Archives for June 2010

TherExtras

I wanted to give a shoutout to a blog that I really enjoy following:

TherExtras.com

It is written by Dr. Boucher, who is a child development expert, along with many other titles which I now can’t seem to find on her blog. This is how she describes her blog:

supporting parents of children with diagnoses through information, experience and relationship

Her description is entirely accurate. She has sent me resources when she believed it could help me help Nathan. I have seen her do the same on blogs of other moms raising kids with CP. She also shares wonderful information on her blog, on a wide variety of topics.

Here are a couple of blog posts that I enjoyed reading and sparked ideas for me:

Adaptations to the Environment

Toys that Teach

Nature vs Nurture

These are just a few posts that I’ve enjoyed reading, just to give you the scope of the subjects that she touches upon.

I hope you enjoy reading Dr. Boucher’s blog as much as I do!

Wordless Tuesday

Santa Monica

Sometimes it’s easy to forget why we live in LA. Today we remembered.

We spent the day at the Santa Monica beach with one of my best friends who flew from New York to meet Belle. We had a GREAT time! Nathan is 95% healed – other than a wet cough he is doing very well. And Belle…she got to hear the roar of the waves and smell the salty air and feel the scratchy softness of the sand on her hands and feet.

We threw Nathan’s diet to the winds and gave him whatever he wanted to eat – and eat and eat and eat he did. He’s making up for lost time and eating everything in sight. I hope it’s only a matter of time until there’s some meat on that cute skinny sack of bones. He went on a few rides at the santa monica pier, played in the arcade with his daddy, and squeaked and squealed at the chaos around him.

On the ride home I looked back and saw Nathan with his hand resting on Allyson’s thigh. He had his mischievious glimmer in his eye….I could almost hear him smugly thinking, look at me I’ve got my hand on the pretty girl (Allyson is a hottie!!). What a boy he is!

As we were riding home Allyson was asking me about Nathan’s development and asked me how much he understood. I told her I feel he understands a lot but it’s hard to know because he has so many physical limitations that limit his ability to show us what he does or doesn’t understand. Stepping into her teacher mode, Allyson started playing with him and asked him to help her count the trucks that went by. Nathan looked right out the window. He understood exactly what we said and decided to follow a command!

All this time he had his hand on her thigh…so she asked him to touch his own knee. He immediately moved his hand and touched his thigh (he couldn’t quite reach his knee). Then she asked him to touch her thigh again. Boy did he smile when she asked him to do that! And he touched her thigh again. They went back and forth several times until I pulled out the camera and he decided it was time to stop.

We made it home and finished the day by jumping in the spa. Nathan couldn’t stay awake any longer so he went to sleep. But Belle thinks she’s 2 months going on 20 years old and decided to stay awake and go into the spa with us. She kicked and played in the water for a good 30 minutes before she finally gave in to sleep.

Life is so good.

Bits

It’s too late and I’m too tired to be cohesive so here is my late night rant:

* Nathan is much better. He is eating well. Our entire household is engaged in “Operation Fatten Nathan Up”. We make him pancakes almost every day. He’s been eating brownies. We give him food every couple of hours. He was getting WAY too thin. He’s been eating well and hasn’t puked in a few days. Thank God! He is still very congested and having respiratory problems but he’s definitely on the mend.

* Someone gave us a Baby Ktan for Belle and I’ve been using it – and LOVE it! It works better than the ergo as she is so little. The Ktan holds her better and is a nice place for her to nap while I do stuff. She’s developing so well – she is awake most of the time, she’s already doing baby push-ups, cooing a LOT, plays in her gym, crawls on her belly, has nearly perfect head control, smiles and laughs, and rolls from her tummy to her back. This is one delightful little girl! Oh and she’s outgrown all of her newborn clothes and is now wearing 3-6 month clothes!

* I’m getting really excited about our appointment with Anat Baniel coming up in 1 week!

* While in Montreal, Owen, Mary and Nathan went to the ABR center and received training on the new exercises developed by Leonid. Since Nathan was sick all week we didn’t do CME with him, so we used the extra time to do ABR. We’re on a roll! He’s now receiving 2 hours of ABR therapy / day. I can’t wait to see how this affects his structure!

* I had a rolfing massage – it was AMAZING! The theme for this month from my woman’s class was “Body Care”. So I decided to treat myself to a massage with Nathan’s rolfing therapist. The man is truly a gifted healer. He fixed a pain that I’d had in my sacrum since I got pregnant with Belle. It’s gone, completely gone. Absolutely incredible. I will write more about rolfing soon, but I will say – what an INCREDIBLE therapy!

Cord Blood Banking

This is an issue which I believe is relevant to everyone, not just families with special needs kids. Please let me know if you guys have any questions or want me to clarify anything.

