Thursday, November 10, 2011

Gtube Guards - A mothers labor of love. (Original Post @ Rebecca's Whims)

 What are Gtube guards? They are a fabric barrier between the tender skin of a tummy and the plastic parts of a Mickey Gtube Button.

Henry, my son had to have a Gtube to sustain his caloric needs. Due to muscle tone and an inability to swallow consistently, he was unable to nourish himself through oral feeding.

After the surgery, Henry had many complications, including an overgrowth of granulated tissue. Granulated tissue is the bodies response to an open wound. The body tries to create scar tissue to close and strengthen the site where the tube is. A lot of kids have issues with this. The tissue accumulates and then has to be burned off with silver nitrate. It all involves pain and discomfort. Our GI doctor suggested we try spilt gauze to help protect the sensitive skin. Henry developed an allergy to the medical tape the secured the  gauze.

I felt like I needed to come up with an alternative. I spent several months experimenting with different styles, and have now come up with a design that i am quite proud of. These little guards are time consuming and require an immense amount of effort to make, but Henry's granulated tissue is gone. His skin is completely healed. I offer them in my Etsy shop and am hoping to get the word out to other websites and establishments that work with people that have feeding tubes.

How are they made? I use two layers of flannel and a layer of cotton batting. I use a small bit of velcro so they can be secured around the tube. They are securely sewn. They are sewn 'wrong side out' and then again 'right side out'. The 'right side out' stitching ensures the shape, even after many many washes. Henry has been using the same guards for months now, and they are still as effective as the first time.

These gtube guards are labor intensive, but they are a work of love. My daughter and I love spending a weekend constructing them. "It's like we get to be helpful for people we'll never meet." Anastasia is 14, and is always looking for ways to help families that live with similar struggles as ours.

Saturday, October 29, 2011

Recovery, finally!

So, it's been 10months since Henry's Gtube surgery. He's finally adjusted! He's able to take bolus feeds during the day, and continuous feeds at night.
We've also started giving him a muscle relaxer to help with his muscle tone issues. The side effect has been that his anxiety level has been reduced too! He doesn't startle at loud sounds like a truck driving by, he is easier to stretch while doing PT, and he hasn't had 4hr crying jag since starting the medication! He's also been sleeping through the night!!

Things aren't perfect, but they are getting better. Henry has had to have two adjustments in the last 5mo because he's started to grow. He's wears prescription diapers - depressing to think that he may never be 'potty trained' - but we are thankful that insurance covers the cost.
His vision has improved. He tracks a little better, and initiates eye contact. He even played 'peek-a-boo' with his vision therapist!
His strength has improved too. As his gtube site healed, and we discovered a good pattern for the gtube guards, his soreness went away. He was able to apply his core muscles to movement and expression.
When a person doesn't have a vocabulary for communication, and muscle tone is unpredictable, they come up with all sorts of ways of getting their point across. He likes to bend in half and make a loud roaring sound to get our attention.

A year ago, things looked miserable. I had so little hope. But as time passes I become accustom to Henry's abilities and have adjusted my vision for his future. There is a lot of planning involved in his care, and keeping organized is absolutely necessary. I have been able to accomplish more in the last year, than I thought possible in a million! Noah and I are proud, stressed out parents with a vision for our family. With careful planning, and hard work, we'll make our dreams come true and help our children find the way to theirs!

Saturday, July 16, 2011

Summer in the City

We're better at navigating the wheel chair, but still only made it to one of Zane's baseball games. Henry hasn't been vomiting, until tonight. We've had a six week reprieve of puke. But because he's developed a cold, mucus is triggering his gag reflex, and up comes the formula...

We met with Dr. Wadie last week. He's going to be moving to North Carolina in September. A great place - really. A lot like Eugene, but with more people, bigger cities and a more diverse population - not just discussion of diversity. But that leaves Eugene without a Peds GI doc. He's going to give us some options, when we see him for the last time in September. But if Henry needs surgery to repair the Nissen or needs the Gtube altered or needs a Jtube - we'll have to go to Portland. Doernbeckers Children's Hospital - were Henry had his hypospadias surgery in May last year. 

I've been so tired, and worn out, from all the care that Henry needs that I have found myself fantasizing about how he was born. Apparently I've cycled back to the bargaining part of grief. "If only I had known" How the hell could I have known that he was cut off from oxygen. I had never even heard of a blood clot in an umbilical cord. I'd like the grief to end already. Jesus. I may be on this ride forever! 

But, life goes on, and we begin to adjust. We are moving on in a hundred different ways, and watching Henry stay the same. We watch Lewis grow, and spin into an amazing physical  being, readying himself for intellectual challenges and emotional maturing - while we watch Henry stare at the lights, and make the same "goo goo" sounds. It's probably one of the saddest things I've ever witnessed. 

 Lewis understands that Henry is part of the family. He tries to play with him sometimes. But Anastasia and Zane are so quick to entertain Lew that he seems to only go to Henry as a last resort. And eventually, we'll have to explain why Henry doesn't eat. Why he has tubes in his stomach, why he has to have a wheelchair, why he goes to a special school. Or maybe, he'll just absorb it all and take it all in stride.

