Archives for October 2009

Buenos Aires here we come!

Guess what… we are going to Argentina! By the time you read this post, we will probably already be there 🙂

It’s only a couple of hours away from Santiago, so we figured we’d spend Halloween in Buenos Aires with my cousin Claudia. We leave at noon Friday and return Sunday evening. Nathan and I are both excited!

I’m not sure how much blogging I’ll be able to do in the next 3 days, but I promise to post photos and an update as soon as I can.

In the meantime, have a wonderful Halloween weekend! We love you guys!

A Fine Line

I couldn’t have said this any better, so I won’t even try:

A fine line, by Charlie’s mom Katy

Thanks Katy for saying this so well and clearly.

World Congress on Disabilities

World Congress on Disabilities 2009 Educational Seminars

Keynote Address: General James T. Conway, 34th Commandant of the U.S. Marine Corps,
Thursday, November 19, 10:00AM EST

Lennox-Gastaut Syndrome: Implications for Care Coordination
Thursday, Nov. 19, 9:00AM – 9:50AM EST
Blanca Vazquez, MD, Pediatric Neurologist, NYU Medical Center, Comprehensive Epilepsy Care Program

Seizures & Seizure Management: Confirming Diagnosis and Assessing Treatment
Friday, November 20, 11:30AM – 12:20PM EST
Steve Wolf, MD, Beth Israel Medical Center, NY
Patricia E. McGoldrick, NP, MPA, Beth Israel Medical Center, NY

Seizures & Seizure Management: Brain Mapping & Surgical Intervention
Friday, November 20, 1:15PM – 3:05PM EST
Saadi Ghatan, MD, Columbia University College of Physicians & Surgeons, NY
Patricia E. McGoldrick, NP, MPA, Beth Israel Medical Center, NY
Steve Wolf, MD, Beth Israel Medical Center, NY

Hyperbaric Oxygen Therapy – its Efficacy and Safety in the Treatment
of Cerebral Palsy, Autism and Traumatic Brain Injury

Friday, November 20, 3:15PM – 4:05PM EST
Pauline Filipek, MD, University of Houston Medical School, TX
Daniel A. Rossignol, MD, International Child Development Resource Center, FL
James Jeffrey Bradstreet, MD, International Child Development Resource Center, FL
Moderated by Rick Rader, MD, Morton J. Kent Habilitation Center, TN

The best part…it’s free! And you can register and download it later, or view it live online.

Click here to register…and then mark your calendars to join in live online.

Holland

I’ll start today’s post with a video of Nathan in therapy this morning:

[youtube http://www.youtube.com/watch?v=QCeEXQWitmo&hl=en&fs=1&rel=0]

Doesn’t he look good! I’m really happy with how he’s progressing. Other than my emotional blip last week, I’m pleased with the tiny changes I see every day.

Last night while I was laying in bed trying to sleep I kept thinking about Holland. There is a poem by Emily Perl Kingsley called “Welcome to Holland” that so many mothers seem to identify with. It compares having a child with special needs with going on a trip. You buy tickets to Italy and all of a sudden find yourself in Holland. The premise is that even though Holland isn’t as colorful as Italy, it has it’s own quaint beauty.

I don’t know why this bothers me so much! The support there is around this poem makes me feel that we have all collectively agreed to “accept” second best. Given the choice, not many people would choose Holland over Italy. If you have no other choice you can learn to accept Holland and see the beauty in Holland. But you still wouldn’t choose it and you would still always wonder what Italy was like and always want to travel to Italy. I object to this!

Maybe I felt this way when my journey started, but today I feel like I bought a ticket for Italy but found myself in the Lost City of Atlantis. Something you’d only dreamed of, a beautiful, marvelous, wondrous place. I imagine there are dark corners as well as majestic ones.

It’s not always easy, that’s not what I’m claiming. As you know there are moments when I feel lost and desolate. But those moments are fewer and far between. If you’ve ever traveled, you know what that’s like – you may be in the most beautiful place in the world, then you take a wrong turn and get lost in a bad neighborhood, and things become scary and difficult. But most of the times I feel happy and grateful.

Being Nathan’s mother has taught me so many things. I’ve learned acceptance, I’ve learned gratitude and appreciation. I’ve developed deeper empathy and compassion. I have had to get to know myself and to navigate througth the dark corridors of my mind to find self acceptance, to fish out the better qualities of myself otherwise it’s really hard to get through such an unconventional experience.

Anyways, I don’t meant to preach. I just want to declare an anti-Holland feeling. Nathan didn’t bring me to Holland, he brought me to places more beautiful and amazing than even Italy. And I don’t just “tolerate” my time in Holland, I cherish every moment of this wonderful experience that Nathan has brought me on. And with him as a tour guide, I couldn’t ask for anything more.

Coincidentally, Sonia wrote about something similar today. If you can read Spanish, visit Sonia’s column on Revista Carrusel. If you can’t read Spanish, I hope you can translate it using an online tool – it is a BEAUTIFUL piece on acceptance and gratitude for this experience.

No no no no no

If Nathan could speak, I bet that’s what he’d be saying in his CME therapy. He’s gone back to Mr. Complaney during therapy. The first 3 weeks he was GREAT – he didn’t complain, he did the exercises well and happily. But I think now that we’ve been here several weeks he’s decided not to comply. In any case, this is where discipline steps in. Even if he complains he’s going to have to work through it! It’s a good lesson for both of us 🙂

Here are a few of his exercises today:

Nathan is having…

…a HEALTHY BABY SISTER!!! Meet Isabelle Tara!

Thanks for taking the poll! You guys were right! 62% voted that Nathan was having a sister! It was fun!

The world from their eyes

I went to a class on Saturday with MamaTerapeuta regarding early childhood development. It was fascinating! I wanted to write a summary of some of the things I learned.

* As adults, we need to try and view the world from the point of view of our children. We should try to put ourselves in their shoes so we can understand how they would interpret certain feelings and emotions. In the class, the instructor walked us through the stages of development. We covered ourselves in blankets to simulate being in the womb, then we simulated being able only to lie on our backs and look up at the ceiling, then starting to move a little, rolling from side to side, then moving around rolling from front to back and back to front, etc. It was AMAZING what you learn from doing this sort of exercise! I learned how fascinating simple movement is, how you can enjoy playing with a simple toy for a long time due to the textures and colors, how fun it is to experiment using your body in different ways. If we do this sort of exercise, we can get a much better sense for what it is our babies see and experience.

* Never rush the development of a child. Trying to hurry a 12 month old into walking by sticking him in a walker is ultimately detrimental. It’s best to let children develop at their own pace and they will develop with more confidence.

* Children should spend a lot of time on the floor playing. In fact this should be where they spend the majority of their time. Children develop ALL of their skills (vision, fine motor, gross motor) through play.

* When children are playing, adults should observe and make notes of how their children are developing and interacting with their environment. Instead of stimulating and entertaining them, they should just let them play and take a very passive role, one of observer, not of entertainer.

* Children should never be placed in positions that they can’t get into by themselves. So a 3 month old baby, for example, should be placed on the floor on his back, and left there to play and to learn how to roll on his/her own. Eventually this baby will be able to get on her belly, and back onto her back, etc. But they recommend never to put a baby in a bumbo or on the floor with a boppy as it puts a strain on their back and on their spine and causes them to tense up. This tension then affects their emotions and they learn what it’s like to bring tension into their life – which is not necessary for a tiny baby to experience!