As soon as I found out I was pregnant I instantly knew I wanted to save our daughter’s cord blood. Here are the reasons why:

* The possibility of using Belle’s cord blood to help Nathan
* For Belle to have her cord blood available for her in case of future issues

Other countries have made lots of progress in understanding stem cells and in developing therapies for use with stem cells. But the US was very far behind because of Bush’s ban on stem cell research. Since Obama’s election, stem cell research is speeding ahead. Even though right now there aren’t many applications for stem cells, I know it’s just a matter of time until many are developed. What scientists and doctors know about stem cells thus far is just too promising for this treatment modality not to be explored in greater depth.

I believe it’s only a matter of time until stem cell therapy is being actively used in many aspects of healing. For this reason, I thought it was essential to save Belle’s cord blood, as it might benefit both her and Nathan in the future.

Before Belle’s birth I did quite a lot of research and narrowed my choices down to 2: Viacord and Cord Blood Registry. My criteria for choosing these included the number of years in business, the number of successful transplants, whether they’re licensed and/or registered with the FDA, how the cord blood is stored and accessed, whether the cord blood is insured, and a few more factors. I decided to leave price out of it as I figured this wasn’t an area where saving a few bucks would be worth it. Plus they all have payment plans so when it came down to monthly payments the difference wasn’t too great.

I decided to call Duke University as they have the only trial with cord blood for Cerebral Palsy approved in the US thus far to ask about their opinion. I spoke with someone from their staff and they said they can’t give specific recommendations, but in general, either ViaCord or CBR would be fine and they’ve had success with stem cell transplants with cord blood stored at both banks.

Initially I chose CBR for the following reasons:

– They are now saving cord tissue as well as cord blood. The tissue has a higher concentration of mesenchymal stem cells, which are the ones used for regenerative medicine. There is an additional fee to store the cord tissue.

– They recently came up with a new collection kit that saves more stem cells.

– They were chosen to be the only bank to be associated with a new FDA approved stem cell study: http://www.cnsfoundation.org/site/News2?news_iv_ctrl=-1&page=NewsArticle&id=9113&autologin=true

– They have a Parent program where other families get credit if you use their coupon code, plus they offer a nice discount of $250, reducing the total first year cost to $1900.

When I was about to sign the paper work with them, I got in touch with another parent of a child with Cerebral Palsy who told me about LifeBankUSA.

LifeBankUSA is the only cord blood storage facility that has the technology to also store blood from the placenta. I spoke with a couple of their representatives and did extensive research online about the viability and amount of stem cells available in the placenta. What I discovered was that the placenta DOES contain many viable stem cells, and that it contains a greater concentration of CD34+ stem cells, which are the key cells needed for transplants. LifeBankUSA is the only company with the technology to extract and save the cells from the placenta.

There is a greater cost for this service but I figured it would be worth it, as my plan is to hopefully use 1/2 of Belle’s cord blood for Nathan, and save the other 1/2 for her. So the more we can get, the better.

In the end I chose LifeBank for the following reasons:

– Greater concentration of stem cells in the Placenta
– They have been in business for 12 years
– They are owned by a large pharmaceutical corporation which gives them financial backing (which ensures they won’t shut down and thus the cord blood will continue to be well preserved).
– They save the blood in bags, which means I can split the blood to get some for Nathan and save some for Belle (not all facilities store them separately, some store them in a way where if you take it out, you have to take it all out).
– A large number of independent successful transplants
– They spend a lot of money and energy on research. The mom that I talked to has been talking to some of their scientists and I know for a fact they are trying to find ways to use cord blood for siblings.
– They also have a parent referral program, where every friend that you refer that saves their child’s cord blood with LifeBankUSA will give you a free year of storage.

I also really liked the sales rep that I spoke with, and felt that she was the least pushy of all the reps I spoke with from various companies. When I feel that I am part of a sales process it makes me a bit weary, so it was refreshing to speak to a company where the reps aren’t pushy at all.

Our experience with LifeBankUSA was great. They picked up the blood in a timely manner and everything was flawless. Our report stated that we collected 791,000,000 stem cells. As the average cord blood collection contains 725,000,000 cells, we obtained an additional 66,000,000 from the placenta. They also explained that of the 66 million cells, there is a much greater concentration of the CD34+ stem cells in the placenta which is the key stem in a transplant. They are generating a report for me of exactly how many of each cell type we collected, and I will write a post about that when I receive it. They are also doing a study to match Nathan and Belle’s blood to determine their level of compatibility which will give us further information about the viability of a future transplant.

The obvious question is then – how close are we to being able to use sibling cord blood to help children with CP? The unfortunate answer is that we are still a few years ahead. The mom who told me about LifeBank recently attended a stem cell conference and talked with all of the “key” players in the stem cell industry. She spoke with the Dr. from Duke who has been conducting a trial, she spokes with a doctor from Mexico who just finished a stem cell trial, and many other leaders in the industry. All of them mentioned that they are researching and going through the “due process” to be able to use sibling cord blood to help kids with CP, but they don’t have anything ready yet and don’t expect to for a few more years.

