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Thursday, February 27, 2014

"On the road again....."

October! October? Really, has it been that long since my last post? Well, we do what we can, right?

So much has taken place over the past few months, I'm not even sure where to begin. So I'll start with the biggest news of all.......

For those that have been following our journey in therapy, you know that most of the time it has been a steady road. We tried traditional PT/OT, we switched to ABM (Anat Baniel Method), then we switched back to traditional again. Was it because we were unhappy? On the contrary. My experience with a child with CP has shown me that you keep doing whatever is working for them. 

In Colin's case, it means that when we see he hits a plataeu, we switch it up. But at the same time I research. And talk to other parents, and then research some more. During this time I kept hearing about a program called Conductive Education. 

CE, as it's known, was developed over 60+ years ago in Hungary. A man named Peto created it with the intention to give kids with Cerebral Palsy a chance to be as physically independent as possible. 

Do they promise your child will walk? No. The emphasis is on "physical independence". In all that I have learned to this point, I feel that is the key to happiness and fulfillment for Colin. To be as independent as possible. However, when you are born with a disability, that can make that reality seem a little more difficult to achieve. 

So cue to November. I found the ONLY local place here in Southern CA that had trained Conductive Educators, as they are known. In Claremont, over 45 min each way from our house!

All they could offer was 1 day a week, every Wednesday for about 2 hours. Since Colin had free time on that day weekly, I figured we would give it a chance and see how it worked. 

So if you can tell by the look on his face, this is how he felt about it in the beginning. Basically not happy. 

But as time went on, he grew to tolerate the session, and I saw Colin progressing again. Is he walking? No. But he is gaining strength in his body, and the improvements are seen in small increments each day. 

Because of that, I really wanted to see if I gave Colin the opportunity to do this for more than just a few hours each week, would we see better results. Which lead us to the program in Michigan. 

I will talk more about it in another post. The basic info is the place is called Conductive Learning Center, it was started with the guidance of the Peto Institute in Hungary, and they run a year round program. 

As our interest grew, we soon found out that our dear friends the Franks family from North Carolina were planning on going to the center too! But they were planning on going sooner then we had planned. 

So because we can, we decided to go at the same time. That way not only would Colin have a friend in the 4 week program, but so would Mommy!

Yes, I am scared, yes I am overwhelmed. 4 weeks in a city that is having a high of 40 degrees! Are we nuts?!?! Probably. But most of all, I just pray that this is the right direction for Colin. It's gonna be a lot of hard work for my little boy. 

So please pray for strength for Colin, good health for us, and a great experience overall. Onto the next adventure!

Thursday, October 31, 2013

"Come together, right now...."

So this happened! What exactly? Well, it was the first micro-preemie parent support group. And while the turnout was small (like 4 people that included me), it was definitely what the doctor ordered. 

There was cutie Jacob who was born at 27 weeks, Miles a 28 weeker, and Colin (my 25 weeker cutie). Our dear friend Johanna even showed up with her full termie for support. 

What did we talk about? You know, the usual chatter that is prevalent among micro-preemie parents: therapies, doctor appointments and the dreaded RSV season coming up! It all made for conversation that was never lacking. 

Now, the next step has to happen, and for now, I am not quite sure what that step is going to look like. As I said in an earlier post, I am looking to create a network that consists of micro-preemie parents like myself. The main reason is entirely selfish; I want to meet parents who are going through EXACTLY what I have been going through these past 2 years. Aside from that, I am open to suggestions. 

One thing I know for sure is that in my 2 year journey with Colin, I firmly believe that kids born in that specific zone of arriving at 27 weeks or less typically will all share some if not all of the same developmental/medical issues. More than likely, all of our kids suffer from these 3 areas:
  •  developmental (ranging from Cerebral Palsy to not meeting milestones at the appropriate time)
  • vision (ranging from blindness to some sort of vision impairment)
  • medical (usually breathing or intestinal digestion problems)
And while there are some kids in the 28 week to 30 week zone that also could qualify, for now my focus is specifically on micro-preemies for now. 

