I really really really like this for Nathan. It’s a way for him to be upright, for him to receive vestibular stimulation, to connect movement in his body with movement in space. Plus he enjoys it! We put him in it while watching TV and he’s the happiest camper – and honestly, if he’s gonna watch TV, I’d rather him watch in the merry muscles than sitting on the couch, wheelchair, or in any other position. All in all – a win win situation!

And for those of you wondering how Nathan is doing … this video was taken today, so you can see for yourself what a quick recovery he’s had!!!

Becoming…

If I thought of who I was 4 years ago, I never ever ever ever would’ve guessed I’d be who I am today.

4 years ago I couldn’t find the vegetable aisle at the supermarket if my life depended on it. I thought a great meal was finding dollar frozen meals at the supermarket. I thought my mom was crazy the day she talked about eating organic food and told her she might as well just burn her money. 4 years ago I would feel pity when I saw someone in a wheelchair.

Today I look at who I am becoming and I honestly wonder where this person came from! How is it that someone who ate her first vegetable at the age of 18 is now almost fully following a GFCF diet? How is it that someone who doesn’t know her lungs from her kidneys can play “doctor” to a little boy?

Other times I feel that my whole life has been a preparation for who I am becoming. I remember moments of knowing that I was being “made ready” for something big, huge…to be Nathan’s mother. So many events only make sense when I see them from the perspective of being Nathan’s mom.

And you know what… I wouldn’t change a thing about who I am becoming, who Nathan is shaping me into. Being Nathan’s mom is the best thing that’s ever happened to me.

A new view

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 I had dumped (well, parked to be exact) the RV at s residential street, jumped in Sienna my minivan (which Tosha drove down yesterday), and was in the car zooming home.

Nathan saw Dr. F and she diagnosed him with a double ear infection, an upper respiratory infection, and mild bronchitis. He’s on albuterol breathing treatments, pulmicort, and amixycillin for the ear infections. My poor baby.

Needless to say the Hbot/Imot program has been postponed until further notice. – hopefully by next Monday the 15th the adventure can resume.

Now if somehow the RV could magically appear outside my doorstep 🙂

The view from here

After many trials, we made it to the California Integrative Hyperbaric Institute. It was an absolutely terrifying experience as I was driving a 32 foot motor home and, well, it was terrifying. But we’re here and it’s all good. We didn’t make it in time for the first HBOT and suit therapy treatment this morning – it took way too long to get out the door and to drive down – so Nathan only did one HBOT treatment today. Tomorrow we start the full routine. So exciting!!!

Here’s the view from here:

Nathan playing with his uncle Esteban

We saw my two little brothers over the weekend. Esteban was PHENOMENAL with Nathan. He got down on the floor and played with him any way he could. When we put Nathan on his belly – Esteban got on his belly. When Nathan was on his back – Esteban got on his back. He kept touching his face and saying “He’s so cuuute, so cuuute.” It warmed my heart to watch them. What a wonderful baby brother I have, I’m proud of what a good heart he has 🙂

A series of fortunate events…

…is leading us to the California Integrative Hyperbaric Center. Tomorrow. Yes, I mean like, Nathan will be finishing his first Hyperbaric dive in 12 hours. I’m a bit stunned by the speed of it all, and excited. Very excited.

I’ve posted here how much I’ve wanted Nathan to receive HBOT. But circumstances never allowed it in the past. This time we were guided and it all worked out beautifully.

Tomorrow morning at 6 am we will be taking my friend Aixa’s RV down to Irvine, where we will park it outside of the therapy center. By 8 am Nathan will be in the chamber receiving his first HBOT dive at 1.75 ATA and 100% oxygen. At 9:30 am, he will start working with a therapist from NapaCenter.org . Napa recently affiliated with the CIHC to run their intensive physical therapy program. So Nathan will get the benefit of both HBOT and Intensive Suit Therapy! He will receive 4 hours of physical therapy and then a 2nd HBOT dive in the afternoon. We will be down there for the whole month of February.

Okay, I can hear what you’re thinking from way over here. WHAT? I thought you said you were going to keep still for a while, and were done running around doing therapies. Now this??!!!

Unfortunately I’m not at liberty to disclose the details on how it worked out, but it did, what I can say is this was sent as a gift to Nathan. So off to Irvine we go. The good thing – it’s only an hour from our house, so we can come and go, and we don’t have to travel. We will be staying in the RV for the most part, but if for any reason we feel like coming home – it’s a relatively short drive. I just know I can’t make the drive every day, so we’ll be staying there most nights, and coming home on weekends.

Another exciting thing – we can do ABR in the HBOT chamber. So for 1 month he’ll get 2 hours of ABR, 2 hours of HBOT, and 4 hours of suit therapy! The HBOT and ABR will be painless for him and will require no effort. The suit therapy will be hard but I think he is ready for it. By the end of this week I’ll know!

Now I have to go and get us packed and the RV loaded and ready. I’ll write more tomorrow during Nathan’s first day! Wish us luck and send some prayers our way!