Since facilities in other countries already have the technology, I know it’s only a matter of time until these treatments are available in the USA.

I believe stem cells have such great potential for health enhancement. And the wonderful news is that it really IS just a matter of time until they become a standard part of our Western medicine. At the moment the cord blood banks advertise them for issues such as cancer and other related diseases, but what I have learned about stem cells is that they can help in so many ways, at the very least, they can be used for health improvement and regeneration!

Right now, however, the only alternative for kids with CP who didn’t save their cord blood is to go to another country to use cord blood from other sources. There is a facility in Germany that uses the child’s own stem cells extracted from the bone marrow. The only issue is that these are hematopoietic stem cells – stem cells that create blood – so it is still not know whether these blood producing stem cells can help in the creation of neuronal cells. The X-cell center in Germany claims they have a high success rate, however this needs to be verified by a controlled trial here in the USA (currently there is one in Mexico that is in the process of computing their results).

To summarize: If you are considering whether you should bank your child’s cord blood – spend the time doing the research so you can understand what stem cells are and their potential. If you already know you want to save your child’s cord blood and don’t know what bank to use – research ViaCord, Cord Blood Registry, and LifeBankUsa. If you want to save more cells, I’d suggest using LifeBankUSA and saving the blood from the placenta.

For further research and a new post (coming soon): Baby Teeth Banking.

Thank you

I can’t thank everyone enough for your prayers for Nathan.

THEY WORKED!!!

This morning he woke up a different child. He had some color again, was breathing better, and was back to his usual happy self. He didn’t run any fevers today and didn’t vomit once. He gave us quite a scare yesterday.

Another testimony to the power of prayer. THANK YOU!!!!!!

PS. He was doing so well we took him to see Toy Story in 3D. He LOVED it! And guess who was a perfect child during the movie? You guessed right – Ms. Belle! I’m not exaggerating when I say that little munchkin literally sat and watched the movie. Oh what have we done!

Pray for Nathan

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

PLEASE PRAY FOR HIM. Pray for a quick recovery. Pray for health.

Right now we are trying to keep him at home but tomorrow we may have to go to emergency.

Thank you for your prayers, we really appreciate your help for our little heroe.

Amazing new therapy

It’s called “Hold your kids tight and squeeze them with love while swinging in the hammock” therapy.

And my other favorite new therapy…it’s called

Dress up, watch, and play with your baby until your heart bursts with joy” therapy:

Happy Father’s Day

From Collages

I remember the day Nathan was born. There was so much uncertainty about his life, about his future, about everything revolving Nathan. But there was no uncertainty in your heart. He was your boy. Yours to love and enjoy. Your little buddy. That first night while I lay awake in fear, you were deeply asleep with your boy in your arms, with nothing but love and acceptance in your heart. Our son could not have a better father.

From that day on I have watched as you have nurtured and cherished your boy in every way possible. Whereas some men struggle to accept life with a disabled child, you embraced your son without a moment’s doubt. I’ve never seen you waver from your stance as your son’s protector and best friend. From the moment this boy was in your arms you have shown him off with pride, you have shown him the world and the world to him, you have enjoyed him and played with him and shown him to love life. Our son could not have a better father.

You have worked tirelessly day and night to provide him everything he needs. This boy has never lacked due to your effort and dedication. While others sleep you work and you work and you work some more – all to ensure that your son has everything, and more, that he needs. You have sacrificed your own wishes to do everything in your power to help your son. All the while loving and accepting him just the way he is. Our son could not have a better father.

You have been his body, wearing him on your chest like a badge with pride. You have walked so he could see the world. You have run so he could know what it’s like to feel the wind in his face. You have hiked so he could know nature. You have worn him on your body like an extension of yourself. In your arms he has seen Europe, Singapore, Thailand, Colombia, Canada. In your arms he has played the drums, the guitar, played with cars, climbed jungle gyms, slid down giant slides, watched movies and tried all the rides at Disney. Through your body he has lived the fullest life any child could live. Our son could not have a better father.

And then there were 2. From the moment you knew there was to be another baby you experienced nothing but joy and anticipation. You knew you were in trouble the moment you found out you were going to have a little girl. Your little girl. And in trouble you are. From the moment you held her she melted into your arms. She knew whose arms she was in when she was just 1 week old and you held her up in your shoulders to show her the world. With you she opened her eyes wide for the first time, ready to take in the world. Every night you walk her around for hours so she can see everything, feel the wind on her face, hear the crickets outside at night. It was with you when she first cooed, with you when she first crawled on her belly, with you that she learned to be bossy and scream for attention. Our daughter could not have a better father.

When I dreamt of having children and imagined the father they would have, it wasn’t you I dreamt of. You surpass all of my waking dreams. You are everything I wanted for my children, and so much more. Your love, dedication, and devotion to your children is simply indescribable. Our children could not have a better father.

Happy Father’s Day to the bestest father in the whole wide world.