So, how can you help me bring everyone "...together, right now" like the Beatles song says? You can start by forwarding this blog and reaching out to parents that you know that have children born during that window of time. In time I hope to meet all of these parents and figure out a way that can best serve everyones needs. 

Why do I want to do this? Because I firmly believe in paying it forward. There has to be someone out there that has felt alone and wanted to find reassurance, advice, or to even just see another child like their own to have hope for their future. That is what happens every time I meet another micro-preemie family. 
Colin meeting his micro-preemie friend Pierce in North Carolina!
In the meantime, how is Colin? Plugging along, trying to charm everyone he meets! While we are no where closer to crawling or standing, we are just trying to be patient that one day he will finally take off. Our therapies have changed a bit. For now, we are doing: OT, PT and Early Intervention. 

Over the summer we took a break from ABM, we took some swimming lessons for a bit (which he LOVED!) and we got to do much needed travelling as a family. A few weeks ago we received the definite conclusion that Colin has the dreaded CP diagnosis (cerebral palsy). 

What does that mean for Colin? Nothing really. We knew he pretty much had it all along. We just had to wait until we were closer to his 2nd bday before anyone would "officially" diagnose it. For now it confirms the understanding that it will take a little longer for him to learn to stand and eventually walk. But I know in my heart that he will walk one of these days. (How is that for faith?)

Now we enter into the world of medical equipment like wheelchairs, gait trainers, bath chairs, leg braces, etc. We are also still exploring alternative therapies like Conductive Education, DMO suits (thanks Lindsay Franks for that one!) and even horse therapy! 

That is why starting my micro-preemie group is going to be so important. Creating a network of parents that are all going through the same challenges is going to really help Colin move forward. I just know it. And maybe more importantly, it will help others move forward as well.

So for now, Happy Halloween everyone, and stay tuned for more exciting news!

Monday, September 30, 2013


Things are about to get messy......
Hiya folks! I can't believe it has been a WHOLE year since I have last updated on this blog! But even if I didn't, there have been some amazing things going on this past year. 

While I am still going to provide updates on how Colin is doing, this blog is also going to serve as an information center for our next project. While we don't have a name or detailed focus yet, my group will simply be this: a place for micro-preemie mom's in Southern California to meet and share hope monthly. 

How am I going to do this? I have no idea. But everything has to start somewhere, and today is as good of a day as any. So if you know any micro-preemie mom's here in Southern California that might be interested in this, please send them my way. And for those of you who have forgotten what exactly a "micro-preemie" is, here is a GREAT infographic that I am using courtesy of Tampa Bay Times. 

Wednesday, October 31, 2012

Been having too much fun........

Here is my little Halloween lion!
Whew, I am barely getting in this post under the wire! I promised myself at least one post a month, and boy, has it been challenging with a little one at home!

So since we last updated you, we had been going to our ABM practitioner Brendan and had just finished an intensive session in San Francisco with a more senior ABM practitioner. Now, we are on a weekly schedule with our local practitioner, with 4-5 sessions each week. 

Colin has been responding VERY well to the therapy! His left hand, which usually is in a fist, is now open at least 40% of the time. That is HUGE for Colin. He consistently rolls from side to side, and while we put him on his tummy and he seems to not mind, he hasn't been able to get himself on his tummy. My mommy intuition is that his G-tube (which should come out at the end of November!) keeps him from naturally getting to his tummy on his own. So I'll be curious to see if he starts to roll on his tummy once the G-tube is out. 

Another thing that Colin loves to do is TALK (just like Mom!). Here is a video of our chatty little guy:

We are also working on sitting up, and we are making good strides! The one place that Colin seems to love trying to sit up is his bathtub. So we have started bringing his tub in his bedroom for him to play in, which he seems to enjoy. 

