Archives for February 2008

Trauma and Could it Be?

I am exhausted and slightly traumatized.

Nathan screams and screams during the patterning. He is becoming less effective on the incline plane, and gets mad the moment his belly touches the floor. Am I traumatizing him? Am I hurting him? My arms hurt from trying to overpower him during the patterning. My soul hurts from putting my baby through all this.

But in my heart I think this will help him. Deep in my heart I know this is what’s best for him in the long run. I can already see very slight improvements. He is eating better. He has slightly improved head control. He is moving his legs more when he is not patterning.

I can understand his pain. His body probably hurts from the unusual movements. His heart aches from knowing mommy and daddy, who previously bent over backward to do whatever he wanted, are now forcing him to do difficult things with his body. And I wish I could make it stop. But stopping now would be a much larger injustice to him in the long run.

It leads me to wondering..could it be that the fact he is so so so delayed with motor development relate to the fact that we have NEVER made Nathan spend time on his belly? He’s always hated it so much that we’ve just never forced him to do it. We believed that he was getting enough conventional therapies that tummy time wasn’t that important. Could it be the reason why his body is so unable to move?

Everything I’ve read about brain plasticity indicates that his brain should be able to compensate. I’ve been reading about a lot of kids with holoprosencephaly, CP, and other brain damage that have gained important skills and mobility. Could the difference be that these kids are made to spend more time on the floor? This is what Glen Doman claims in his book about brain injury. One of the single most important realizations he made was that the brain injured children that progressed the most were the ones that spent a lot of time on the floor on their bellies.

We are already working on floor time, we have been increasing the amount of time Nathan spends on the floor. But now I am afraid that the emotional trauma will block his ability to do anything while on the floor on his belly.

I have sought out help from the people at Reach to give us ideas about how we can help Nathan enjoy the patterning. Hopefully I will hear back from them soon.

And I wonder..when we were teaching Nathan to go to sleep..we had to let him cry a few times for him to learn that we weren’t going to “save him” when he woke up in the middle of the night. Then, I had to teach him to go to sleep on his own in the same way..he cried a few nights, then learned to fall asleep on his own. Even lately, we had to go through the same thing for him to learn to fall asleep on his own, in his crib, for his morning nap. But now he can do all three of those things, after a few days crying. Maybe we just need to do the same with floor time and patterning?

I hope to report good news during my next post.

Coolest neurologist ever

When you realize there’s not much the medical community can do for you, there’s one kind a doctor I really like – one that will help us out.

Today I took Nathan to see a neurologist. I was honest and told the doctor the only reason I was there was that I needed lots of prescriptions. We talked for a little bit, he carried Nathan, who subsequently spit up all over him, and then asked me exactly what I wanted.

I said, I need a wheelchair, a stander, a gait trainer, a vital stim machine, and a feeding chair.

He wrote them all out, handed them to me, and told me to come back in 3 months.

My first words out of the office were – SCORE! I love that kind of doctor 🙂

Now I can start the process of getting him all that stuff. I’ve found the stuff I want:

– Wheelchair: http://www.thomashilfen.de/easys/index_english.htm
– Stander: http://www.standingdani.com/kidsterdani.shtm
– Feeding chair: http://www.adaptivemall.com/sptososi.html
– Vital Stim: http://www.vitalstimtherapy.com/aboutvs.asp?section=patient&topic=whatisvs

Hopefully I can get CCS or insurance or someone to fund all this stuff. We’ll see!

As for today’s REACH program – same old same old. We only did 2 sessions and Nate complained the first one, screamed the second one. But we will forge onwards as I really believe this program is going to make a HUGE difference for him!

Here’s a video of him on the incline plane today:

2nd day of Reach

Today we had a similar experience as yesterday. We only got through 2 patterning sessions. During the first one, he cried and cried, it was heartwrenching. I had to go away afterwards and meditate and really get my mind straight.

For the second one, I talked and talked to him. I explained why we were putting him through this. I told him I loved him and just want to help him. I tried to set a really good intention and peaceful heart. It worked! During this session he complained but didn’t cry – I even got him to laugh at one point! So things are looking up a bit.

In the end, sesame street and the IPOD didn’t help, but good old fashioned love and respect was the key.

I think the new movements and exercises are wiping him out. He is sleeping more and by evening is exhausted. He went to sleep at 7:20 pm today, which is highly unusual, usually he goes to bed at 8:30pm.

I hope tommorrow we can fit more sessions in, right now I am wondering how we are going to ever get through 6 sessions!