Insights

Today I read a book called “Your Inner Physican and You”, written by John Upledger, the guy who invented CranioSacral therapy. It was FASCINATING. For anyone who is interested in learning more about central nervous system function and how to improve overall physical and emotional health – I highly recommend this book.

Here are some of the highlights for me:

* Chronic conditions may be caused by subtle physical conditions such as positioning of the spine, skull bones, etc. For example, he describes reducing spasticity by working on cranial bones and the sacrum.

* There are emotional components to physical health. He describes a technique called somatoemotional release. By working with his hands he descovers areas of the body that have retained emotional trauma leading to imbalances.

* Subconscious memories can have very deep, long-lasting effects. He describes many stories of working with patients who’d had experiences when they were very young (one as young as 2 days old), and what they heard and felt changed their physical health for the rest of their lives. Think of all the things we do and say around our children that we don’t even think twice about?

* Intention matters. He describes the difference between healers is their intention and the belief in their work. He talks about healers who don’t really believe they can help, so they don’t. Then he talks about healers who have a profound belief in their work, so they have miraculous results. Intention also relates to the patient himself, therapists, parents, caretakers, etc. If we believe the person will not get better, it is likely he won’t. If we believe he will, he has a much greater chance of improvements.

* He talks a lot about hands-on healing and directional healing. He talks about simply using his hands to heal, without using specific craniosacral techniques. He describes feeling his hands heat up, and with this heat comes healing. He claims he has measured this heat and electrical responses when using his hands for healing and can scientifically proof the effect of hands-on healing. He also describes “directional healing” which means putting one hand on one side of the wound, and the other around the wound, and ‘sending” energy from one had to the other. This apparently causes healing.

Reading this book answers many questions I’ve recently been asking myself. Specifically:

– Why so some therapies work so well for one child, then you take another child and the therapy doesn’t help at all?

– Why do these very subtle therapies work so profoundly? ABR, Rolfing, ABM – they are all so subtle. Now I understand better. They are using energy to activate and strengthen the body. Most importantly they use energy to ignite the body’s self healing responses.

– Reading this book has given me a much better udnerstanding of ABR. This is exactly what ABR is – feeding the body and cells with energy. No wonder ABR is so effective!

– Why do I have to work on so many levels with Nathan? Because the body is so complex, and when the “quarterback” (the brain) doesn’t work, many things start to malfunction. If the craniosacral system isn’t working properly, many other bodily functions are negatively affected.

– Upldedger describes our Inner Physician – he claims we all have an inner physician that can help us heal. This is an innate desire to heal and improve. If you combine this inner physician with brain plasticity – then you can conclude that the body/brain always wants to learn and to improve. So what the lady from the Carter Centers told me about kids with holoprosencephaly not being able to improve – baloney. Perhaps it may require more effort and time and intensity – but kids with HPE are human and have craniosacral systems and inner physicians like everybody else, and the body’s tendency is to strive for healing. So if we provide opportunities, they will improve.

I have to admit I feel excited, encouraged, and so grateful that this book fell into my hands recently! I am more motivated and excited than I’ve been in a while!

If I had to do it all over again

I would pray my heart out all over again, and ask everyone to pray

I believe Nathan’s life and health is because of the outpouring of prayers he received after the pre-natal diagnosis. Those 4 weeks of prayers changed everything for him! He was diagnosed at 36 weeks gestation because he had stopped moving and growing. So we asked everyone to pray and everything changed!

I would ask for 2nd opinions

It was my trust in Nathan’s neurosurgeons reputation that made me believe I didn’t need a 2nd opinion. And this misplaced trust led to so much suffering and damage in Nathan’s early days. So if I could do it all over again, I would get a 2nd opinion about EVERYTHING, then make my own decisions based on the information presented by the doctors.

I would’ve avoided dairy and made his baby food at home

At that time I didn’t know much about nutrition so we gave him regular formula and then when we started eating, we just gave him the regular jars of baby food. For Belle I plan on skipping dairy altogether and making our own baby food.

I would’ve started him with alternative therapies right away

I would’ve enrolled him in early intervention but supplemented this right away with alternative therapies. I would’ve started him with craniosacral since birth. I woudl’ve started him on G-therapy immediately. I would’ve started with the cold laser immediately. And at a few months I would’ve started him on ABR, ABM and CME. Oh if only I’d know about all of this sooner!

I would’ve stimulated him and treated him as much as possible like a normal kid

Which is exactly what we did. We took him out everywhere with us. We travelled with him. We exposed him to the world. We made sure he enjoyed life as much as possible, and still continue to do so. In this regard – I wouldn’t change anything!

I wouldn’t have wasted so much time worrying

When Nathan was smaller I suffered so much. I worried about whether he would live, and if he lived, what quality of life would he have, what would be his future. I worried that I wasn’t doing enough for him, and how would he be doing if I did more. I worried about what would happen as he got bigger and we couldn’t carry him. I worried about him developing medical and orthopedic problems. I worried so much! If I could do it all over again, I would enjoy him more and know that as things arose I would deal with them. Worry is so useless! It’s the most useless of minds!