He also seems to enjoy water! Here is a fun video of his first time in the jacuzzi with Dad (sorry the sound of my voice is annoying!). 

Other than that, we have just been very fortunate to watch Colin grow and make progress (even if it is slow!). I recently learned of another local preemie family who had a daughter born at 25.5 weeks (just like Colin), but sadly, their journey with their baby girl ended a few days ago. If you can take a moment, please read about their story and donate to their fundraising efforts to help pay for the funeral costs. 

Link for Baby Jade Hood

Although we have Colin's birthday, Thanksgiving and Christmas coming up (whew!), I'm still gonna try to do my best to post once a month, if not sooner. So to make up for the lost time, here are some fun pics from the last month:

Mmmmm, I LOVE prunes!

Do these glasses make me look funny? Be serious.

Mom, I'm not really feeling this owl hat.

My sleepy boy while mom takes a hike!

Wednesday, September 19, 2012

The "Amazing" conclusion......(Part 3...........)

I know so many of you have been breathlessly waiting for Part 3 of our journey with ABM. I have said this before, but I will say it again, life moves SUPER fast when you are out of the NICU!

So in my search for an ABM practitioner, I was lucky enough to find one 10 minutes from my house. His name is Brendan, and you can learn a little bit about him and the practice HERE.

 My decision to start ABM sessions was not an easy one. The hard part was the fact that I was choosing to do what most in the medical community had considered "alternative therapy". NO ONE had heard of it, and every time I talked about it, I was usually meet with incredulous stares. 

Since we had already been working with a Physical, Occupational and Early Intervention Therapist, most wondered if I wasn't happy with the results that I had seen upon working with them. While this wasn't entirely true, a part of it was. Colin was scheduled to see each person 2x a week. Since there were 3 therapists, this would equal 6 visits a week, with most overlapping each other on the same days.

Soon, our weeks were spent either preparing Colin for a therapy, or getting him rested before his next therapy. Physical therapy was definitely the hardest. While the therapist meant well, I could soon tell that Colin hated the stretching exercises and tummy time that she would do with him. It would almost seem as if a part of him would mentally "shut down" while she would start to work with him. The one therapist that I felt really connected with Colin was the Early Intervention therapist. Her work consisted of "play therapy". In essence, this required her to just play with Colin to engage his brain in learning about his environment.

However, in order to add ABM, the practitioner advised me of one slight, if not huge, detail. He himself was open to whatever I decided, but the founder, Anat Baniel, STRONGLY suggested that no other traditional therapies were done while receiving ABM lessons. The belief was that the ABM work would engage their brain to a whole new way of thinking, that engaging in traditional therapy would confuse the brain and not allow the new skills to be learned.

Stopping all other forms of therapy seemed liked my only option if I wanted to have the best possible outcome with this therapy. When I told Colin's pediatrician that I was considering pausing traditional therapies in lieu of this one, I could instantly tell that this decision was crazy in her eyes. Mainly, most just wanted to make sure that this was not some scam bent on getting as much money from a desperate parent (since it is not covered by insurance or Regional Center, we are paying out of pocket for each session.)

But after much prayer and discussion with Rich, we decided that giving Colin every opportunity out there would only help, not hurt him. And as a way to hedge my bet, I decided that I would give this therapy 1 month. If I didn't see any radical improvements after 1 month, then I would go back to our regular therapies.

We started our sessions with Brendan in early August. The sessions take place at his home, and for the first one, Rich decided to tag along. We had no idea what to expect, and I guess that was a good thing. 

The first thing we noticed was how quickly Colin started to respond to the work. While it doesn't look like much, each gentle movement seemed to awaken something in Colin. Soon into the session, he was babbling up a storm like we had never seen! Below is a recent clip of him having ABM therapy in San Francisco (I'll talk about that in another post!). 

One thing that was amazing was after the FIRST session, Colin responded by relaxing his legs!!!!!!!!!!