We are getting better at being a family. We are healing from the grief. We are trying to move on, while standing still. We are better, together. We will always have a sad aura, but we understand other's now, in a different and profound way. I would trade knowing what I know for a little bit of peace, but if I have to know these things, I'm grateful to be able to put it to use. 

Friday, May 27, 2011

Gtube Guards

These guards fit perfectly between skin and button. It absorbs quickly and helps prevent granulated tissue.

Each guard is made with flannel and cotton batting. A total of three absorbent and soft layers.

Velcro is sewn in to secure the guard around your  button.

Here is an example of a double stack for max absorbency.

Want a sample? Email for details.

Wednesday, May 18, 2011


Elecare is like regular formula, but is more broken down - for easier absorbsion.

The pump came with a back pack to house the bag and pump, but we have to turn it off so often that it didn't work. We use an 's' hook to secure the formula in a basket that holds everything. We can easily take the basket in the car too, and it stores wellin the wheelchair backpack.

The bag is attached to the pump.

The rate and dose are set for this 'feeding'.

All the essentials.

Prime the tube. Other wise you'll pump air into the kiddos belly!

We use the 'Y' port for easier medicine dosing.

Connected to the bag tube, with clamp closed.

Clamp open.

We use thick paper towels rather than gauze. Viva brand is soft and clothlike. It's less expensive and stands up better .

The tube is in and locked. Line up the two black dots to unlock and  release.

The pump is on and running.

Henry's tired of being messed with.

He really wants to cuddle with his breakfast!

Saturday, May 14, 2011

A day in the life...

Henry was up four times last night. A typical night. Sometimes he's up more, sometimes he sleeps through the night, but I can usually expect to be up with him at least twice.
He woke because of air in his stomach. I vented, and vented, but he still vomited. It's a difficult thing, to assist vomiting in a child with no understanding of their body. He retches, and sounds so weak. It's like a reflex. His body just does it. But then he gets upset because it hurts, and fights my attempts to minimize the mess... so, it's unpleasant and messy...

I won't say that I have gotten used to the vomiting. But I will admit that I have gotten better at managing it. I almost always have a stack of receiving blankets to catch and absorb whatever he throws up. The receiving blankets are usually warm, fresh out of the dryer... Thankfully the washing machine just needed a break and a visit from the repair man. It's been working well since he tightened a few bolts and informed us that it would be too expensive to replace the parts that are wearing out. A new machine is in the future...

We have been doing research, networking and attempting to learn more about Henry's Gtube. We're learning a bunch about how other parents deal with the issues of vomiting and formula and new products.

He heard about the Farrel Valve bag from a Facebook Page. Feeding Tube Awareness is full of moms and dads that have been doing this gtube thing for longer than we have. They have also been using other feeding tubes.

A Jtube could be in Henry's future if we aren't able to minimize the vomiting. If we can't get the Farrel Valve oked through the insurance, we have to look at other options for getting him what he needs. Hid GI doctor hasn't used the Valve yet, and was hoping to get it oked and have us give him feedback so that he can determin if other patients might benefit. My hope is that the insurance sees that we need it, but if they fail to provide for Henry, we may be able to get our Doctor to contact the manufaturer for 'samples'... But that's all conjecture. The Jtube is another surgery that connects another button to the small intestine. His formula would bypass his stomach all together. He would still need the Gtube, to administer medication and water and for venting.

So, we are slowly adjusting, learning new techniques and attempting to make Henry as comfortable as possible. We will have issues with the van, diapering and the need for a hospital bed in the next year, but hopefully, we will be connected to the right people, and institutions that can point us in the right direction.

Saturday, April 23, 2011


We are finally starting to wrestle this Gtube to the ground. Finally, we have the right formula. Henry is tolerating his feeds, but still vomiting. We are narrowing down the causes of his nausea. I believe he has a hard time with transitions... So he throws up when we move him. He may benefit from an anti nausea medication, but I hate to have to give him more medication. He also throws up when he is almost finished with a full dose of formula. His stomach will adjust. It looks like we may just need to wait a little longer.

Let's hope Henry's allergies don't cause too much trouble!

Saturday, April 2, 2011

Putting the heat on Henry's Heroes Fundraiser!

Henry's Heroes Facebook page is hosting a fundraiser! We're trying to raise money to buy a van or alter the currently family van so that Henry's wheelchair can be used with more efficiency.

Here's how it works:
Kind folks donate items.
Kind folks purchase these donated items.

What's been donated?
Handmade items
Dolls Cloths

What can be donated?

Are you a crafter? Are you a collector wishing to make some space for new purchases? Do you scrapbook? Do you have a pile of crocheted or knitted hats and scarves that have no home? Do you have a box full of hand stamped cards that have no where to live? Consider give these items a home on Henry's Heroes Fundraiser!

Are you a business owner? Does your company offer services? Consider donating a certificate for services to Henry's Heroes Fundraiser!

Do you have an Etsy shop? Do you have a website? Consider donating an example of your goods and wears to Henry's Heroes.

We link all items (unless requested otherwise) back to the original donor. Your website and Facebook page with be visited by folks interested in your goods and services!