I would’ve taken better care of myself

I was so focused on Nathan that I would allow myself to become completely depleted, which would then make it hard for me to function. If I could do it all over again, I would make sure I was taking time for myself, enjoying life, and not forgetting to live my own life to the fullest.

What about you? What would you do if you could do it all over again?

Things to do this Summer

* Spend a few days at the beach

* Go for a midnight swim in our pool

* Have a real “girls night out” with friends

* Spend an entire day in bed

* Read a couple of novels (it’s been a while since I’ve read a book)

* Run barefoot in the rain (IF it rains!)

* Cook a nice meal for Owen

* Go on a child-free date night with Owen

* Go back to Hot Yoga

* Meditate daily

* Sleep close to the earth

* Watch the sun set over the mountains from our deck

* Give Owen a kiss at least once a day (the kids are a given 😉

* Do at least 1 thing for myself every day.

Stream of consciousness

This week I’ve been out of ideas of what to write. I’ve wanted to write something interesting but nothing comes to mind. Everything I want to write – cord blood banking, rolling, plus a few more… require research and time to write. And time is something I just don’t have. The little bit of time I have is usually after 8 pm, when Owen goes on Belle duty. But as Owen has been away, I haven’t had a minute off and by the time 10 pm rolls around and I’m finished working, I’m exhausted. Don’t get me wrong – I’m loving it…it just doesn’t leave time for me to research the things I need in order to write informative posts. Which leaves me with this…stream of consciousness.

By the way I am typing this on the Ipad. I ordered the wireless keyboard for when I get to borrow it from Nathan and it’s sooo sweet. I feel terrible that I forgot to send it with Nathan so he could “communicate” while in Montreal. We’ve really just started using Proloquo so he still doesn’t know how to get around it too much. I can’t wait for him to get really good with it.

The problem with prologue is Nathan’s accuracy with his hand isn’t too great. He has trouble crossing midline so icons that are on the other side of the hand he’s using..he has trouble getting to. I am not sure how to get across that hurdle. Maybe with practice? I wonder how I can find out if there’s a way to program an eye gaze device for the ipad? I wonder if I can speak with someone at Apple?

I got an excellent report from Montreal today. I spoke with mary who said Nathan is doing AMAZING in his therapy with Ramon. She sent me a video of Nathan doing his exercises really well – without crying! It was soo cool to watch. She said he was impressed with how well he’s doing. Ramon’s been training Mary to do the exercises and she said she feels really good about them. I feel so positive, so hopeful about this. It just feels sooooo RIGHT.

We spook with the ABR Center in Montreal and Owen and Mary are going to stop by to receive training on the next 2 exercises, plus they are picking up the necessary materials. Wohooo! Now we can start the new exercises that were recently developed by Leonid, which apparently are just fabulous.

And then in 3 weeks we go to San Francisco, to the Anat Baniel Method Center. Nathan is going to have a couple of appointments with Anat, and the rest with her team. We’ll be there for 5 days. Once we come home we should be ready to start “implementation” stage of all of these programs.

I know this sounds like a lot. It seems like a lot of different things to work on at once. But each therapy has a different objective. And fortunately they are all very passive – except CME. So out of the whole day the only therapy that is physically demanding for Nathan will be CME, which will only require one 45 min. session / day. The others are extremely passive and enjoyable for Nathan. I plan on doing “a day in Nathan’s life” video soon so you can see our routine.

And all of this makes me think about my “what if” post. All these trips, all this stuff. What for? One of my wonderful special needs mom friends emailed me and said, what if we’re supposed to do both? Use the journey and experience for our own internal growth, while externally doing the best we can for our kids? Makes a lot of sense doesn’t it? So long as we have no expectations of change or improvement, I think we can do both! That feels absolutely right to me.

Ok a quick update turned into a long post. And since I’m stream of consciousness’ing I’ll say…I miss my boys very much! Good night!

Life is Messy

Another insightful gift from EnjoyParenting.com

:: Life Is Messy… Get Over It! ::

In man’s quest to conquer nature, our culture has
developed an unhealthy aversion to the natural
messiness of life.

Heaven forbid you should eat an apple that isn’t nice
and round and free of bug bites. Those get made into
applesauce so we never have to see their messiness!

And if our high-tech, Star Trek fantasies were real,
we could avoid the messiness of birth and simply
“beam” babies out of the womb — without a drop of
blood in sight.

Even if you’re a “crunchy” parent who’s not afraid
of nature’s messiness, there may be other kinds of
messes you abhor, like the messy ways children learn,
explore, and process emotions. Or the messy way *you*
grow through parenthood.

Today, whenever you feel bothered about anything, ask
yourself, “What ‘messiness’ am I resisting?” Are you
not allowing your *own* process to be messy?