Web video to Ipod

I found the coolest thing today:

Online Videos to Ipod

So I downloaded a few of the videos from video.sesameworkshop.org and now I have them in my Ipod! I’m stoked.

Hopefully this will keep him entertained and his mind off the patterning tommorrow. Cross your fingers!

1st day of Reach Program

Today was a bit rough. We tried starting the full Reach program but couldn’t get ourselves together. We only did 2 full sessions, and we were supposed to do 6. Part of the problem is I double-booked PT, so he had 2 PT appointments and one OT, so he really did 4 hours of therapy, including the 2 sessions. I am so proud of him for having done this. But I have to get better organized if we are going to implement this program successfully.

Highlight: Nathan figured out real quick that the motions we were practicing in patterning are the same motions for getting himself down the Incline Plane. The first time, on Friday, he just layed there, without moving. Then in the morning he kicked a little and slowly moved his way down, and by the last time today, he was kicking and moving his arms to get down the plane! The motions were quite awkward, but it’s just the beginning 🙂

The tough part was that Nathan cried through the entire patterning series. He was not happy about having his limbs moved without his consent.

I am going to try to upload Elmo to my Ipod and get him to listen to elmo while we do the patterning, it’s the only thing I can think of.

He LOVED everything else, especially the flash cards.

I promiste tommorrow I will put up videos.

Pathways to peace

I’ve been reading a lot about brain development and plasticy – it’s such a COOL topic!

One of the topics that really picqued my interest is brain mapping. Apparently, the brain is divided into tons of brian maps, with geographic divisions for different parts of the body. Image the brain as a map of the world, but instead of countries you have parts of the body, and instead of states and cities you have more and more detailed parts of each city/state. So, if you touch something with your index finger, there is a specific part of the brain that processes data from that finger, that lights up, meaning it becomes “activated” in order to process that data and send the electrical signals needed for the body to respond.

What’s really cool which I’ve been reading about in “The Brain that Changes Itself” is that the map of the brain isnt’ static. It changes all the time, based on stimuli. Also, there are different parts of the brain that processes the same thing, for example, the “face map” is spread accross most of the brain, and various areas are called upon to process sensory input from the face.

Now, the really really cool thing. There is a theory that “Neurons that fire together wire together.” This has many implications in terms of bevahior. Our actions and thoughts create pathways in our brain. So if every time someone insults us, we get angry, we are creating related pathways, so eventually, us getting hurt by something/someone makes our anger neurons fire. Eventually, they almost become one process, instead of two distinct processes. The more we use these pathways, the more fine tuned and established they become, giving rise to “cortical dominance”. Which is why sometimes habits are so very hard to break – because the brain is a super expert in reacting in this way. Other ways of reacting are weak or inexistent so the brain isn’t able to react in those ways.

Makes perfect sense, doesn’t it. I’ve been learning about this for years and years in meditation classes, but now I have a scientific, actual explanation for the importance of meditation.

What do we do when we meditate? We establish new pathways. And over days, weeks, years, those pathways become stronger and stronger. And since we meditate on virtuous things, we are changing our reactions and our brains, training ourselves to become more and more peaceful.

One thing that supports this is one of the treatments mentioned in the book for Obsessive Compulsive Disorder. Appparently, one of the most successful treatments uses “redirection”. When the person with OCD starts obsessing, the treatment requires for them to stop and redirect their mind so they think about something else, specifically something that makes them feel happy and peaceful. They have to stop what they’re doing and focus on this new, positive thought. The person that proposed this treatment then took images of the brains of his participants, and they found that this treatment changed the structure in the brain. Whereas previously they were trapped in a thought loop, where certain neuorns wouldn’t stop firing and they kept going in circles, this treatment broke that loop and gave them control over their compulsions. I’m probably butchering the science of it and the details found in the book, but I think the general idea is valid. Amazing, huh!

Another really cool study focused on changes over time. They gave a group of people an intensive therapy. What they found was that on Fridays, certain parts of the brain that were processing that information had expanded. But mondays, that part had returned to its original size. However, over months, the monday parts of the brain did grow, and function reflected the size and agility of the monday scans, not the fridays. So I was thinking about how hard it is to effectuate change. It seems that you do something, and you get better, but very soon, you lose that and have to start all over again, especially if you are not consistent with your efforts. However, if you remain steady and keep on going, over weeks and months, the brain will definitely change. To me, this proves that change is possible, even in stubborn adults!

So why am I going on about this on Nate’s blog?