* Always talk to a baby and treat them with gentleness and respect. Don’t pick up a baby from behind as it startles them. Also, they recommend not picking up tiny babies by the armpits as it keeps them upright before they have the back and neck support to be upright. Tiny babies should be cradled until they have stability in their head and trunk. Tell them what you’re going to do and ask them for participation. Diapering and other activities of self care are very important and should be approached with respect and playfulness. For example, when diapering, the child shouldn’t be restricted, they can move along with the process and as they get old enough, help and participate!

* 4 principles: Respect, Independence (for the child), Emotional Security, and Physical Security (of the space where they play).

* Babies that are put on their bellies before they can get to their bellies develop tension in their bodies and spines. It’s best to put them on their back until they can roll onto their bellies by themselves.

* 5 values of child development: communication, exploration, emotional attachment, postural support, social order (values of the family, the times, the country they live in). These principles all relate to each other and affect the child’s development.

* The reason for a lot of these ideas and principles is to protect the emotional state of young babies. Hurrying their development, over-stimulating them, putting them in positions that they are not ready to be in, causes them emotional stress and tension. They assimilate this emotional stress and carry that into their childhood and adulthood. There is a strong body and mind connection, and if their body is tense because they are held incorrectly, their emotions will be stressed and the more stress they feel the more they integrate it into their consciousness.

Here is some info I found on the subject:

“As a matter of principle, we refrain from teaching skills and activities which under suitable conditions will evolve through the child’s own initiative and independent activity,” Pikler wrote in her 1940 book What Can Your Baby Do Already? published in Hungary.

She adds, “While learning…to turn on the belly, to roll, creep, sit, stand and walk, (the baby) is not only learning those movements but also how to learn. He learns to do something on his own, to be interested, to try out, to experiment. He learns to overcome difficulties. He comes to know the joy and satisfaction which is derived from this success, the result of his patience and persistence.”

In short, Pikler had a revolutionary idea that babies — even newborns — are competent individuals with their own agendas, and should be treated with respect.

The basis for putting any of Pikler/Gerber’s ideas into action is a warm, loving relationship between parent, or other primary caretaker, and child. Since babies experience our love during times we spend caring for them, Gerber suggests that parents take the time to make diapering, feeding, bathing and dressing, unhurried and pleasant quality time with the baby being an active partner. With their built-in “curriculum,” babies, given security and freedom, will then spend their time learning just what they need to be learning at any given stage.

“When you approach your baby with an attitude of respect, you tell him what you intend to do and give him a chance to respond,” says Gerber. “You assume he is competent and involve him in his care and let him, as much as possible, solve his own problems. You give him plenty of physical freedom and you don’t push development.”

She adds, “Parents believe they treat their babies with respect. But if you watch well-meaning, loving adults, you’ll see that they will often interrupt their baby’s play without a thought and treat her in other ways that could hardly be called respectful. ”

Recognizing and respecting our babies’ competence also frees parents. Gerber firmly believes that parents don’t need to entertain their babies because given a nurturing environment and freedom to explore, babies are quite capable of entertaining themselves.

When you want to change a diaper, dress or feed, look first to see what baby is doing. If baby is absorbed in an activity and you have the time, try not to interrupt. Look for the right moment to move in. Say something like, “I want to change your diaper now,” and reach out your arms. Wait for a response. Your baby may look up at you or reach out with arms. If your request is ignored, and you have time, you can say something like, “I see you still want to play,” and wait a couple of minutes before trying again. If you don’t have time, you can still acknowledge that baby would rather play but say that you need to change the diaper now, and start doing that. Even if your baby is too young to understand your words, your tone will be associated with your gestures.

Once on the changing table, don’t distract baby with a rattle. Instead, try to maintain eye contact and explain, step-by-step, what you are doing and ask for help: “I’m putting you down on the table. Now I’m going to take off your pants — can you pull your foot out? Thank you.” Or, “I’m going to take off your wet diaper now. Please lift your hips up.”

The once widely accepted notion that parents should stimulate and teach their babies, a practice that Gerber disputes, has also been called into question by recent research. Twenty years ago, if you went to a session on infant cognition, you’d see a lot of emphasis on the importance of adults stimulating infants. Now, the emphasis is on what infants do and on the partnership between infants and adults. This is something Gerber stressed for years.

Of course everything changes when we try to apply this to the realm of children with brain injuries. This whole premise is based on the fact that children will achieve all milestones on their own, even if later. But of course brain injured children may not be able to gain these positions without therapy or assistance so I honestly do not know how this works in our case! But for the parents who have typical children or kids with mild brain injuries, I thought this was pretty interesting information!

A Mental Diet

My mom also sent me this and I wanted to share it on Nathan’s blog. I have believed in this for many years now, and I can guarantee that what this person says is true. With my own experience, I have experienced that my thoughts affect my reality. This is so well written that I’ve republished it, and I share his thoughts 100%:

The subject of diet is one of the foremost topics of the present day in public interest.
Newspapers and magazines teem with articles on the subject. The counters of the
bookshops are filled with volumes unfolding the mysteries of proteins, starches, vitamins,
and so forth. Just now the whole world is food-conscious. Experts on the subject
are saying that physically you become the thing that you eat — that your whole body is
really composed of the food that you have eaten in the past. What you eat today, they
say, will be in your bloodstream after the lapse of so many hours, and it is your bloodstream
that builds all the tissues composing your body — and there you are. Of course,
no sensible person has any quarrel with all this. It is perfectly true, as far as it goes, and
the only surprising thing is that it has taken the world so long to find it out; but in this
article I am going to deal with the subject of dieting at a level that is infinitely more
profound and far-reaching in its effects. I refer of course to mental dieting.

The most important of all factors in your life is the mental diet on which you live. It is the
food which you furnish to your mind that determines the whole character of your life. It is
the thoughts you allow yourself to think, the subjects that you allow your mind to dwell
upon, which make you and your surroundings what they are. As thy days, so shall thy
strength be. Everything in your life today — the state of your body, whether healthy or
sick, the state of your fortune, whether prosperous or impoverished, the state of your
home, whether happy or the reverse, the present condition of every phase of your life in
fact — is entirely conditioned by the thoughts and feelings which you have entertained
in the past, by the habitual tone of your past thinking. And the condition of your life
tomorrow, and next week, and next year, will be entirely conditioned by the thoughts
and feelings which you choose to entertain from now onwards.

In other words, you choose your life, that is to say, you choose all the conditions of your
life, when you choose the thoughts upon which you allow your mind to dwell. Thought is
the real causative force in life, and there is no other. You cannot have one kind of mind
and another kind of environment. This means that you cannot change your environment
while leaving your mind unchanged, nor — and this is the supreme key to life and the
reason for this article — can you change your mind without your environment changing
too.

This then is the real key to life: If you change your mind your conditions must change
too. Your body must change, your daily work or other activities must change; your home
must change; the color-tone of your whole life must change, for whether you be habitually
happy and cheerful, or low-spirited and fearful, depends entirely on the quality of
the mental food upon which you diet yourself. Please be very clear about this. If you
change your mind your conditions must change too. We are transformed by the
renewing of our minds. So now you will see that your mental diet is really the most
important thing in your whole life.