Well, get over it! Life IS messy. 🙂

Let life’s messes remind you how good it is to be ALIVE!

Girls night out

News from Montreal

About a week ago I got an email from Ramon’s assistant in Canada confirming Nathan’s appointment in Montreal with Ramon. I almost went PLOP. I had made the appointment when I was in Chile, and then about 3 months ago I emailed them and asked for more information. I was told to email someone else, which I did a couple of times, but never heard back. I assumed our appointment was given to another child and I was so involved in the pregnancy and birth I didn’t think about it any more. So you can imagine my surprise when I received that email a week before the first appointment! But since I believe in serendipity I figured this was meant to be as I had just realized that CME was a KEY missing piece in Nathan’s puzzle. So going to Montreal would help give Nathan a jumpstart and then I figured we could follow up with a good daily home program.

So off Nathan went to Montreal on Sunday. Belle and I stayed home because we couldn’t get a passport for Belle so quickly, plus she’s just too small. I spoke with Owen today and he said things are going well in Montreal. I found them an apt on craigslist that is 1/2 block away from the therapy center – score! And the price was soooo right. The apt is located in a busy area so all they have to do is walk outside and there is stuff to do. Nathan LOVES it! Owen said he’s really enjoying being out and about.

As for the therapy sessions, Nathan is doing well. Ramon said he is pleased as he is picking up right where he left off in December. He said Nathan is a little bit weaker than before (to be expected as he hasn’t really had active physical therapy in 6 months). However, he is doing his exercises well. Ramon reported that today Nathan did an aerial stand at about 85% (which is great). Mary is filming everything but I dont have the videos yet, so this is what the aerial looks like (from our time in Chile):

Ramon said he believes Nathan has lots of potential – which was really exciting to hear!

This is still very much in accordance with the plan that I posted a few days ago. We are simply using Nathan’s holiday from school (he was off this week) to get the CME piece of the puzzle sorted out. We already have the laser part and the hbot part sorted. Now if we could kill 2 birds with one stone and also work on the ABR part since they are also in Montreal, I would be sooo happy! Then when Nathan gets home we will start with our ABR/HBOT/CME/ABM/Laser therapy combo.

I will keep everyone informed as I hear more news from Owen.

I Heart Faces

Missing my boy…enjoying my girl…

Watch out Montreal

Because here comes Nathan!

Nathan, Owen, and nanny mcMary are heading to Montreal tomorrow for a cuevas medek intensive therapy session. They will be there for one week.

Belle and I are planning to spoil ourselves all week. We have joint massages scheduled and a joint manicure and pedicure. On Wednesday we’re gonna take my mom and grandma to the Santa Barbara beaches for some more R&R. We found a little cottage a few blocks from the beach for a fantastic price. We’re planning on staying 2 or 3 nights.

We’re excited about what this week will bring to all of us!

What if…

…the miracle that we wait and pray for is not for our children to be healed externally, but for us to find peace and healing internally?

What if God/Buddha/Allah gave them to us so we can learn unconditional love, acceptance, patience, compassion?

What if we are missing out on our miracle by focusing on changing/improving our children? Because our miracle is the fact that we have the opportunity to change so deeply, on so many levels? Not just for us parents, but for everyone who comes in contact with children with special needs? Friends, lurkers, therapists, strangers?

What if we got off the “Fix our Children” treadmill and focused more on internal healing for ourselves? Or at the very least, balanced the two?

What if we gave our own internal journey as much importance as our kids external journey?

What if we measured progress by our own rate of spiritual growth instead of what new things our children are doing?

What if our children, in their helplessness and their neediness, are the most supreme and exquisite teachers we will ever meet? That instead of them needing our help, WE are the ones who need THEIRS?

What if we lived in DisabledLand, where every single person was disabled and had limited abilities – would we still want our children to do more? Would the fact that their condition is the “norm” in DisabledLand mean that all of the a sudden they are okay the way they are? Is their condition so difficult to cope with because they are different from everybody else? Is it the comparison that causes the grief?

What if we replaced worry with faith?

The Great Escape

We put Nathan in the crawler.

We lowered to make it more like he’s crawling than just kicking.

He looked up and saw the door, and started running towards it.

He moved with great precision and purpose and reached the door to the outside world.

Once outside he ran towards the car. Time to go daddy! He was so proud of himself.

Time to start locking our doors!

The Puzzle

Having a child with severe special needs is a little bit like receiving something like this:

At first you don’t even know how/where to start figuring out how to help your child.

Our puzzle contains pieces in all areas of development – sensory, cognitive, communication, physical, equipment, accessibility, medical, etc etc

I confess that today, I finally feel that we are starting to figure out how to put all the pieces together to form a cohesive picture – a healthy, happy Nathan who is living to the max and receiving all of the opportunities that we can offer him. Here is what our puzzle is looking like:

Anat Baniel Method

Creates brain maps for movement and association of body parts.