Want to donate send an email ( with a picture of the item, the suggested retail value, and where the item ships from.

Thursday, March 3, 2011

March is Cerebral Palsy Awareness Month

Andrew Brereton started a rehabilitation facility for families affected by CP and other neurological disorders. He's in England, so We can't benefit from hands on treatment, but we do find his information and resources useful. We are grateful for the time and dedication he's given to us during periods of stress and uncertainty. Check out his site - Snowdrop and find him on Facebook

"As March is cerebral palsy awareness month, Snowdrop is republishing all its blog posts on the subject to help raise awareness.
There are many varied and confusing definitions of cerebral palsy, many of which do not mention the brain. They speak of disorders of movement and posture, they speak of the body musculature, I have even seen one which refers to cerebral palsy as a disease! The medical world seems to excel at generating these over technical and jargon filled, complex definitions, when the actual definition is very simple. Cerebral palsy is a type of brain injury. It is actually a group of symptoms which commonly occur in a particular pattern of brain injury. When those symptoms come together, we call it cerebral palsy.

Now, just to add further refinement to that statement, there are four patterns of brain injury, which cause four types of cerebral palsy. Those three types are 'spastic cerebral palsy,' 'athetoid cerebral palsy,' 'ataxic cerebral palsy,' and 'mixed cerebral palsy.

Spastic Cerebral Palsy.

The word 'spastic' means 'stiff' and so children who have spastic cerebral palsy have a tendency to have stiff muscles. That stiffness may show itself only in one limb, two limbs. Three limbs or four. There are various names for the different combinations of limbs which are affected in all types. I will not highlight these at the end of this section.

Spastic cerebral palsy is usually caused by injury to the cortex, especially the motor cortex and to a bundle of nerve fibres called the corticospinal tract. Obviously, spasticity is very uncomfortable and has negative consequences for the child's development, depending upon how many limbs are involved and it's severity.

Athetoid Cerebral Palsy.

This type of cerebral palsy is caused by injury to a structure below the cortex called the 'basal ganglia.' The basal ganglia plays a role in motor function, cognitive processes, emotional processes and our ability to learn. It also acts as a 'braking' mechanism on the thalamus, a part of the brain which mediates our sensory experiences. So, without this inhibitory role, one can imagine a thalamus in effect operating without its 'braking system' which might produce many of the sensory distortions we see in some children who have cerebral palsy. It also acts as a 'braking system' for movement, which enables us for instance, to sit still. In order to sit still a 'brake' has to be placed on all other movements. Consequently injury at this level hampers the 'braking system' and we see children who cannot sit still and are in constant movement and children whose sensory perception is distorted. Injury to this part of the brain also exhibits itself in many children by retention of the primitive postural reflexes, as it is the role of the basal ganglia to suppress these in order to enable the child to move.
Children with basal ganglia injury are also more likely to have hypotonia, (floppy muscle tone) and persistently impaired balance and ambulation performance.

Ataxic Cerebral Palsy.

Children who have this type of cerebral palsy are usually injured in a structure right at the back of the brain called the 'cerebellum.' The word 'cerebellum' actually means 'little brain' and it is not without justification, as at first sight it does look like a smaller version of the brain. It is located behind the brainstem and it forms massive connections with this structure and with the cerebral cortex. It is the only structure within the brain which is not fully formed at birth, taking a further two years to develop to it's full complement of neurons.
The proper functioning of the cerebellum ensures that any movements we make are smooth and well coordinated. It seems that the motor cortex supplies commands to the body musculature, which are then refined by the cerebellum to ensure smooth coordination. Feedback on the success of the movement is then supplied from the cerebellum back to the motor cortex where the original movement command can be refined if the movement has been unsuccessful.

One might imagine then that an injury to the cerebellum will interfere with these functions. Movement can become slow and uncoordinated, the child may display problems with balance and equilibrium, the child might experience an 'intention tremor' - (a tremor which is made worse when the child tries to move). Injury to this part of the brain causes 'Ataxia' – this is where the muscle tone is hypotonic (floppy).

Higher cognitive functions, like language and visual processing, have long been thought to reside primarily in the brain's cortex, however recent research involving premature infants is documenting an important role for the cerebellum -- previously thought to be principally involved in motor coordination and shows that cerebellar injury can have far-reaching developmental consequences. This work also demonstrates that the cortex and cerebellum are tightly interconnected. Sophisticated MRI imaging of 74 pre-term infants' brains revealed that when there was injury to the cortex, the cerebellum failed to grow to a normal size. This means that our children with spastic cerebral palsy will usually also experience some of the difficulties associated with injury to the cerebellum.

When the injury to the cortex was confined to one side, it was the opposite cerebellar hemisphere that failed to grow normally. The reverse was also true: when injury occurred in one cerebellar hemisphere, the opposite cerebral hemisphere was smaller than normal. So, there seems to be an important developmental link between the cortex and the cerebellum, - it seems that the two structures modulate each others growth and development. So it appears that the way the brain forms connections between structures may be as important as a direct injury to a brain structure itself.

The cerebellum has also been implicated in the development of some types of literacy problems, including dyslexia.