This may be called the Great Cosmic Law, and its truth is seen to be perfectly obvious
when once it is clearly stated in this way. In fact, I do not know of any thoughtful person
who denies its essential truth. The practical difficulty in applying it, however, arises from
the fact that our thoughts are so close to us that it is difficult, without a little practice, to
stand back as it were and look at them objectively. Yet that is just what you must learn
to do.

You must train yourself to choose the subject of your thinking at any given time, and
also to choose the emotional tone, or what we call the mood that colors it. Yes, you can
choose your moods. Indeed, if you could not you would have no real control over your
life at all. Moods habitually entertained produce the characteristic disposition of the
person concerned, and it is his or her disposition that finally makes or mars a person’s
happiness.

You cannot be healthy; you cannot be happy; you cannot be prosperous; if you have a
bad disposition. If you are sulky, or surly, or cynical, or depressed, or superior, or
frightened half out of your wits, your life cannot possibly be worth living. Unless you are
determined to cultivate a good disposition, you may as well give up all hope of getting
anything worthwhile out of life, and it is kinder to tell you very plainly that this is the
case. If you are not determined to start in now and carefully select all day the kind of
thoughts that you are going to think, you may as well give up all hope of shaping your
life into the kind of thing that you want it to be, because this is the only way.
In short, if you want to make your life happy and worthwhile, which is what God wishes
you to make it, you must begin immediately’ to train yourself in the habit of thought
selection and thought control. This will be exceedingly difficult for the first few days, but
if you persevere you will find that it will become rapidly easier, and it is actually the most
interesting experiment that you could possibly make. In fact, this thought control is the
most thrillingly interesting hobby that anyone could take up. You will be amazed at the
interesting things that you will learn about yourself, and you will get results almost from
the beginning.

Now many people knowing this truth, make sporadic efforts from time to time to control
their thoughts, but the thought stream being so close, as I have pointed out, and the
impacts from outside so constant and varied, they do not make very much progress.
That is not the way to work. Your only chance is definitely to form a new habit of thought
which will carry you through when you are preoccupied or off your guard as well as
when you are consciously attending to the business. This new thought habit must be
definitely acquired, and the foundation of it can be laid within a few days.

For more info on HOW to do this mental diet, visit:

The 7 day mental diet

And today…a Poll!

Hi everyone. I have exciting news. On Wednesday I’m getting a level 2 ultrasound, and I should find out the sex of the baby. So today’s post is a poll. What do you think Nathan is going to have? A brother or a sister?

This should be fun!

Is Nathan having a brother or a sister?(survey software)

What it takes

My mom sent me this by email, and I thought I should share it here, as I think it’s great advice for everyone I know!

What it takes

Don’t let the difficulties get you down. Let them get you going.
Seize each opportunity to grow stronger and more purposeful. Discover again and again how good it feels to be confident and effective.
The challenges may indeed be great. With your dynamic resourcefulness, your creativity, your focus and persistence, you are greater than any challenge.
You can make a difference now. You can keep doing so for as long as necessary, until your goal is reached.
Feel the unshakable confidence that comes from successfully navigating through a difficult situation. Feel the satisfaction of knowing that you’ve lifted the world higher through your efforts.
You have what it takes to do what you must. This is your moment to truly shine.

And another one:

Just because you seem to be at a disadvantage is no reason to give up. Instead, resolve to push forward with consistent, focused effort.
Those who achieve are not necessarily the smartest, or the wealthiest, or the best connected. Those who achieve are those who are the most persistent.
Your level of commitment over the long term is a much bigger factor than any relative advantages or disadvantages that may exist when you first start. Choose where you would like to go, and keep making the effort until you get there.
Be willing to do what it takes, and you can achieve whatever you wish. Instead of worrying about where you are when you begin, put your energy into making steady progress.
If you can take one step and then another, you’ll get where you choose to go. So take the first step right now, and then begin working on the next one.
You owe it to yourself to live life at its best. Now is your opportunity to make that life happen.

We’re back in the game!

Today Nathan and I had a wonderful day. I had a terrible night with fevers and vomiting and thought we were in for a rough day – especially when Denise, the nanny, didn’t come to work. It turned out to be the opposite.

After all of the wonderful support and advice, I felt happier and calmer. Maybe Nathan perceived this? He woke up happy and in a great mood. He did REALLY well in both of his CME sessions and is back on track! Both Ramon and I felt that today was the first day since he got sick that Nathan was back on track and happily working hard. I don’t have a care in the world when I see my son happy and working hard in his therapy. It was almost like he knew I was having a rough time, and he wanted to let me know that I shouldn’t doubt him, that I should have faith in him. If he could speak he would probably say, “Mommy, don’t give up on me!”. Baby, I hear you loud and clear.

I leave you with videos of his sessions today:

Nathan, I am so proud of you!

Head Control

This is something that I worry about with Nathan. Ramon tells me not to worry – it will come, he says – but worry I do.

I was searching around the web and found these articles:

Music as a feedback mechanism for teaching head control to severely handicapped children: a pilot study.

Sensory feedback for head control in cerebral palsy.

Training of head control in the sitting and semi-prone positions.

I am really intrigued by these ideas! Basically if I can set some switches up on his wheelchair, so if he keeps his head properly aligned he gets a reward – for example, music – but if he lets it fall, he receives negative feedback – this might help him develop better head control!

I’ve been doing something similar lately. I sit him up completely straight in his wheelchair. He likes to lean forward so his head is not held but the wheelchair rests. But then as soon as he leans forward, he lets his head fall to the side – usually the left side. What I do is I will vibrate him back to midline. He will then drop his head again within 10 seconds, and I fix him again. So in a 10 min walk I will fix him at least 100 times. This is annoying to do but today I noticed that he kept his head aligned for about 5 – 10 seconds. So I think there is something to it!

Does anyone have any ideas about how to implement this? Does it even sound like a good idea? Am I completely mistaken that he can learn head control through biofeedback? Would really appreciate some feedback!!!

Encouraging Exploration

I found this article and thought it was very interesting:

Encouraging Exploration

What I have learned about brain development supports this theory, as in the early stages of development children learn through exploration and a good supportive walker gives them this possibility.

Just wanted to share, especially for moms of younger kids – in the article they encourage use of walkers from the age of 1!

Thank you

After I wrote the post yesterday I had a nice long chat with my mom, followed by a nice long chat with my good friend Laura, followed by a nice hot bath, followed by a deep peaceful sleep. I slept until about 1 pm in the afternoon – I was that exhausted. Denise took Nathan to Medek so I could rest and lo and behold, – everyone was right – things didn’t look so dark any more. The world looks different seen through rested eyes.