Having neural maps for movement and being able to feel his body parts and how to make them work together enhances Nathan’s able to integrate and use CME.

CME

Teaches the brain to fight gravity and helps strengthen physical and neural connections for movement and being upright.

But in order to gain the ability to fight gravity he needs the body to be strong enough to support him.  Muscles are very expensive and the brain sends them the wrong signals.  This is where ABR comes in.

ABR

Releases and strengthens the myofascia and deep connective tissue, which preserves structure and enables function

For example, strengthening the myofascia and connective tissue in the chest enhances helps with trunk control and respiration, which in turn improves oxygenation of the brain.

HBOT

Oxygenation of the brain helps to feed the body’s cells and to wake up dormant cells as well as improve the function of existing cells.

If the cells are being “fed” rich oxygen and they can absorb it better, the brain will experience enhanced function.  Now that the brain is receiving more oxygen, it also needs to receive the proper nutrients.

G-therapy

Stimulates neurotransmitters and acts as a nerve growth factor

Now the brain is receiving both oxygen and rich nutrients to enhance its development.

Reflex integration

If infant reflexes are retained, they can disturb some or all of the functions of highre brain centers, including behavior, learning and the integration of gross or fine motor movements.

Now that the brain is receiving all of the proper information (ABM and CME), as well as being “fed” the proper nutrients and oxygenation, it needs help removing the “obstacles” that keep it stuck in useless loops (infant reflexes).  Integrating these reflexes is essential to free the child to learn and experience voluntary movements.

Cold Laser Therapy

The light and waves of the laser penetrate the body and feed the mitochondria, as well as helps the cells to duplicate without cell memory.

Since the cells are being fed all the proper messages through ABM, CME and reflex integration, the “clean slate” cells can then function properly as they have no memory of “damaged” functions.

GFCF Diet

The gluten free casein free diet keeps his immune system functioning optimally, which frees up energy so the body can focus on development, not on fighting allergies or infections.

Supplements

Having a healthy balanced immune system enables the body to absorb nutrients which in turn enhance central nervous system development. Key supplements are fish oils which enhance brain development, as well as B vitamins and others.

Putting the puzzle together

These are the key pieces of Nathan’s puzzle. Now the question is, how do they come together?

In the mornings he goes to school, and works on:

Floor time to get him to move on his own, communication with his yes/no buttons, soon they will also work with him on the dynavox, time in the pony gait trainer, cognitive goals, social goals.

In the afternoons, this is his home program:

From Random

Every 3rd week, the 1pm activity is replaced by an hour of Anat Baniel Method therapy. He does 1 week on, 2 weeks off.

After 6pm he goes out with his dad to ride his trycicle which he loves, to go swimming, to go to the movies or mall or the store, etc. That’s his “relax” time. And on weekends … well … we do almost nothing therapeutic, other than love and chill therapy 🙂

And my goal is to STICK TO THIS PLAN. We have explored enough, we now know what works and what doesn’t, and I believe this is what we need to do. Now, time for consistent hard work 🙂

The ABR’eal Truth

Since Nathan was little, we always played a game at the pool. I would pull him out to the edge of the pool, ask him to stand up, and when he stood, I would have him “jump” to the water. Today while we were at the pool I noticed something thoroughly depressing. He can no longer put both feet flat on the floor. His hippotherapist also told me on Friday that she is noticing mild scoliosis – he locks his left knee when he tries to stand, which makes his back tilt to the left. Recently I also noticed that he’s scissoring even when at rest, and that his foot is starting to look deformed. Basically, his body is starting to deteriorate and he’s starting to have a myriad of orthopedic problems. All the signs are there. I can ignore this no longer. It’s rapidly becoming an ISSUE.

My conclusion – it’s time to stop futzing around and time to get serious about ABR. I’ve talked about ABR in this blog. It’s one of my favorite therapies. But one that I have just never dedicated much time to.

Why? Because it’s so slow. Because it’s so subtle. Because I can’t SEE what’s going on. Because it’s very time consuming. Because it requires patience and that is my biggest deficit.

But lately I have come to understand many things. For example, the fact that ABR works by feeding energy to the cells. The fact that ABR bypasses the brain so, even with a damaged brain, it can help the child. I never thought I’d say that as I always wanted to do therapies that helped the brain. But now we are shifting gears and the fact that we CAN bypass the brain is a major benefit.

A couple of months ago I spoke with Leonid Bylum, the genius behind ABR, and he has been giving me more information on how and why ABR works. He even sent me a video specifically addressing the reasons for Nathan’s lack of head control from a structural point of view. So about 2 months ago we started the ABR challenge.

The ABR Challenge

I told Leonid that if he was so confident that his method could help Nathan gain control, why don’t we set up a “test”. He gave us a series of exercises to do, and a certain amount of time for each exercise. He said that after 50 hours of 4 specific exercises, Nathan should have better head control. So we started about 2 months ago, doing 1.5 hours on weekdays. We are now close to finishing our first exercise and 50 hours.