Mixed Cerebral Palsy.

This quite simply is where several brain structures are injured, producing a mixture of symptoms of all three of the previous types mentioned.

Cerebral palsy is not limited to injury to the brain structures I have mentioned here, it is just that in the overwhelming majority of cases there is injury to one or more of these structures. An injury to one or more additional brain structures or nerve pathways can also add to the mix of symptoms, which is why no two children with cerebral palsy are exactly the same. They may have some shared symptoms, but they will not be totally alike.

What is the difference between hemiplegia, diplegia, quadriplegia, etc?

These terms are quite simply a reference to how many limbs are affected.

Quadriplegia indicates that all four limbs are affected.

Diplegia indicates that the legs are affected.

Hemiplegia indicates that one arm and leg on the same side of the body are affected.

Double Hemiplegia is a term which is used when all four limbs are affected, but with different features on the right and left sides.

Alternatively, your doctor might use the term, hemiparesis instead of hemiplegia, and quadriparesis instead of quadriplegia. 'plegia' indicates a form of paralysis or difficulty in moving the affected limbs, whereas the term 'paresis' indicates a weakness in the affected limbs.

What problems can cerebral palsy produce in a child?

A child with cerebral palsy can experience difficulties in one, several or all areas of development, to a greater or lesser degree, depending upon the nature and severity of the brain injury. An injury can be so mild as to merely slow down development a little in just one area, or can be so severe as to completely stop development in all areas, rendering the child totally dependent in every way for every aspect of his care. Let's do a quick A – Z tour of the kind of problems you could be facing.  This is by no means an exhaustive list, just a review of the major difficulties.

Anxiety. - Some children with cerebral palsy suffer from anxiety. This can be due to the discomfort produced by stiff musculature, or can have other neurological causes such as the overproduction of norepinephrine in the brain, leaving the child on a hyper-anxiety inducing 'high.' There are techniques, which Snowdrop employs to relieve this situation, but in the most severe cases intervention can be necessary with anti – anxiety medications.

Breathing. - The respiratory rate of a newborn baby is between 40 – 70 breaths per minute, but by the time he is ready for pre-school at four years of age this has dropped to 25 breaths per minute. By the time a child is ready for secondary school, this has again dropped to approximately 16 breaths per minute and by adulthood the rate is around 12 per minute. In many children who have cerebral palsy this developmental pathway is either slowed or stopped, leaving for example a four year old child, who should have a rate of 25 breaths per minute, with a rate of 50 breaths per minute. As the breathing rate of a newborn is also shallow, this can mean that the oxygen levels in the brain are more difficult to maintain, exacerbating other problems such as epilepsy. It also makes the coordination of swallowing, chewing and breathing more difficult.

Constipation. - This is a big problem in many children who suffer spastic cerebral palsy, but to a lesser extent in the other types too. It is produced by lack of mobility, muscular stiffness, lack of muscular strength and bad co-ordination. Fortunately there are medications such as lactulose, senna and sodium picosulfate, which can ease the problem. On a more natural note, there is also Magnesium Oxide which can have a beneficial effect. Even so, many children still have have regular enemas. It is important to try to control this problem as constipation exacerbates so many more of the child's problems, such as muscle tone, anxiety and epilepsy.

Digestion. - The digestive system of the child with cerebral palsy might also be compromised, with the child having poor absorption of nutrients, or having trouble in keeping food down, through excessive vomiting.

Epilepsy – This is more prevalent in spastic cerebral palsy, but does occur to a lesser frequency in all types. Epilepsy can be a big problem. I have seen children who are taking the most powerful medication cocktails you could imagine and still they have seizure after seizure. Often it is well controlled by medication, but sometimes depending upon the severity of the brain injury, it is more problematic. Epilepsy is simply the propensity of brain cells to misfire. Sometimes this sets of a chain reaction causing other cells to misfire and we then see the child having a seizure. Depending upon the extent of that chain reaction, the child may have a mild seizure such as an 'absence' where he simply 'fazes out' and stares into space for a few seconds, or he might experience a more violent, generalised seizure where he loses consciousness and his body rhythmically shakes.

Usually there is no danger from the fit itself, - even in the most violent looking seizures, the child will regain consciousness within a few minutes, the only danger being that when the fit begins, he might lose consciousness, fall and hurt himself. Very rarely however, some children will experience repeated seizures from which they cannot be roused, this is called 'status epilepticus' and is a situation where medical help should be sought without delay. For a more detailed description of different types of epilepsy, go to my book 'Brain Injured Children. - Tapping the Potential Within.'

Feeding and drinking. - These are two more areas which are affected by breathing. It is sometimes difficult for the child with brain injuries to co-ordinate swallowing, chewing and breathing, - something we do unconsciously and which we take for granted. This can result in the child aspirating (breathing in) liquid and food with the consequent risk of infection such as pneumonia. Other problems include the fact that the child might not have the required muscular co-ordination to chew, or might have so strong a suckling reflex that instead of chewing, he suckles his food. Actually getting some children with severe cerebral palsy to take solid food at all can be a difficult task. Sometimes, as a result of all these difficulties a doctor might recommend that a naso-gastric tube be fitted, or that the child has an operation called a gastrostomy, through which they are fed.