I wanted to make a couple of comments about yesterday’s post:

  • Nathan HAS improved. I was just too deep in the pits to see it. Just tonight, after dinner, he sat with me on the computer for a little while and I was only holding him by the waist, he held up his head and trunk. He’s definitely doing better with trunk control. Also, during dinner, he reached out and grabbed his zippy cup and was taking it to his mouth. He didn’t get it quite right – but he tried! He did the same with a banana later in the day. I also noticed he is eating MUCH better. I gave him rice and lentils for dinner and didn’t puree it, just to see how he would handle it, and he ate it perfectly, without choking, opening his mouth wide for me and controlling his oral movements wonderfully. Some time ago he wouldn’t bear any weight on his legs – I remember taking him to the Sesame Street Live concert and trying to get him to stand up so he could see over the heads of the people in front of us – and he just wouldn’t hold himself upright for even a second. Today he can stand with balance and sometimes trunk support for a VERY long time. When he is excited, he will pull himself to stand and stay upright for minutes! The improvements ARE definitely there, but, like Mary said in her comment, they’re not as advanced as I want them to be, which is my problem, not his, not Medek’s. I know I know, patience, I promise, I will one day have it! But in general, he HAS progressed and he IS stronger and his brain and body ARE changing and I am grateful for all of it.
  • I replied in Spanish to Kenia’s comment, I thought I’d write it in English too. I haven’t for a minute doubted Medek. I know with all of my body, mind, and soul that Medek is THE BEST therapy available for Nathan. I think Medek, combined with ABR for structural improvements, is the “holy grail” in the rehabilitation world. What I sometimes doubt is Nathan’s capacity for change. Since he has 3 different, very severe types of brain damage (holoprosencephaly, the damage from a compressed brain from untreated hydrocephalus, and the damage from an untreated bacterial meningitis), I sometimes wonder if I’m asking too much of him. Maybe his brain has suffered so many insults that it just doesn’t the ability to change itself. I have done everything based on the premise of brain plasticity, knowing that the brain is plastic and can rewire itself – but when I’m depleted and in a dark place I wonder if maybe Nathan’s brain is just too damaged. Then the wonderful Cybell mentioned that this is total BS, for a child with as much damage as Nathan he should be in much worse shape, his brain has adjusted wonderfully to all of the insults and is doing it’s best to improve. This is a child who is missing substantial portions of the brain, who doesn’t have an occipital cortex but can see, who has no corpus callosum, who has no septum pellucidum but can taste and smell, whose basal ganglia is fused but he has voluntary movements in his arms and legs. So by sharing my doubt to the world, kind friends pointed out the obvious and I, once again, feel renewed and reinvigorated. I believe in Medek, I believe in ABR, and I believe in Nathan. Now I just have to get myself well so I don’t forget all of these wonderful things.

I am so grateful for all of you wonderful people who are supporting us. Sarah, thank you for the advice, it really helped – it was the first step towards getting myself back to Center. January, I haven’t forgotten your words, I just needed to vent a little, come back to center and then remember that therapy takes time! Mary, I am grateful for your clear vision, when I read your post, I had to stop and think, and it made me step away from my negativity and see things more clearly. Mom, thank you for the long chat and for helping me calm down! I really appreciate your support! Laura – thanks for letting me vent! I think I just needed to get it all out of my system. You are right about giving Nathan time and about letting him take a little break. I hope to see you in NY soon! Give my Maxx a kiss for me! Karym, gracias por tu amistad y apoyo, te agradezco mucho tus palabras lindas! Cybell, gracias por cuidarnos tanto y por la conversacion de hoy, cuando colgamos ya me senti super tranquila, me abristes mucho los ojos y me siento tan agradecida de tenerte como amiga!!! Kenia, te agradezco mucho tu apoyo y observaciones, como siempre muy sabias! Sonia, thanks for being there! Summer, Kristina, Stacey – your words and support are greatly appreciated! I am glad I am walking this journey with such wonderful individuals!!! THANK YOU EVERYONE for your support.

PS. Trevor’s mom had a similar idea today, she said it so very well.

Mission Impossible?

When we first met Ramon he referred to Nathan as Mr. Mission Impossible…and then he said, “Not for long”.

I have to admit today I am doubting those words. I feel like I am walking through a desert with no end in sight. I feel like it’s windy and dusty and there’s no sign of water and I am walking with all my might but getting nowhere.

I look at Nathan today and I see the same Nathan I saw two years ago. I see the same floppy head, raggedy andy trunk, the same rejection towards therapy. Still his head flops all over when he’s in his wheelchair and we cannot go 1 minute without having to fix him.

Here’s a picture of him at the beginning of the year in the Hart Walker. I see him today and I just don’t see any improvements.

I am sorry. I have tried so hard to stay positive. I have laid in bed all night thinking of all of the things he has going for him, I have sat and watched every single video where he did something remotely well. But then I look at the child in front of me who basically has the same skills that he had as a 6 month old and I wonder – am I undertaking an impossible journey? When do you call it quits? When do you say, it is what it is, and take all that money, time, energy and put it on something that actually HAS an ROI? Like, spending a month on a beach sipping Margaritas (virgin ones of course until the baby comes)?

I am sorry. I know you are thinking I must have multiple personality disorder. Just a week ago I was writing about acceptance and today I write about the opposite. Two days ago I said I was a mother warrior and would never quit, today I am writing that I am nearing the end of strength. Maybe it’s just that 1 month of being sick takes it out of you. I went from that awful gastroenteritis that really wrought havoc in me, then I got a UTI shortly after, I got 2nd degree burns on my feet, now a terrible cold. If I were home I’d know just what to do but here, I’m not in my familiar setting, I don’t have the tools that I would use if I were home. And today to top it off I got some kind of allergy and on top of this awful cold I itch all over and I can’t take benadryl or anything that I know of to stop the itching. How much more can one pregnant mother take?

A few people have written that they see a difference in Nathan. But the truth is, I want to believe you’re right, but I just don’t see it.

I was considering staying here at least until December, possibly until March. But now, today, I have to confess – I am all out of steam. I’ve nothing left to keep me pushing. If I saw Nathan progressing, if I saw him WANTING to progress, I would find energy somehow, somewhere. But for the last 3 weeks, since he’s been sick and recovering, he’s just not into it anymore. He seemed interested in the first 3 weeks and if he continued with that interest, I would’ve done anything, ANYTHING, to extend this opportunity for him. But I don’t see interest, I don’t see progress, and I’m oh so tired.

It’s time to pack up and say – I tried. I really really tried. Now it’s time to go home, lick my wounds, and recover some steam, try again later. But for now, today, I’m collapsed on the desert sand and spent.

I’m sorry if I’ve depressed you. I wanted to be a source of positive energy to others. But more than that, I want to be honest in our journey. And honesty requires sharing the deep dirty droughts too.

PS. I guess it’s in the air, Caliegh’s mom feels similar: October Rain. The sad thing is, I really can’t say Nathan is progressing in any areas, and really hasn’t, so I’m even more depressed now. And now I’m going to try to stop itching, coughing, and blowing my nose and get some sleep. Good night.

A beautiful prayer

I read this prayer today and it was beautiful, she verbalized what I’ve been trying to say every sleepless night for the past few days:

Mackenzie’s Mother’s Prayer

(Please scroll to the bottom of the post).

It’s been a tough day today, a prayer would be greatly appreciated. Thank you.

Not so Wordless Wednesday

I MISS MY DOGGIES!!!!!!!!!!!!!!!!

PS. Yes, they are great danes, and yes, that is a dog in Lucas’ mouth, and yes they are as big as they look – 150 pounds each 🙂 And the beautiful girl with them is Aixa, who was house sitting while Owen came to visit – THANKS AIXA, we love you!