Why do I use the exclamation points with such excitement? Because this was something that Colin simply DID NOT DO before this session. Every time you would pick Colin up in the past, he would react by tightening his legs and back. This brain process was started early on in Colin's brain, and once we started Physical Therapy, it was something that we always tried to work on to stop Colin from doing it. But with the traditional therapies, nothing would work. 

But with ABM, it was as if his brain opened up and suddenly realized what we were asking of him. At this point in time, scientific work about brain plasticity is in it's early stages, but as a parent to a child with brain damage, I feel that it is IMPERATIVE to educate myself about this field. On an intuitive level, I have determined that getting new connections established in his brain is going to be the ticket in getting Colin to overcome his current physical limitations. And with each subsequent session, I am seeing this develop in his brain, and I know in my heart that this is working. 

I could go on and on, but here is a TED talks video by Anat Baniel where she explains about brain plasticity and how it shapes her work. 

So please continue to pray for us as we go forth on this journey with an unknown destination. Prayers have gotten us so far, and I am excited to see how much farther we will go! 

Wednesday, August 15, 2012

Anat Baniel Method = Amazing Body Movements? (Part 2)....

So in our last post, I talked about The Institutes. In this post, I will talk about the other therapy we looked into, The Anat Baniel Method.

I was introduced to the Anat Baniel Method (or ABM for short) by many of the other preemie mommies that I have met online. I must say that I am very thankful to live in a day and age where connecting with other people in similar situations is only a few clicks away.

So on many of the other Micro Preemie mommy blogs that I read, I kept hearing how many of them were doing a therapy called ABM. What is ABM?

In short, ABM evolved from the earlier work of a man named Moshe Feldenkrais. His approach is more a form of self-education through movement as opposed to manipulative therapy that traditional therapies are based on (like physical and occupational therapy).

What does this mean? In short, the therapy shows a person (or baby!) how to find their place in space by using movement. (This is the best way I can describe the method without having yet read Anat's book. I promise I will Lindsay!). 

Anat was a student of Feldenkrais, and she evolved the therapy into her own method that she calls the
Anat Baniel Method (named after herself!). Here is a video straight from her website that includes testimonies and a description of the method. 

How is ABM different from The Institutes? In short, you can bring your child to a certified practitioner who has been trained by Anat's center up in Northern California. For many of my fellow micro preemie mommies in other states, finding a practitioner was a challenge. 

For them, practitioner's were few and far between in states on the other side of the country, since it would require that those practitioner's would have to travel to get trained in Northern California, then go back to their home state to build their practice. And since this method is still in it's infancy of gaining acceptance, few practitioner's have discovered this method. 

In my search for a local practitioner, I was lucky to find out that there was one 10 MINUTES FROM MY HOUSE! Kind of a sign, huh? Each session would be similar in cost to a traditional therapy session, but would not be covered by insurance or our state Regional Center. 

Still, it was considerably less than The Institutes, and since a practitioner was so close to me, I figured ABM might be our method of choice. I know some mommies in other states who have to travel 4 hours to their nearest practitioner, or even travel out of state, so I feel pretty blessed in that aspect. 

So what would a session look like? Here is a sample video with a simple description:

While it doesn't look like much, I was told by our practitioner over the phone that in the FIRST FEW SESSIONS I would start to see results. Say what? Needless to say, I was intrigued...............

(Part 3 to follow.........)

Tuesday, August 14, 2012

So what's the alternative? (Part 1).........

So in our last post I talked about therapies we were exploring for Colin. When we were discharged from the NICU, we were advised that we should start providing Physical, Occupational and Early Intervention therapies as soon as possible. The medical doctors advised us that this would give Colin the best option to overcome some of the setbacks he had from the NICU and overcome any physical disabilities caused by his brain bleed.

As I have mentioned in various posts, in California, the state provides automatic funding for therapies for kids that were born with "An Established Risk Condition". In Colin's case, because he was born so early and suffered a brain bleed, he automatically qualified. However, the drawback to allowing the state to pay for the funding is that they mandate how many sessions they believe would be beneficial for Colin for a predetermined amount of time.