Homeostasis. - Some children with cerebral palsy who have injuries to a part of the brain called the 'hypothalamus,' or connections to and from it have trouble with several aspects of maintaining their equilibrium. This may display itself as a lack of a drive for hunger, thirst, etc, or too much of a drive for these. So some children might not realise they are hungry, whilst others might be incessantly so. It may also display itself as an inability to maintain body temperature, the child either becoming cold or hot easily.
Learning Difficulties. Many people assume that most children who have cerebral palsy also have learning difficulties, - this is not the case. Many children with cerebral palsy have difficulty in displaying their intelligence because of their sensory, physical, and / or communication difficulties, but that intelligence is often most certainly there! Only approximately three out of ten children with cerebral palsy have severe learning difficulties.

Orthopaedics, Orthopaedic impairment can take many forms in the person with cerebral palsy. One or more limbs can be impaired, different muscle groups in the body can be affected, there can be difficulty due to stiffness of the muscles with ligaments and tendons tightening, there can be difficulties due to low muscle tone too. Children can suffer from contractures and dislocations. There can also be problems with scoliosis of the spine. There are surgical procedures which can help to alleviate some of these difficulties, and there are also medications such as muscle relaxants. The best way of maintaining your child's body however is regular physiotherapy. The physiotherapist is so important to the child with cerebral palsy and to Snowdrop. They help to prevent the development of orthopaedic and associated problems, thereby preserving a clear developmental base upon which to build.

Salivation. - Many children with cerebral palsy produce excess amounts of saliva. This can cause big problems with choking, aspiration and infection, chewing and eating, drinking and language development. It can signal an imbalance in the autonomic nervous system, which has two branches, - the sympathetic and parasympathetic nervous systems. When the parasympathetic branch is over-active, production of saliva increases. Over salivation can also be stimulated by problems with the brain's vestibular system. There are medications which can be used to help slow down the rate of salivary production, one of the more common being 'scopolomine patches,' which are gently stuck on behind the ear.

Sensory Problems. - This is a huge problem area for many children with cerebral palsy, whose sensory perception can be dulled, distorted or amplified in one or more of the sensory modalities. Children can have a mixture of these problems in different senses, so that a child might for instance have acutely oversensitive hearing and simultaneously be undersensitive in vision. As specific sensory systems supply the information necessary for the efficient operation of motor systems, problems here can have the effect of retarding the development of mobility, hand function, language and communication and socialisation.

Let's take a brief look at this. If a child's visual development is delayed or stopped, then language development, socialisation, mobility and hand function can be affected. Mobility speaks for itself, if a child cannot see it could be dangerous to move. Language and socialisation development will be affected because the child will not be able to complete the essential developmental stages of making eye – contact, regulating mutual attention and will not be able to see the face of a communicating partner. All of which are vital precursors to the development of language and socialisation.
If a child's auditory development is affected then it is obvious that language and consequently socialisation, which in turn depends so much on language development, will also be affected. The development of spoken language is dependent upon exposure to spoken language. If tactile development is affected then mobility and hand function will also be problem areas. If you cannot feel where your body, limbs and hands are, then you will have difficulty in the conscious control of them. So we can see how important sensory development is in enabling other developmental functions to operate normally.

Sleeping, - There are two categories of children to talk about here, the first is the child who cannot sleep. The second is the child who can sleep but does not do so at the correct times. The effect is the same for the parents who have to stay awake to ensure the child's well-being. In the first category, the child has a neurological reason why he cannot sleep, - he perhaps for some reason does not produce enough serotonin, or maybe he overproduces 'noradrenaline.' In the second category it could be the child's body clock which is askew, or it might be sensory oversensitivity which is preventing him from sleeping. Ultimately this child will sleep, usually when he collapses from exhaustion.

Teeth, Dental problems can occur, especially if the child is hypersensitive to touch in his mouth, or if he produces excess saliva, or grinds his teeth.

Teeth grinding, - Apart from being like the Chinese water torture for the person having to listen to it, this can cause dental pain for the child who does it. Often, it is done when the child feels stressed and more often than not is linked to overproduction of saliva.

Can Cerebral Palsy be Treated?

The answer to this problem is an emphatic 'yes!' Snowdrop treats many children who have all types of cerebral palsy. We believe that treatment in the past has either focussed upon treating symptoms, -which is why it has failed, or it has focussed upon erroneous theories about the way in which the brain works and how children develop. Indeed, we point to plentiful evidence in the literature, which can be seen in my book, 'Brain Injured Children: Tapping the Potential Within,' which prove these systems of treatment to be failures.

We point to the fact that our system of treatment, which we call 'neuro-cognitive therapy,' is informed by the evidential findings of eminent researchers such as Vygotsky, Bruner, Rogoff, Dunn, Woods and Mercer to name but a few.

Our approach is based upon certain irrefutable facts concerning brain function, which are applied to the treatment of children's developmental difficulties. The first of these is brain plasticity. It is now unchallengeable that the brain is capable of changing its structure and functioning in response to the environment in which it finds itself. We can see this in the growth of new synaptic connections and the pruning of inefficient ones.