Q&A Wednesday

Donna had a great idea:

Being that you are having trouble getting inspired, I have a suggestion. How about choosing a day where you answer your reader’s questions. This way everyone will have the opportunity to get to know Nathan better.

Ok, I’ll start…. How much does Nathan weigh and how tall is he? He looks sooo small in some of the videos and pictures. But of course the camera can play tricks on the eye.

Thanks for the wonderful idea Donna!

So for the first answer: Nathan is 35 inches tall and 26 pounds. He’s been between 25 and 26 pounds for a very long time now. I hear people worrying about weight gain for their kids all the time, but for some reason I’m not worried at all, he is getting longer, he is very healthy, and he’s easier to carry!

For you Tita

Nathan’s grandma Tita requested more pics and videos of Medek…so this one’s for you Tita!

Dear readers – if you request, I shall deliver!

Inspiration – Supreme Diapers!

Okay I did have a moment of inspiration:

Costco Kirkland Supreme Diapers!

Why are these adapted? Well, I’ve noticed this phenomena here in Chile. Every couple of hours our friends run to the bathroom to change their kid’s diapers. They’ll ask us – don’t you need to change Nathan? Our answer is always – No, he’s good. Then the diapers we brought with us from the US ran out and we understood the phenomena – all of the diapers here leak after a couple of hours! And I remembered that when Nathan was younger he had a TON of accidents.

Then, Nathan’s uncle Brian recommended the Costco diapers. We were hesitant to buy diapers in bulk but hey, we figured we’d try. We were amazed to find that they are implacable – they last hours and hours, stay dry, and nothing leaks! Needless to say, Owen brought a whole bunch of them with him to us here in Chile.

So my contribution to Adapted Tuesday is – buy these diapers! You will have a lot less worry and hassle when it comes to diaper changes!

Lacking inspiration

I’ve been sitting at my computer for a really long time trying to figure out what to write about regarding “Adapted Tuesday” and honestly, nothing comes to mind. My “daily column” idea may not work after all, I think I am more of a spontaneous sporadic type of gal. Originally my idea was to write about equipment and other ways of making “life” accessible to kids like Nathan but unfortunately nothing’s flowing (except my boogers from this yucky cold).

Since I’m lacking inspiration, I will use this opportunity to highlight some posts which I’ve really enjoyed recently!

  • Don’t spit out Jesus Christ!
  • Gluten Casein Free Diet Explanation – Stacey reposted my explanation on the diet but I LOVED that she shared the success story of her twin boys – even though her kids have autism, they share the same basic problem – a compromised central nervous system – it just manifests differently!
  • Telling Time – Timmy is just SO cool..the things that boy figures out!
  • Excuse me
  • Sitting and Standing – I love how they are able/willing to adapt equipment and go with it!
  • Suzy rocking in Medek!
  • Comments!!!

    I am so sorry! For some reason the blog never posted many comments so I never saw them or replied. Typically when a comment is posted I get an email and then I go and replied but for some strange reason I was not alerted on many comments. I love and appreciate your comments and I am sorry that they never got posted!

    To the commenters who never saw their comments on the blog – I will reply back by email to everyone as some of the comments are a few weeks old and scattered throughout many blog posts.

    Also, thank you so much to everyone who comments on this blog – we love hearing from you! I read the comments to Nathan and it is one of those really pleasurable parts of our day as we connect with all the wonderful people we’ve met in our journey. In the past I responded to comments by email – and I will do so with all the ones that didn’t get published – but from now on I will reply to the comments on the blog itself so if you post a comment, look for a response on the same page!

    Thank you for joining us in our journey, we love you guys!

    Sleepless in Santiago

    Another night, another sleepless night. It seems the pattern of my days in Santiago revolves around sleepless nights and oblivious mornings. Currently it feels like Santiago has it in for me – infections, cold, allergies, sleeplessness. But I am a mother warrior. I refuse to give up. I will fight for Nathan, I will fight Santiago’s evil tentacles to give Nathan a chance for mobility. With the help of our lovely new friends we will make it.

    Tonight Owen was putting Nathan to bed, ritual which includes pijamas, tooth brushing, lots of laughter, and drinking water, when I hear Owen scream in panic “Oh my God Marcela com here”. My heart stopped and in that instant I thought, he stopped breathing, he’s having a seizure, he vomited everywhere … In 1/2 second I was in the room to find Owen holding a broken water glass. Apparently my son Jaws chomped on the glass and broke off a piece of it. Fortunately it fell right off and didn’t splinter and all was well. Ah, a life in Nathan Dorje’s life – never boring.

    So in my sleeplessness I’ve been thinking about how to make this blog more fun, more appearling, more informative. I was inspired by Amber over at PrayforBrandon.org. She recently reorganized her blog and created daily columns, so she has a predetermined theme for the day. I think that’s a fantastic idea. Here’s what I came up with:

    Alt Health Monday
    Adaptive Tuesday
    WayBack & Wordless Wednesday
    Eye on Therapy Thursday
    Chit Chat Friday

    What do you guys think? Any other ideas/suggestions? Of course if there are things happening that I want to talk about specific to the moment, I will tack that on or write a separate post. But maybe these are just the ramblings of an insomniac?

    3 months and more

    Today, Max is 3 months pre-old (since he’s not yet born). I am ecstatic that we’ve made it this far! Max and I have had some exciting times together – from being told that he wasn’t alive, to making it through several infections and a ton of morning sickness! I can tell we’re gonna have some fun times when he’s finally born. And no, I don’t know for sure if Max is a boy, but – for the moment’s sake – we’ll call him Max. I have an appointment next week for a Level 2 ultrasound – and I’m told they’ll be able to tell us then if we’re having a boy or a girl! So watch for the announcement a week from today. During the last checkup about a week ago, the doctor said Max looks fantastic so far – everything measures just right. I’m just grateful we’ve made it this far!

    On other news…we went to see a broncho-pulmonary specialist today who told us Nathan initially got a cold which led to ashtma and bronchitis and which has been irritated by allergies. He gave us allergy meds since we already have his inhaler and he thinks that should make him well in a few days!

    He finally went back to Medek this morning. He did well! It’s his first time back in a week and I was nervous, but Ramon said he did fantastic. We had to stay outside because he was whiney when we were there, but worked harder when we weren’t in the room – thus no pics or videos. But in general he was quite happy with his response today. For the first time I felt Nathan’s strength come back and for most of the afternoon he was holding his head and trunk up well! At the mall afterwards he saw some kids playing and he stood up completely straight, supporting himself fully, and it was like he was dying to run after them. I told him he would one day if he kept working hard in this therapy, and he smiled at me and kept on screeching at them and wanting to play. I am hopeful!

    We had a funny incident last night. I was a bit homesick so we went to the mall across the street to the taco bell. We went late and I was starving and finally I got my crunchwrap supreme. Just as I was eating a few bites, Owen accidentally bumped Nathan, who got hysterical, and barfed all over me and my crunchwrap! We ran back home so I went to bed with an empty belly and still dying for a crunchwrap. You can imagine my face running through the mall with a half naked Nathan and barf all over me. It was ne of those moments.

    So here we are. Into the 2nd trimester. Back in therapy. But Owen is leaving tomorrow so it’s our dark cloud. Nathan is going to be devastated – he’s been attached at the hip to his dad for the last 2 weeks. We don’t know when we’ll be home (it all depends on how Nathan does in therapy), but we have some good times to look forward to – and hopefully a lot of progress for the monkey.