For this reason, I decided to go through our insurance for his Occupational Therapy and let the state pay for the other two. I considered Occupational therapy as the most important one, because this was going to help him to transition from using his G-tube to eating by mouth.

Well, we soon started all 3 therapies, and all were going good. Lucky for us, Colin didn't need much help with Occupational Therapy, and he switched from his G-tube to eating with a bottle with no problem.

Yet over time, I was still feeling like the therapies were ALOT OF WORK. For those with special needs kids doing therapies, you find that your life is CONSUMED with so much time going to therapies, preparing for therapies, and planning therapies. And as you can tell below, sometimes it got to Colin too.

Colin pooping out DURING a therapy!
Colin seemed to enjoy his Early Intervention therapy very much. This therapy pretty much consisted of him "playing" with his therapist. Basically she would show him toys to help his eyes track, or expose him to different textures and sounds, etc. You could literally see his little brain light up with interest during this time.

The other therapies really focused on having him meet his milestones for his age, like rolling over, holding his head up, etc. These he usually DIDN'T enjoy as much. He would be polite for the first 5 minutes, then the rest of the time, he would fuss and sometimes cry while he was put into positions he didn't enjoy, like tummy time. Tummy time is done by ALL parents to help ensure that their kids can be on their tummy to hold up their head and eventually crawl. (This is a little info for your non-kiddo parents!)

So to make sure were were exhausting ALL our options, we started looking into alternative therapies. We focused on two: Anat Baniel Method and The Institutes for the Achievement of Human Potential. In this post, I'll talk about The Institutes.

"The Institutes..." (for short) was recommended by Colin's wonderful NICU nurse Krystal, who has become part of our family and whose opinion we value MOST HIGHLY.

Colin getting some attention from Krystal on his discharge day!

She had known a few families that had gone through this program and had seen REMARKABLE results in their kids. Because she had this first hand knowledge, I was intrigued by what it could offer.

In a nutshell, the Institutes was started in 1955 by Glenn Doman. Many of you are probably already familiar with him, as he created the "Your Baby Can Read" program. After working with many patients with brain injuries over the years, the Institutes created a program that they believe can reverse or eliminate the effects of brain damage.

Parents are required to travel to their center in Pennsylvania and complete a weeklong intensive training course that teaches them how to work with their child. The program that the child will complete at home is intensive, and consists of:
  • Patterning – manipulation of limbs and head in a rhythmic fashion
  • Creeping – forward bodily movement with the abdomen in contact with the floor
  • Crawling – forward bodily movement with the abdomen raised from the floor
  • Receptive stimulation – visual, tactile and auditory stimulation
  • Expressive activities – e.g. picking up objects
  • Masking – breathing into a rebreathing mask to increase the amount of carbon dioxide inhaled, which is believed to increase cerebral blood flow
  • Brachiation – swinging from a bar or vertical ladder
  • Gravity/Antigravity activities – rolling, somersaulting and hanging upside down.
Once home, starting the program requires 3 adults, completing some of these tasks daily every hour for a certain amount of time. Then the child is reevaluated over time, and the program is adjusted for the improvements.

Below is a sample video of what a typical session at home would look like. No need to watch the WHOLE thing, but a few minutes of viewing and you will get the gist.

Here is another video that shows some of the equipment that parents would use at home.

Pretty intense, right? But look at some of the amazing results:

This little girl has similar issues to Colin.

For us, we are VERY fortunate to say that money is not an issue for us. We are willing to travel to the ends of the earth for Colin, no matter what it costs. And needless to say, this program not only costs money (not just to complete the course, but to travel there, buy the equipment, etc.), but would require lots of time and energy on our part.

But was this the right decision?............

(Next post we will talk about the other method we were looking into, Anat Baniel Method).