Well, it’s just such cool, revolutionary information for me, I wanted to organize my thougths a little bit and share my excitement. For me personally, I think this will encourage me in my personal journey, especially to eliminate the ups and downs in my journey with my boy. I know recognize it’s a journey and I am trying to be honest here about what it’s like. But I think that if I remember this, over time I will be able to make myself a better, more peaceful brain.

Also, all this stuff gives me so much hope for Nate. His brain has already shown it is able to adapt and respond to stimuli. So if we keep working hard and consistently, I have no doubt he will develop more and more pathways.

Okay back to work now 🙂

We met a cool family!

Today we met some friends in Eagle Rock for lunch. At this place, the servers didn’t bring you water so you had to go get it near the counter. Since I drink like a camel, I had to get up several times for a refill.

During one of those times, I noticed a child sitting in a Tomato seat, which was attached to a stroller. Usually, I am very discrete and I have NEVER approached another family of a child with special needs. I never know how people will feel/react, so although I am usually dying to talk to them, I stay quiet.

Today I couldn’t help myself, the sitting device was really cool, so I approached the family. Of course the first thing I said was, “I’m sorry I don’t meant to stare or disturb you, but I noticed the cool seating system and I’d love to know what you’re using. I have a son with special needs too!”. So of course the family relaxed right away and the mom started talking to me about her son.

We only spoke a few minutes, I didn’t want to be rude and interrupt her meal, but in that short time she told me she’d tried stem cell therapy for her son and that it had really helped him. She also gave me her card, which had his website.

Of course, the first thing I did when I got home today was to run to the computer and check out the website. I spent hours reading through Soren’s history, their experiences, and much more. I was so inspired! They have tried many thigns to help Soren, and he has responded so well. I was really impressed by his head and trunk control, you could tell they had all worked very hard to help him develop the ability to hold up his head.

I found out about all sorts of interesting things. Soren also went to UCLA intervention. They’ve also triend IMOT at a center similar to NAPA. They’ve had quite a lot of success with stem cell therapy. They’ve had many fundraisers to help pay for Soren’s therapies and equipment.

I was really inspired to see everything they’ve done and how it has benefitted Soren.

So today I go to bed eager to catch Amy on the phone and to start asking asking asking. Soren is 4 now so they’ve had a few more years of experience than us, so of course I am very interested in learning everything I can! I am excited! Stay tuned to this channel.

This is Soren’s website:

http://sorenrogers.blogspot.com/

Reach Trial

Today we did our first trial of the Reach program. I got everything together and we went through one session of all the exercises we were given.

Nate did REALLY well!

He complained through the whole five minutes of patterning, that was the hardest part. But after that, there were so many quick exercises that his interest was totally piqued.

We put him on the incline plane and at first he didn’t move at all. But after a little coaxing he started moving a little and realized that if he kicked and moved his arms he could slide down and get closer to Elmo. So he was able to make it down the plane on his own! I will post a video on Monday when we start the program fully.

Floor time was okay as the periods were so short.

We are excited to get moving with everything. Here is my final schedules and checklist:

Stay tuned for our official launch on Monday!

Brain Powder

This week, we put Nathan on an herbal remedy, nicknamed brain powder, that was sent to us from a doctor in Malaysia:

The Tole

I have no idea if this will have any effect at on on Nathan. But at this point I am in the, “turning over every stone” stage. We are going to try everything we think that can help Nate. This is one of them.

So far the only change I have noticed is that he has been taking longer naps.

Today, during PT, he had increased stamina and worked really hard for a whole 45 min. session.

Other than that, everything is pretty much the same.

I just wanted to docuent this and I will keep posting observations!

Oh, here’s Nate’s new toy:

The Flip Side…

I’ve been feeling so hopeful and happy that I can almost see Nathan running around our house.

Generally I have this capacity to visualize things, and sometimes I forget to relate to the reality and instead I relate to the image in my head – the expectation.

I have been on such a high after our recent trip that I was already imagining all of the progress Nathan would make.

This evening, reality bit hard. Owen was sitting on the couch and Nate fell sideways. I could tell he was trying real hard to bring himself back up. He didn’t move an inch. It was sad, and hard, to see the reality.

Which reminded me of something my dad recently said – your problem is your expectations. If I allow myself to have expectations, then reality can be painful, unbearable.

However, if I have HOPE without expectations, I won’t have a cause to feel sad, disappointed, anxious.

So..the lesson of the day for me…check your expectations at the door. They only lead to pain.