    I picked up Nathan’s cold and am slightly miserable but promise to not disappear completely in the next few days 🙂

    Way Back

    I was reading some old posts and decided to start a new idea. Every so often I will post a “Way Back” post – something I wrote a while ago that seems very relevant today. Today’s post is:

    Self care

    I hope you enjoy reading this one as much as I did!

    Best Special Needs Blog

    Max and his mom Ellen are up for an award for the Best Special Needs Blog. I know some of my readers enjoy their blog so I thought I’d mention that the voting is still open so you can show your support:

    http://pregnant.thebump.com/extras/mommy-blog-awards/articles/special-needs-blog-finalists.aspx

    It only takes a minute and I’m sure it would mean a lot to Elle and Max.

    Sick

    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 came back with a vengeance. This morning he woke up better, so much so that we went out for a little bit as he seemed in good health and spirits, and then he burst into a fever, vomit and tears in the early evening so we’re back to square one. Bahhh humph.

    About Water

    In Feb 2008, I came across some information about drinking water that was quite an eye opener for me. To summarize, I learned that bottled water was quite harmful as it’s very acidic and devoid of necessary minerals. I also learned that disease thrives in an acidic environment, and that it’s very important to maintain a neutral or slightly alkaline pH. Finally, I learned that tap water is treated with chlorine which is a known carcinogenic (causes cancer). These discoveries led me to learn about different options for drinking water and I purchased a water ionizer. Once again, since Nathan has a compromised central nervous system, I think it’s extra important to protect him from the inside out – since we are all about 70% water (the brain even more than that!).

    Romi Sink, a good friend who subsequently started a business selling water ionizers and other water treatment products, was kind enough to allow me to publish an article talking about different kinds of water systems, the pros and cons, and summarizing why it is ESSENTIAL to change your water. Thank you Romi!

    Why Filter Clean Water?

    This post primarily addresses the pros and cons of filtering municipal tap water that has been treated to adhere to government standards of water quality. Most water treatment centers around neutralizing bacteria and pathogens that are either found in or can develop in municipal water supplies.

    Every municipal water source has water quality standards that must be met to ensure “safe” drinking water. These standards address what is in the water that is being delivered to homes and at what levels. Chlorine and Fluoride are the two most common additives used eliminate bacteria and pathogens to prevent disease.

    Chlorine itself is a known carcinogen, but that’s not the end of it. When chlorine combines with organic materials found in source water it forms byproducts, most commonly Trihalomethanes or THM. THM’s include chloroform, promoform and dichlorobromethane – all known carcinogens. The EPA has recognized the health risks of these disinfectant byproducts and has set “acceptable standards” for quanities in drinking water. If you are drinking city/municipal water, you are also consuming THM’s.

    THM’s have been associated with early-term miscarriages and slow fetal development. Chloroform, one of the THM chemicals, has also been linked to cancer and tumors of the liver and kidneys. Studies have found a significant link between drinking chlorinated water and increased incidents of both bladder and colorectal cancers.

    Before I go any further, yes – I am making an argument for filtering your drinking water. And yes – I sell water filtration products. This article is not designed to be a scare tactic to boost sales, rather an informative piece to inform consumers about the hazards of disinfectant by-products in municipal water sources and solutions to reducing your risk.

    At this point, chlorine seems to be a necessary evil to keep our municipal water supplies safe from disease forming pathogens and bacteria. There are options for removing chlorine and its byproducts. Most are more affordable than switching to bottled water and more environmentally friendly than adding to the number of plastic bottles in our nation’s landfills.

    “Ultimate Pre-Filtration” – Reverse osmosis purification systems remove EVERYTHING from source water. Chemicals, pesticides, trace pharmaceuticals, chlorine, bactera – everything. The downside to reverse osmosis is that it leaves water “empty” which causes it to draw key minerals from our bodies. It also leaves water “acidic” which is known to weaken the immune system and promote early aging.

    Reverse Osmosis with a re-mineralizing filter will effectively remove everything from your water, but will add back in trace minerals which are healthy for the body and can leave the water less acidic.

    The RO with Pre-Filtration system that I sell costs $380 and your annual maintenance cost will be around $200. You can find detailed information on the “Ultimate Pre-Filtration System” here.
    http://www.waterionizerauthority.com/ultimate-pre-filtration-package.html

    Filtration for City Water w/Fluoride – This system has been called the next best thing to RO. It will effectively remove chlorine, chloramines, THM’s, Fluoride, heavy metals and a number of other contaminants found in city water. This system sells for $200 and your annuall maintenance cost will be around $150. You can find more information on this pre-filtration system here: http://www.waterionizerauthority.com/h3-pre-filtration-for-city-water-with-fluoride.html

    “At the Very Least” – At the very least you should consider a filter that removes chlorine. The chlorine filter I recommend and sell effectively removes chlorine, some bacteria, bad odor and taste and other basic contaminants. You can find the Chlorine pre-filter here: http://www.waterionizerauthority.com/gac-pre-filter-canister.html

    “The Very Best” – Water Ionizers effectively remove chlorine, most bacteria, odor, bad taste and up to 50% of fluoride. In addition to providing “clean” water, these units give you the option to adjust the alkalinity of the water.

    Through the process of electrolysis, the molecular structure of the water is changed, reducing the water cluster size, separating alkaline from acid and creating antioxidant properties.

    Any sort of supplement taken with alkaline ionized water will be absorbed more quickly by the body. For this reason, taking prescription medication with alkaline ionized water is not advised. Every water ionizer has a “neutral” setting where water is filtered but no ionization takes place. This is the setting you would use to take prescription medications or to produce water to drink with meals. The alkalinity of the water neutralizes the stomach acids necessary to properly break down foods so that the body can absorb the nutrients. You should avoid drinking alkaline ionized water at or within 30 minutes of meals.

    Alkaline ionized water drinkers have seen improvements in diabetes, blood pressure and digestive problems. The anti-oxidant properties of the water along with the alkalinity reduce acidity in the system and help flush toxins from the body. Disease cannot live in an alkaline environment. Drinking alkaline ionized water can boost your immune system.

    For more information on the benefits of drinking alkaline ionized water please visit http://www.waterionizerauthority.com/articles/health-benefits.html

    Water Ionizers range in price from $650 to $4,000. The annual maintenance costs of water ionizer (filter replacement) are between $55 – $200 depending on the water ionizer you choose and your actual usage. For information on the water ionizers available please visit http://www.waterionizerauthority.com/product-comparison.html

    A quick word about what really happens when you take a shower. Chlorine and THM’s are absorbed through digestion (drinking) but they are also absorbed by inhalation and through the skin. Blood sample analyses of 25 women concluded that THM concentrations were increased four-fold after showering with water that had been treated with Chlorine.

    You can find more detailed information about chlorine, trihalomethanes and water here at these sites: http://www.theolivebranch.com/water/trihalo.htm
    http://www.pure-earth.com/chlorine.html

    I use and recommend AquaSana shower filters. They remove chlorine and other contaminants. Aside from reducing your exposure to chlorine while bathing, other happy side effects that I have experienced have been shinier, more manageable hair, softer skin and a significant improvement in a skin condition I have had most of my life – tiny bumps on my upper arms.