The verdict?

It works. ABR works. As subtle, as gentle at it is – it has a profound impact on the child’s body. We started with an exercise on the front of Nathan’s neck. I’ve noticed that he DOES have better anterior neck control – his head doesn’t flop forwards as much. We haven’t worked on the sides or back so he’s just as floppy in those directions. But the part that we’ve worked on – the front – is stronger, more defined, more controlled.

The Real Truth about ABR?

It works. I have long and hard resisted this truth. I didn’t want to have to spend 3 hours a day doing manual passive exercises on Nathan. I wanted ACTIVE exercise where I could SEE what is going on. But the reality is that Nathan’s structure is starting to suffer and unless we work on his structure, he will have to experience many painful surgical interventions.

All of the children that have been doing ABR that I have been following for the past 1.5 years have experienced structural, and functional, changes. All of them.

It’s time.

ABR is going to become a focus for us. An integral part of Nathan’s rehabilitation. Will it lead to functional changes? I hope so, but that is no longer my expectation for ABR. My goal is to help preserve Nathan’s structure to minimize painful surgical interventions. If Nathan also experiences functional changes, we will wholeheartedly welcome them.

So it’s official for me: ABR works, and is essential for Mr. Nathan. Time to buckle down and get to work.

Worry Less, Love more

I think this is so true!

:: Worry Less, Love More ::

Perhaps you’ve been led to believe that worrying
about children goes hand in hand with loving them.
But in truth, parental love is far more powerful
*without* worry than with it.

Worries focus all your attention on what you *don’t*
want and put you in a state of *fear*. This sends a
message to your child that you *expect* bad things
to happen. And since children naturally tend to meet
their parents’ unspoken expectations, worries are
self-fulfilling prophesies.

Today, if you catch yourself worrying, don’t worry
about it. 🙂

Instead, use your awareness of worry to shift your
focus in the direction of what you *do* want, and
reach for thoughts that soothe your worries:

“It’s not the end of the world.”
“It won’t last forever.”
“I’ve successfully handled worse situations.”
“We always find our way.”
…etc.

Before long you’ll start feeling hopeful, and you’ll
feel your heart opening, too. An open heart is all
you need for love to flow unconditionally…
unhindered by worries.

Source:

http://dailygroove.net/worry-less-love-more

Inching forward

And his reward…

And here he is, learning to communicate with his dynavox

While we work on getting the eye gaze, he is learning 2 switch scanning.

In the meantime, Belle zooms forward:

I am one proud momma.

Yes, the “crawling” isn’t pretty, he’s not really down on hands and knees. But he is MOVING. Do you guys know how long I’ve dreamed of seeing Nathan moving in any way, shape or form?

Once his brain understands that he can use his body to get where/what he wants, I think it will kindle his will which will then give him a motivation to work hard in therapy. Up until now he has never moved on his own. Now he can kick his feet and GO! I am sooo happy! And even if this doesn’t lead to anything … it’s SOMETHING he can do!!!

Part of me was thinking today…great, now we have to get his hands and knees on the floor…but NO. I am going to sit on my laurels and ENJOY this inchstone of Nathan’s! Good job Nathan, you are amazing!!!

And some more pics of Belle:

Decisions

You would think that the hardest thing about having a child with cerebral palsy is their lack of mobility..or the fact they can’t speak or walk or move..or the fact that you have to carry them around everywhere…or the fact they require so much work – surgeries, appointments, therapies.

In my opinion, the hardest part of having a child with CP is none of the above. I feel that the hardest part is the decisions that you, as a parent, have to make.

Which therapy is best? Where? How much? What medicines? What doctors? What surgical procedures? What orthotic devices? Equipment? What to fight for? How to allocate your resources? What is priority? When?

And even worse than the actual decision is the repercussions of your decisions. Because what you decide for your child can have very life-altering circumstances. If I don’t do X for Nathan it may affect his physical structure. If I don’t do Y for Nathan he may miss his chance to learn to do X, Y, or Z. You get my drift. Especially when you are dealing with medical stuff, like seizure medicines, other medications, orthopedic interventions. It feels like a house of cards.

Do you struggle with making decisions for your child?

Confessions

It’s been too long since my last confessions!

* Today I left the house and forgot to put on the pads to prevent breastmilk from leaking all over my shirt. I was a pretty sight walking around with round wet circles on the front of my shirt.

* Almost every time I pick up Belle and she holds her little head so nice and straight I feel a sharp stab in my heart. Feels so unfair to Nathan.

* I’m enjoying having to buy larger bras

* I smell like curdled milk right now

* I have bathed in poopy water 3 times in the last 2 days (she pooped while we were in the bath together), had to change shirts because I was covered in spit-up 5 times in the last 2 days, been peed on once in the last 2 days..and forgotten all about it with just 1 precious smile.

* My mission this week is to start exercising again. It’s time!