Acceptance and Hope

I never thought that acceptance and hope could coexist. I certainly felt the same way about acceptance and peace. How could I accept that my son might never learn to walk or talk, and be happy?

A couple of days into our trip, I finally felt a deep deep level of acceptance. For the very first time since I heard Nathan’s diagnosis, I allowed myself to imagine and accept Nathan completely. I imagined him in a wheelchair, unable to move or speak. In the past, I’d only felt horror at this thought. And for the first time I didn’t freak out. Instead, I allowed my mind to stay there, to imagine what life would be like. And I found that life would still be wonderful and joyful. That Nathan would not change, that Nathan would be Nathan, and that we would enjoy every minute of his existence. And instead of wanting to lunge head forward into the sand, I found peace. I finally felt that, no matter what, we would all be okay. It felt like jumping into a nice hot spring in the middle of a cold winter day.

I found that acceptance didn’t mean passivity. After experiencing this feeling of acceptance and peace, we went for our consultation with the REACH program and were encouraged not to give up our hopes and expectations for Nathan. We were given a specific program that has the potential of benefitting Nathan. And for the first time, Owen and I felt secure in the knowledge that we were on the right path. We felt that we could accept Nathan, while giving him as many opportunities as possible. For the first time, this didn’t feel paradoxical. We can accept and maximize at the same time.

We feel hope. We feel that the harder we work with and for Nathan, the more he will learn, the more he will progress. Especially in these first critical years, we feel that we have a good chance of helping him develop functional skills. Maybe he will learn to move, maybe he won’t. Whatever happens, I now know I can feel peace. Acceptance and Hope can coexist.

REACH

Our appointment at Reach went really really well. Charles and Consensao are lovely people and seem very compassionate and eager to help Nathan as much as they can. They are kind, knowledgeable people and took the time to answer all of our questions and to give us lots of information about how we can best help Nathan.

Here is a copy of the developmental evaluation and where Nathan is on the chart. There are some areas where his skills are “Functional”, which means that he has them but he has problems. For example, he understands tactile sensation, but his hyporesponsive to touch, meaning he has little feeling in his extremities.

Here are some of the notes from the meeting:

VISION:

* Good pupil dilation
* Good pursuit in every direction
* Convergence: Left convergence strabismus at near point – when light approaches, left eye goes out slightly, right eye continues to follw at close range.
* No apparent strabismus
* Convergence problem is very slight
* Recognition of objects and pictures is very good

HEARING & UNDERSTANDING:

* Startle Reflex is persistent. He continues to react, instead of assimilating to a loud sound.
* Response to threatening sounds is inappropriate, so it is functional. He should’ve been scared when reacting to a loud sound, instead he laughed.

TACTILE ABILITY

* Babinski: Correct response is positive babinksi, big toe goes up & toes spread. As babies grow, the toes should contract. Since Nathan is still reacting by spreading, he has a persistent reflex, meaning this is functional.
* Response to pain: Not responsive to pain. High tolerance, especially in the legs.
* Skin sensation is functional. He is not ticklish, not responsive to a light touch.
* Spatial awareness – knowing where your body is in space – sitting, crawling is where this skill is acquired. He does not have this skill, as he’s not mobile, so he doesn’t know where his body is in space.
* Thirs Dimension: Differences in textures, the difference between paper & table, etc. He does have this recognition.

MOBILITY

* Active movement of limbs – functional – bad head control, tight hand & limbs. Still on level 1 for mobility.

LANGUAGE:

* Expressive sounds – Functional – not full range & tonality, doesn’t babble with a variety of sounds, like mama, dada.

MANUAL ABILITY:

* Grasp reflex: If you put your finger in a baby’s hand, they will grasp your finger without letting go. Later, they will learn to let go. Nathan hasn’t learned to let go, so he is at the level of grasp reflex, and it is functional, as he is tight.

SUMMARY:

Nathan’s sensory skills are very good. He has difficulty expressing information, not receiving information. It is likely that his problems are with mid-brain development, the mesencephalon.

GOAL:

To increase neurological organization.

PROGRAM:

TACTILE:

* Patterning – 6 times a day – 5 minutes
* Brushing – 6 times a day – 1 min.
* Tapping – 6 times a day – 1 min
* Caress – 6 times a day – 1 min
* Hot & Cold – 3 times a day – 1 min
* Tickle – 2 times a day – 1 min.
* Trigeminal massage on the face – 6 times a day – 1min.
* Trigeminal massage inside the mouth – 6 times a day – 1 min.