The question then is, what do I mean by 'environment' and how can we manipulate this variable in order to encourage the brain to respond in the way we wish?
The brain takes in information from the sensory environment, through the eyes, ears, nose, mouth and skin. It processes this information and then re-routes it to the appropriate part of the cortex for further attention, evaluation and action. When the brain is working as it should, then all of this is achieved with the maximum efficiency, without us noticing what is going on. However, as both you and I are aware, the brain does not always work as it should.
In many children with cerebral palsy, this sensory information has great difficulty in reaching the relevant part of the brain at all, or if it does, the signal has been weakened sufficiently so that processing becomes almost impossible. In other children, the sensory stimuli is passed to the cortex for processing in a distorted manner and the child is overwhelmed by the world it perceives.

These 'distortions of sensory processing' are primary problems which affect many neuro-developmental conditions, not just cerebral palsy. What I try to do is to manipulate the sensory environment to which the child is exposed in order to encourage the regions of the brain which are responsible for processing the sensory stimuli, (the sensory attentional filter of the brain, - the ascending reticular activating system, the thalamus and the limbic areas), to re-tune and to process information more normally. I do this sometimes by providing an adapted sensory environment designed to dampen the incoming sensory stimuli (in cases where children are hypersensitive) and sometimes by designing activities intended to enrich sensory experience. In this way, because as I have said, we know as fact that the brain grows new synapses and prunes disused ones, we can influence not only brain function, but it's development.
Another aspect of my approach is aimed at any learning difficulties the child might have and is informed by research from Vygotskian psychology. Recent research has provided ample evidence concerning how children learn. (unfortunately, often children do not learn in the manner by which schools teach)

As I have already pointed out, the research findings which inform my work in this field are all provided by respected, mainstream psychologists so you know in advance that I am not operating some 'fly by night' fanciful theory on brain plasticity and learning; - everything I do has an evidential basis.

Basically, utilising Vygotky's concept of the 'zone of proximal development,' I look at the child's current developmental level in terms of his / her cognitive development and reinforce this. I then look at the next stage of development for the child (his proximal development) and in recognition that learning is a social activity, provide support to enable him to attain that ability (this support is Bruner's concept of 'Scaffolding.'). This may also entail breaking the developmental task down into smaller, simpler sub-components thus enabling the child to succeed. As the child improves his functioning at the desired task, the scaffolding (support) is gradually removed until he is performing the desired task automatically. This is not just the way in which children learn, - this is the way we all learn.

What does a Snowdrop programme look like?

This would depend upon the specific difficulties faced by a child and how much time the family could practicably spend on it. It might consist of as little as thirty minutes of structured stimulation per day, up to two hours per day. The programme consists of a series of activities, each lasting a few minutes, which are designed to stimulate development in the seven major areas, visual, auditory, tactile, language, mobility and social development, in addition to the seventh, - hand function. What the programme is designed to do is to ameliorate the symptoms of developmental delay in all these areas of development.

Where do I go from here? 

After many years as a parent of a profoundly brain-injured child, almost as many years in academic research and working in schools with children who have special educational needs, I decided the time had arrived to fulfil a long held ambition. Having travelled internationally to clinics, both as a parent and as a researcher, I have become aware of just how little of the vast amount of knowledge possessed by the discipline of psychology is being applied to the treatment of children with cerebral palsy.

I have personal experience and knowledge of the serious consequences for the family, which the presence of a child with cerebral palsy can bring, not least of all the problem of stress, which family members bear. As I have previously stated, a child with brain-injuries, with his myriad of associated difficulties, is likely to create tired, stressed parents, - understandably so! This needs to be taken into account when dealing with the family and in this sense, we are not merely treating the brain-injury, nor merely the child; - We are treating the whole family and if we are to have a significant impact upon the problems presented by cerebral palsy and other brain-injuries, we must surely do so!

With these thoughts in mind, and having worked alongside parents and brain-injured children for many years, I have established a child development consultancy called ‘Snowdrop.’ Snowdrop is already successfully treating many children (and adults) both in the UK and in many other countries.

My personal crusade is to ensure that Snowdrop remains ‘research friendly’ and eclectic. By this, I mean we should not develop a set philosophy or rationale, which will effect our methodology. – Down that road lies academic egoism and inflexibility, which I have witnessed at so many other institutions and which would lead to stagnation. We should always look to research and to evidence to provide our treatment methods and not be afraid to change.

It is my hope that this short text has been informative and that most of all it has given parents some good information about cerebral palsy and also some hope that their children can make progress." Andrew Brereton /  Snowdrop

Wednesday, February 23, 2011

Heart in your hand.