    After discovering what a difference a filtered shower could make I gave these filters away to all of my family members for Christmas. My father visited me shortly after I installed mine and asked me to order one for him to have when he got back home.

    I recommend using a hand-held wand with at least a four-foot hose with your shower filter. When I take a bath I prop the shower wand up on the side of the tub and fill the tub with filtered water. My dog is less “itchy” since I started using the Aquasana Shower to bathe her. The handheld wand option is also helpful when bathing small children.

    For more information on the AquaSana Shower filter please visit http://www.waterionizerauthority.com/aquasana-shower.html

    Whether you have immediate health issues that you are trying to address or you are looking for something to add to your overall health and wellness plan, START WITH YOUR WATER. At the very least, limiting your exposure to known carcinogens will reduce your risk of cancer. Many people who begin filtering their water or using a water ionizer find that they actually start drinking more water – which is recommended by almost any doctor.

    Sadly we may never be able to stop the pollution of our planet’s water supplies. With big business, big money and big government all wheeling and dealing, the prognosis for our plantet’s source water just isn’t good. And for the time being, the most reliable way to remove the threat of pathogens and bacteria from our water supplies seems to be continued use of chlorine as a disinfectant.

    Take a few moments to do some research yourself – you’ll find a wealth of information on the hazards of disinfectant byproducts. Then weigh your options. Bottled water versus filtering at home. In most cases, after the initial investment you’ll be paying far less to maintain point-of-use filter products in your home than buying bottled water. And you’ll be doing your part to slow the build-up of plastics in our landfills.

    For more information on the filtration products mentioned here you can visit my website, WaterIonizerAuthority.com.

    (c) Romi Sink
    Water Ionizer Authority
    (866) 649-4380

    A wonderful weekend

    Here are pictures of our weekend. I think the pics say it all 🙂

    On Saturday we went to Vina del Mar with Cybell, Karym, the 2 Patricio’s, and the beautiful Catita and Vicente.And his favorite part:

    On Sunday we went to the MIM museum with Sonia, Eduardo and Rocio:

    Born with half a brain

    Check out this amazing video!

    Embedded video from CNN Video

    Maybe Nathan will one day appear in a news story like this 🙂

    500

    According to WordPress, this is my 500th post. I figured it was a good time to celebrate!

    I wanted to thank everyone who’s shared this journey with us – new and old friends. I wanted to thank everyone for their advice and support during this roller coaster journey.

    Most importantly, I wanted to celebrate the beginning of a new phase for us. Perhaps you’ve noticed a change in tone in this blog. A few months ago things got a bit dark as I went through a rough patch and was in the middle of changing paradigms. But lately I feel as if we’ve entered a new phase and I wanted to celebrate this new phase with this 500th post.

    The phase is called acceptance. After 3 years I feel I have finally settled into deep acceptance of our journey. I no longer see a disabled child, I see a beautiful, kind, loving soul. Instead of worrying about his future 80% of the time, I only worry about his future 10% of the time.

    I finally see the most important thing, what many people have been trying to tell me since the day he was born: Nathan is a HAPPY soul.

    Everyone wants one thing for their children: For them to be happy. Of course as parents we want them to be successful, but most of all, we want them to be happy. We want them to feel good from the inside out. We want them to feel confident, loved, to find joy in whatever they choose to do in their lives.

    And a couple of months ago it finally dawned on me, deep in my heart – Nathan is a HAPPY person. He isn’t momentarily happy, he is happy 90% of the time. He displays a deep happiness that shines in his eyes, in his very being. Regardless of his limitations, regardless of the fact that he cannot do anything for himself – he is happy. And I finally realized – Nathan has NOW what I want more than anything in the world for him.

    Part of me held on to the thought – he may be happy now, but will he be happy in 2 years when other kids are doing XYZ and he can’t? Will he be happy when he’s 20 and unable to tell the woman he likes how he feels?

    And then a couple of months ago I decided – ENOUGH. Why worry about a future that may never happen? I’d rather look at the child in front of me now and enjoy his happiness and deal with the future when it comes. Why not be positive and think that regardless of his limitations, he will be happy with whoever he is and whatever he can do?

    So in this 500th post, in 500 words – I am grateful. I fully accept my son. I feel very fortunate to have this incredible happy soul in my care, in my life. I must’ve done something right to have received the most incredible gift in the world, my gift of God, my Nathan.

    The Lemonade Award

    Kristina over at HowLifeHappens made my day today by nominating PrayForNathan for a lemonade award!!! It wasn’t just the nomination, it was also the person that it came from! I respect Kristina tremendously and have been avidly reading about her experiences with her daughter Emma how has CP for quite some time now. Kristina is a strong, bright woman and we are honored to be nominated for this award from her.

    Her daughter, Emma is not just incredibly beautiful, she has a very strong and determined personality. I have watched her evolve over the months and watched her determination to learn and do new things. Just recently she started belly crawling, is trying very hard to talk, and seems to be learning new things every day! I am in awe with her strength and determination and just love having a glimpse into their journey. Thank you Kristina!

    What, you ask, is a Lemonade Award? Good question.

    A Lemonade Award is given to bloggers who show a positive attitude, gratitude, and a willingness to share their ideas, support and online friendship. In other words, people who make lemonade when they get lemons!

    The rules of the award:
    – Put the Lemonade logo on your blog or within your post.
    – Nominate at least 10 blogs with great attitude or gratitude.
    – Link the nominees within your post.
    – Let the nominees know they received this award by commenting on their blog.
    – Share the love and link to the person from whom you received this award.

    Now, for my nominations……

    1. MamaTerapeuta
    2. Pray for Brandon
    3. Suzy Beth Booze
    4. The Deal with Disability
    5. Adapted World
    6. Carly and Jay’s Blog
    7. BusyLizzy
    8. Makenzie’s Miracle
    9. To the Max
    10. Fighting Joey

    Ok, now go ahead and click on the above blog links to find amazing stories and inspiration.

    Feedback

    I think it’s that time for me to ask: what kinds of topics would you like me to write about? Lately I’ve been more chatty and haven’t done too many informational posts. I would be very grateful if you gave me some feedback about the sorts of things you enjoy reading about in this blog! Thanks so very much!

    Miracle Cure

    I wish I could say I have a miracle cure for CP…unfortunately the only cure I seem to have found is for Nathan’s bronchitis..and it starts with a D. DADDY. He was a mess yesterday, but started recovering as soon as he saw daddy. Today he only wanted to hang out with daddy. He’d be a mess with me and Denise, and perfect with daddy.

    In the afternoon we followed a protocol of homeopathic remedies that Sonia shared with us (I’ll ask for her permission to reprint it) and after we finished with that, and he got to spend time with daddy, he was all cured. He went to preschool for a couple of hours and then we picked him up and went to dinner (Benihanna’s – YUM!!!) and the mall and he was SOOO excited. By the end of the night, he wasn’t coughing any more, his color was back, and he was fully recovered! He’s now happily sleeping.

    Tomorrow we go back to Medek and regular life!!!! Hooray!!!

    Itis

    After my gastroenteritis it seems it was Nathan’s turn for an ‘itis – Bronchitis.