These exercises are meant to increase his ability to process tactile stimulation. This is related to his mobility problem. If he cannot properly feel his limbs, he will have trouble moving and controlling them. By stimulating the part of the brain that processes tactile sensations, he will gain increased awareness of his limbs and consequently, increased control.

VISUAL STIMULATION

* Read a baby book – 6 times a day – 3 minutes.
* 5 sets of picture/word cards – 4 times a day. Each set will consist of 3 pictures and 3 words corresponding to the picture. They should be related.
* 1 set of dot cards – 4 times a day.

We will show him flash cards 24 times a day in order to stimulate his vision and to teach him to recognize words and objects. The cards will be flashed quickly. New cards will be introduced every day so he’s not seeing the same cards all the time.

AUDITORY STIMULATION

* Sing a song – 6 times a day – 3 minutes

Songs should be accompanied by hands movement, for example, itsy bitsy spider, the hokey pokey, etc.

MOBILITY

* Floor time on his belly – 18 times a day – 15 seconds (the duration will increase over time, and the frequency will decrease)
* Incline Plane – 6 times a day – 3 minutes

This will teach him to move his arms and limbs in a purposeful manner, which should result in army crawling on a flat surface. Initially, we will use the incline plane (gravity) to teach him that if he moves his limbs, he can move forward. The incline plane will be gradually lowered as he becomes more and more effective at moving.

NUTRITION

* Diet should be natural. Avoid processed foods, including flavorings, coloring, additives, preservatives, chemicals, etc.
* Feed him fresh foods, nothing canned
* Fresh is better, then frozen, last is canned
* Whole foods are better than refined, for example, whole wheat bread instead of white bread.
* Feed him slow sugars instead of fast sugars. Slow sugars are fruits, vegetables and whole grains. Fast sugars are the ones we take in juices, candy, sodas, etc. This way he will have more sustainable energy, which he will need for the program.
* Organic food is ideal.
* Omega 3 fatty acids – very helpful. It can be found in fish from cold water (salmon), cod fish, and sardines. The problem with these is mercury. Flax seed oil is a good, natural, healthy replacement.
* Vitamin C is good for him. Powdered, buffered, vitamin C, 3 times a day.
* Acidophilus for healthy digestion.

This is what a session of this program would look like:

Exercise Duration
brushing 1 min
patterning 5 mins
tapping 1 min
song 3 min
incline plane 3 min
visual stim 1 group
arm & leg swing 2 mins
read book 3 min’s
floor 15 sec’s
soft texture stim 1 min
visual stim 1 group
upside down swing 30 secs
floor 15 sec’s
visual stim 1 group
rocking 1 min
visual stim 1 group
hot & cold stim 1 min
floor 15 sec’s
trigeminal face 1 min
trigeminal mouth 1 min

This series of exercises will create a session, and should take about 30 minutes. We will do this 6 times every day.

The paradigms that are being used is that of brain plasticity, neurological organization, and stages of development. Their theory is based on the idea that the brain is capable of changing and adjusting constantly. The more information that the brain receives, the more information it is able to process. The brain also changes structurally to reflect the feedback it is receiving. Function determines structure. So if there is a need for a certain function, the brian will adapt and change it’s physical size and geographic parameters to adjust for the functional needs. As the brain becomes more and more sophisticated (more neural pathways, improved connectivity, etc), the brain goes through a process of neurological organization. The more organized the brain is, the more effective it will be in processing data. If a part of the brain is damaged or malformed, there is an area of disorganization that prevents the brain from developing higher, more sophisticated functions. If neurologic organization is enhanced, and the brain is “fed” with exericses that will allow it to adapt to the damage or malformation, it will then maximize what is currently there while creating different pathways to process information. Also, structural changes will occur that will allow other parts of the brain to take over and process data that the damaged parts can’t.

Having read “The Brain that Changes Itself” by Norma Doidge, I totally believe all this is true. The only question is whether these particular exercises will allow Nathan’s brain to change structurally so that other parts will take over for the malformed parts. Charlie and Consensao believe this can happen, as Nathan’s brain has already shown it is able to adapt. He is missing his occipital cortex, yet he is able to process vision almost perfectly. If vision has already been compensated for, why not motor skills?

We feel really hopeful that that this program will help Nathan. We know for a fact it can’t hurt, and we hope that we will satisfy his insatiable intellectual curiosity. This is a child that is hungry for information. I wish I had filmed him at Rutgers during the neurocognitive assesment. He was so interested in all of the studies, eager to be presented with more stimuli, to show that he understood. The timing was amazing, as we learned that not only is Nathan very smart, but that he is very curious and desperately WANTS to learn. So at the very least, this program will keep him physically and intellectually stimulated. At the most, maybe we will have an army crawling baby soon!