Little Henry. Screamed for nearly 36 hours. He took a 3 hour break at about 3am. Noah called the GI doc, to find out if we could do something. We're venting him every hour, sometimes more. He's getting teeth, so he sucks air, swallows it and isn't able to burp. We are exhausted, and needed some support from Henry's medical professionals... Noah called at 9am. The nurse called back when she got on shift at 10:30 - "do you think your GP could handle Henry's GTube issues?" By 5pm we had been passed around to three doctors, and two prescription have been called in to the pharmacy. Dr. Wadie is on Emergency Medical Leave. His ex-partner flat refused to see Henry. His other ex-partner spoke to Noah, said to give Henry two medications that are unrelated to our issues. When Noah asked who we call in case something like this came up again, she said "Well I guess you could call me and I could see if I could help." Thanks.

When we needed to get a diagnosis for Henry's vision, we saw Dr. Polanski. Once at 5mo. "Come back in 3 months and we'll do some tests." We went back. "I'm going to send you to Portland at Casey Eye Institute. They have better equipment and a peds department." Dr. Carr in Portland said Henry had a 'pale' retina, but said nothing about his ability to see...
This February we were invited to a clinic, rather than do the 5 hour drive back to Casey Eye Institute. We finally have a clear understanding of how well Henry sees.
I could go on... seriously. But I won't.

We felt unimportant. We felt like Henry's health and well being are compromised. The GI doctor that Noah eventually spoke with offered no solutions, and said "Welcome to parenthood!" before she hung up. What? People say dumb stuff all the time... "Does he complain about a stomach ache?" No, he can't talk. He doesn't tell us anything.

He's quiet now.

He's 'playing' in his wheelchair.

It's snowing... We'll take a walk in it tomorrow, if the sky clears.

Hope... I'm hoping for some clarity. Peace. And I'm hoping that we can find a way to get some consistent and helpful support from the medical establishment. 

Monday, February 21, 2011

Pillow Talk

We may have a concert benefit for Henry's Heroes! I may have an opportunity to speak. I was up four times with the boys, but it was ok. Henry took a full 'dose' of formula yesterday. After venting Henry, I laid in my bed, with the pillow in a weird angle, and tried to sleep. I'm a ruminater at night. I am unskilled at shutting my brain off... but occasionally, I write a wonderful blog, in my head...

We are under the misguided impression that details, are our business. We have sat on our couches and in our arm chairs watching other peoples lives on the television, on youtube and through facebook status updates. Shame on us.

I see the results everytime we take Henry out. "What's wrong with him?" is not said every time, but the stare is unbelievably clear.
Let me say, that it is no one's business. So, as you wander through your grocery store collecting the things on your list, mind your own business. I don't saw this to be harsh. I say this because, while a little boy may be in a wheelchair, or a little girl my be on braces or a baby may be crying, the only thing we need to know about that child, is that it is loved. It is loved by many people. Every time we say something dumb, we may not hurt the unaware child, but we do hurt family and friends that love him or her. Consider that, when you leave the store, you will probably forget about that child... but the loved ones won't forget what you said, or the look on your face as your gaze lingered too long on their child.

Families raising a child with a disability want to be and do normal things. We want to go to the market and collect our breakfast, dinner and lightbulbs. We want to be able to mingle and smile with strangers. We don't want to be defensive. We want to conduct our business and get on with our day. We want the same things that everyone else does.

So, as you go through your day, and inevitably encounter someone that is different - smile. Smile at a mom pushing a wheelchair. Smile at a sister carrying a wiggly baby. Smile at a dad as he shows the oranges to his nearly blind son. Know, that they are just like you, with hopes and dreams for their loved ones.
Know that sadness and grief are a huge part of their life. Know that hard work and determination are the only things that keep them from falling apart. Know, that they are a part of your village, and deserve kindness... and that they love their children.
The rest are just details that don't matter.

Sunday, February 13, 2011

Happy Birthday Henry!

We love you!

You inspire us.

I hope that you know how much we love you, and I hope that we can find new ways of communicating our feelings to you and for you! 

May the next year be full of discovery, healing and progress!

Thursday, February 10, 2011

New treatments and therapies.

We met with Henry's speech therapist last week. We're going to table the idea of using the PODS until we're clear about his vision. Instead, we'll use his hands, left is yes and right is no. We'll ask him a question and look for that postive response that he gives with a smile, and teach him to move his left hand in response as well. His right hand is for a negative response.
"Henry, do you want to watch videos with daddy?" Henry smiles - we tap his left hand on to the palm of ours and say "Yes, you want to watch videos with daddy."
Our hope is that he'll eventually be able to use switches and some recorded options to tell us what he needs.

We met with Henry's OT this week. We're starting to slowly, 1ml at a time, introduce oral feedings. We'll see how well he tolerates it. So far, he's had a couple of tastes of Odwalla Mango.

We also went to meet Dafni at the prosthetics clinic this week. Henry finally got his braces. He needs to wear them for ten minutes at a time, twice a day for a few days, and then we build up to a half hour and then to an hour twice a day. They are meant to be used with the stander.
Jodi came for the stander this week, because another family wanted to try it out. So we may end up needing to share it with another family until ECCares can/will order another. I looked up the cost of a stander... it's staggering.
Ours is lime green.

Next week Henry meets with an eye doctor. We're hoping for some insight into his vision disabilities. We'd like a confirmation of CVI so that we can start him on a treatment plan for that too.
We see Wadie next week for a follow up on the Gtube, too. We also have an appointment for Lewis and Anastasia. Next week is going to be busy, and we need to fit a birthday party in there somewhere!