    It seems to be mild so far – he’s coughing a lot and generally miserable – and we’re doing our best to manage the symptoms at home. Sonia told us of a protocol using homeopathic medicine that we’re hoping will help him. Worst case scenario we’ll have to take him to the hospital.

    The good news is that Owen is here! He made it safely last night. Nathan almost passed out with joy when he saw him. He is SOOO happy to have his daddy around.

    Please keep us in your prayers as we continue to take a beating from Chile!

    Cuteness

    Here are some pictures of the last few days:

    In other news:

    Nathan seems to be coming down with the same thing I had. Now that we know what it was, we’re jumping on it and I’m getting him on antibiotics tomorrow. He’s not feverish yet so hopefully we will stop this before it gets serious.

    Also, Owen will be on his way to see us tonight, and arrive tomorrow night! Nathan and I are excited to see him!

    Finally, today baby Max is 10 weeks old. So far this baby’s proven to be a fighter, just like his brother!

    Knock Knock!

    Who’s there???

    Drop us a little comment so we know who’s stopping by to visit!

    Nathan wants to know who’s checking in on him. Say hi!

    Thanks!!!

    About the GFCF diet

    I had written this as a reply to Katy’s post a couple of days ago but just now had a chance to post it. I couldn’t post it on her blog because it was too long, so I figured I’d post it here. Katy is thinking about starting a special diet for her son Charlie and wanted to get some feedback from different people, so this was my reply:

    This is a very extensive topic and requires a lot of education so I thought maybe I’d share a little bit about how we came to understand the relationship between health, development, and diet.

    About a year ago I picked up Jenny McCartney’s book about her autistic son. She talks about curing autism with diet and she made clear correlations between the gut and the brain. I’ll try to simplify, but in a nutshell, the proteins in milk and wheat are quite large. When the milk/wheat is digested, it breaks down into smaller components, and the peptides that you get for them are very large. These large peptides have a tendency to perforate tiny holes in the intestines, causing something called “leaky gut”. Through these tiny holes, toxins, peptides, and other elements escape into the bloodstream. The immune system sees them as “offenders” as they are ‘out of context’ – they’re supposed to be in the digestive tract, not floating around in the blood stream. So the immunoglobulins (IgG) attack those substances, causing an allergic reaction. This allergic reaction releases histamine, which is a neurotransmitter that prevents the creation of other neurotransmitters including dopamine and serotonin, which are essential for proper brain development.

    Another thing that happens is some of those peptides travel to the brain and in the brain they function like an opiate (like the drug opium) causing a hazy, foggy feeling that prevents proper brain processing and interaction (like being drugged).

    Also, if there is constant inflammation, the immune system is always in overdrive, which in and of itself has serious consequences. Eventually they become immuno-suppresed, which leads to other problems.

    Also, substances like milk and wheat feed fungus like candida, which releases a nasty toxin into the bloodstream.

    I am trying to keep it simple so in a nutshell, wheat and milk are very difficult to process, even for healthy people, and can wreak havoc on children that already have compromised central nervous systems.

    There are many books / studies talking about the connection between the gut and the brain. Without a heatlhy gut the brain is functioning at a much lower rate. That was my next step. Even though Nathan has CP, not autism, I made the connection between “compromised nervous system” and gut and a light went off in my head.

    In the autism world they recommend the Gluten Free Casein Free Diet (free of milk and wheat). That seemed like my next logical step as they see miraculous recoveries in children with autism using this diet. Even though the symptoms in autism and CP are quite different, they are both CNS disorders so I figured that it was a good connection.

    We went cold turkey. One day Nathan was eating cheese, chocolate, milk, and whatever we wanted. The next day he couldn’t have any of it. He had a rough couple of days but we stuck to it and on his 4th day he was okay with the new diet.

    We cook everything from scratch. We don’t use anything with preservatives, or anything that may contain hidden traces of milk or wheat. Breakfast tends to be GFCF cereal (with rice milk) or GFCF pancakes (these are sold pre-mixed at health food stores). Lunch is usually vegetables, a grain like brown rice, quinoa, or millet, and a protein (fish, chicken or beef). We buy everything organic for him. Dinner is usually something similar to lunch. He gets 2 snacks which are usually fruit, or carrots, or millet with avocado, or rice cakes, or oatmeal. Nathan can’t chew well so everything is pureed.

    The first 3 months were tough because he was detoxing. He was sick a lot. But then we added some of the same supplements used in the autism world (B vitamins, multi-vitamins, etc) and his immune system recovered. Starting Feb 09, Nathan has only been sick twice for a couple of days, he has much more energy, he is more connected, he understands more, he is trying to do new things, he looks rosy and radiates health, he is stronger. Just a couple of weeks ago I was able to see the true power of the diet. We had to break the diet because we are in a foreign country and it took us a little while to figure things out. So for 2 days he was allowed milk and wheat. On the 3rd day Nathan was pale, spacey, very low energy, and irritable. I could see instantly the poor effect these foods had in him. We want back to the diet and after 4 days of detoxing he was back to being connected, healthy, and happy again.

    I cannot recommend cutting out milk and wheat enough, our kids have enough going on and don’t need more obstacles to their development.

    Here are a few old posts I’ve written on the subject:

    Nathan’s Menu

    Nutritional Testing – Biomedical Protocol

    Nathan’s Menu – some explanations

    I am home

    My little Chilean hospital adventure is now mostly over (I have to return tomorrow for IV treatments, I still have the IV line open). I got home about 30 min’s ago from the hospital from what it turned out to be my first hospitalization in my adult life (other than giving birth). It seems I picked up a bug in the water or food that caused severe infection in my intestines, spleen, and stomach. The actual diagnosis was Acute Infective Gastroenteritis. The good news is that this has almost no chance of affecting the baby, whose heartbeat was strong and growth still measured very good. The bad news is that it was a pretty traumatic experience for us both as the fevers would get quite high and I’d get awful chills, pain in my body, and vomiting and diarrhea. I was at the hospital for a total of 52 hours with virtually no sleep so you can imagine how shattered I am.

    I was completely moved and blown away by the outpouring of kindness and support that we encountered during this ordeal. Sonia visited and spent several hours at the hospital every day, Cybell spent the nights with Nathan (and her husband Patricio stepped in to drive her and to take care of their daughter), Denise the nanny took complete care of Nathan during the day, and I had so many people calling and checking on us that it was incredible. Ramon’s son Alexis went over to the hospital to check on me, and Ramon’s daughter Claudia called several times a day to see how we were doing. Ulla and her son Yussef came to visit at the hospital and Tia Pao and Tia Bernie from Nathan’s preschool and many of our new Chilean friends called many times to check on us. I felt so supported in a situation which would’ve otherwise been impossible. My deep gratitude to everyone who called, helped, emailed, visited and prayed for us. I am so very very grateful to all of you. I can’t tell you all how much I appreciate every little bit of support and help that you offered.

    Even though it was hard to feel so sick, I am grateful for what I went through as it allowed me to appreciate even more the incredibly wonderful people that we have around us.

    Now I am on bed rest for the weekend but thrilled to be home! When Nathan woke up from his nap and heard that I was home he was positively radiant. He was laughing and smiling and I could just see how thrilled he was that mommy was there for him again! All is well now and I am hoping to enjoy a couple of days of rest.

    Thanks again to everyone who supported us through this experience!