We are gathering all of our materials for the program and will be starting on Monday.

I will post videos of each part of the session so everyone can see!

Sorry for such a long post, but I thought other parents of kids with special needs would benefit from the level of details.

And finally, here’s a quick pic for ya:

HOPE

I guess the best words to describe our trip are GRATITUDE and HOPE.

Gratitude to have the opportunity to share our lives with the most amazing little person in the world. He was such a joy to be with, every minute of every day for 2 weeks. We couldn’t help but to be happy – his joy is infectious. Gratitude to the wonderful people that hosted us in their homes, drove to meet us in different cities, met with us at crazy times of the night and day in all these different places. We feel so blessed to have such wonderful friends in so many places. We feel grateful to have meet such intelligent, compassionate people willing to give us support and advice in our journey towards giving our son as many opportunities as possible.

We’ve returned with a sense of overflowing hope. We feel that we are gathering more and more tools in our quest to help Nathan gain as many functional skills as possible.

After New York, we went to North Carolina and spent time with our friends the Benners.

We also went to see the Arnold’s and spent some time with them remembering Cayden. They are such a lovely family and we were just so sorry to have met them under such circumstances.

After North Carolina we went to Dallas. We met with our wonderful friends Amber, Brandon, and the rest of the Pollard gang. It was so great to meet them and to share a couple of days and a lot of experiences. We had lots of fun.

We also met up with Tracie’s family, another child that has holoprosencephaly. We really loved meeting with their family and being inspired by them.

We also met briefly with our good friend Heather

After Dallas, we went to Austin just for a day. Sorry, no photos of Austin.

Finally, we went to Portland for our appointment at the Reach Institute. I will make a whole post about that as there is so much to say.

It was a lovely vacation and we had a great time!

We have a ton of photos up, please view them on the PHOTOS page!

New York & Neurocognitive Assesment

We made it to New York in excellent shape. Nathan slept through the entire plane ride and woke up when we landed. He was ready to go when we landed so it was perfect that we had to take the train and walk around New York City. We had a wonderful weekend walking around the city, we didnt’ go anywhere in particular, just walked and walked and allowed Nathan to look at everything. He had a blast. I call him my “Endless Enjoyment”, as he is so much fun to be with. He’s just always delighting about anything and everything and will throw his head back and laugh out loud at the most random things, which make Owen and I crack up too. We’ve been really really enjoying ourselves.

Today was Nate’s first day of his neurocognitive assesment. It went really well. They did several tests. First they had him look at objects and determined how he reacted for them. They tested him for object permanence, to see if he could follow hidden objects, word and object recognition, and other things. They used eye gaze to determine if he understand what he was being asked. He did really well.

After that, he was in a room and they had auditory and visual stimuli coming at him from two sides. They then measured his response to that with a computer device.

Next, they did an EEG. They are going to use the data from the EEG to determine how quickly he responded to auditori stimuli, and they are going to use the data to try and impose the reactions on his MRI, so we will know exactly what part of his brain is lighting up for different types of stimuli.

It was a really full day but he performed like a champ. He attended to everything and was very good at focusing his attention.

We also talked a little bit with the people from the study and learned some interesting things. They talked to us about early brain development and plasticity, and encouraged us to stimulate him as much as possible in these early years, as it’s the best time to expose him to as much as possible. They said that the more we stimulate and expose him to different things, the more the brain will adapt and other parts of the brain may be able to compensate for the malformed areas. Dr. Benash was very impressed with his attention, and said that it’s a great opportunity for us to stimulate him as much as possible, if he can focus for extended periods of time, we can stimulate him and he will pay attention, so he will have the opportunity to learn many new things. She encouraged us to make sure he gets floor time, as he’s not getting much floor time and she said it’s essential for his development.

We are really happy that we had the opportunity to come.

Tommorrow they will do more testing, and I will post about that.

In the meantime, there are a ton of pictures here:

Here

Prayer Request

We were devastated with the news that Cayden, a beautiful child that had Holoprosencephaly, died this weekend. When his parents went to his room in the morning, he had passed away in his sleep.

We are so very sad for the family. We were going to meet Cayden this week in North Carolina. Instead we are going to his funeral.

Please can you pray for Cayden’s family, I can’t even imagine how hard this must be for them.

Thank you.