Physical therapy with Dafni starts back up in a week and half. I'm not sure how well it'll go. He's been so stressed, recovering from the Gtube surgery.

We have a meeting scheduled at the feeding clinic in March. We'll meet with a nutritionist and another OT. I'm certain that we'll only take instruction from the nutritionist...

So, as we move into the third year of Henry's life, we'll have
2 Physical therapists
and educational specialist
a neurologist
a vision specialist
an occupational therapist
an orthodics doctor
a speech therapist
and a General Practitioner...

We are lucky to have so many skilled people to assist Henry and his growth... but we need to meet some regular folk!  

Saturday, January 29, 2011


It's been a few weeks since I updated! Thanks to everyone for their thoughts and prayers and wishes. We haven't felt alone on this journey.
Things have been up and down. We all had a cold. Henry doesn't manage colds very well. It exaggerates his gag reflex, and makes feeding difficult.
We met with a PT, an OT and a SP last week. We're putting some plans together for goals on oral feeding and in his speech therapy we have decided to start getting Henry ready for a couple of switches. We use his right hand for yes and his left hand for no. We tap his hand on the correct side to indicate a positive or negative response. Later, he'll have a switch with several options that he can click through to communicate with. It's exciting, and I'm trying to stay in the moment. I don't want to be disappointed later.
Henry's feedings are getting better. But earlier this week, he slept for two days, barely waking to smile and snuggle his stuffed puppy. I feel like he's been gone for a month now. I miss him!

Anastasia is gearing up for the Book Sale. All proceedes will be sent to the United Cerebral Palsy of Oregon. She's got a great venue for free, and an interview on a local radio station. But she NEEDS MORE BOOKS! We've been collecting for weeks, but need to boost our efforts in the last weeks!

Next week is a slow one for appointments - just the fitting for his braces- Hopefully! The following week, Henry's birthday, we meet with an Ot, the Pt, his Education Specialist, his Gi doc - we go to a Low Vision Clinic for his official vision impairment diagnosis, and we meet with a nutritionist to discuss his tube feeds and the introduction of solids.

Now, what to do for his birthday. I want to have a birthday party for him. I know he won't understand that it's a special day, but the rest of us do. What should we do? No one is eating sugar, so cake is out. We're not eating pizza, so that's out. Henry doesn't have a favorite meal, so I can't make that for him. How do we celebrate his special day? It falls on Valentines Day. I wonder if we should have a theme? Hearts and love seem appropriate. Spell out Happy Birthday with cut out hearts, and decorate with paper heart streamers!

Monday, January 10, 2011

One tough cookie.

We slept well last night. Lew woke only once. Henry woke at 4:20am. I rocked him back to sleep by 5:30 but then it was morning.
Our day got off to a slow start because the doors to the van were frozen shut. Anastasia and Zane missed their orchestra class and were late for school.

Henry made it to his follow up appointment with Dr. Wadie seven minutes late. It was a quick check up. His site is healing nicely, and we trouble shot some of the retching issues. We need to slow the feeds, and keep at it.
He'll adjust. His stomach will stretch. He's lost 1/3 of the capacity that he had before, so tolerating even half the amount of before causes his stomach to distend, creating gas and the need to vomit. Retching threatens to pull the stitches and undo the nissen fundaplication that is responsible for keep his food in him. The Gtube cause reflux, which causes retching and the cycle begins... We also need to start putting gauze between the gtube and his skin because it's causing granulation tissue, which just means bumpy scar tissue and little bitty sores.

So, we're off on another adventure to discover how much we can handle. I'd rather face the long lines of a ridiculously short roller coaster, but the universe had other plans...

Sunday, January 2, 2011

One week down...

And, we're down.

We've been doing this g-tube feeding now, for a week. It's difficult. It's painful. It's discouraging.

We are supposed to do 4 bolus's and a 12hr feed over night. The bolus's need to be 120ml over an hour. However, if he gags and retches, we are supposed to pause the pump, and turn him on his side. We check to see if there is any gas build up. We comfort him, and then continue on with the feed. Sometimes, by the time we are finished with a feed, it's time to start the next one.
And, if his tummy gets too full, too fast, he not only gets a lot of gas, but then has diarrhea. And with Diarrhea comes diaper rash.
Because Henry doesn't have much range of motion with his arms... when he cries, he moves his arms and fists up and down on his belly... almost dislodging his button. I have it taped down so that he can't accidentally rip it out.

He has been happier the last two days. But he's also been low on his tube feeds. About 200ml short.

I'm trying to stay positive. I'm trying to keep my attitude in check.

I feel like we're all trapped in this cycle of feedings. By the time we finish one, it's time to start another. What if I need to go tot the supermarket? What about all of Henry's appointments? How in the world are we going to get him all of the nourishment that he needs, if the g-tube doesn't work?

He's sleeping now. He's had a good day.
I will be grateful for that. And tomorrow, we'll try to get more calories into him, without pushing it too hard.

I will 'take it easy' and try to find some time and energy to play games with the big kids, before winter break finally ends.