Broken Femur!

Rebekah has been doing great physically and we had her doing sit to stand with support and standing against a couch with minimal support. My dreams of her walking one day are getting closer and closer!  We've been coordinating with her therapists to maximize efforts to train her body towards this goal - weight shifting, stomping one foot at a time, and learning to use both sides independently. Things were looking good until...

Rebekah with a broken femur, in a half-spica cast (over one leg only and around the hips).

We never thought Rebekah had an issue with her bones! Yet here we are with a broken femur derived from her daily regiment of calf and hamstring stretches. And having a broken femur is not taken lightly. Her break, which occurred about 1/4 of the way from the top of the femur (at groin level), was considered a "trauma fracture". The immediate response is to look for child abuse, so they ordered a bone scan and a vitamin D test to determine if Rebekah has any signs of previous breaks. There were none, of course.  Even a forensic radiologist/pediatrician was called in to look at the "evidence".  The final report was "hypodense and gracile bones" and that it was very probable that this break did occur as reported.

Here is some information about osteoporosis and general statistics.  And here is a good reminder for anyone taking medications, especially our kids whose chromosomal abnormalities often exacerbate the potential side effects of those meds: Don't Take That Drug Without the Right Supplement.

I kept asking the doctors about a bone density test (BMD - Bone Mineral Denisty), but they did not do one because they said the numbers are not accurate for pediatric patients. Bone density tests are special x-rays that measure calcium and minerals.  The most commonly used BMD test is called a DEXA scan. The BMD is reported in terms of a T-score. A normal T-score is anything better than -1, osteopenia starts with a T-score of -1, and osteoporosis starts at -2.5. However, these numbers refer to adults, and there aren't really comparable numbers for toddlers.  According to a conversation with Dr. John C. Carey (Professor, Geneticist, Author of hundreds of medical papers, Medical Advisor for SOFT - Support Organization for Trisomy 18, 13, and Related Disorders, and a great friend/advocate to the trisomy community!), many trisomy 18 kids have been reported to have BMD  T-scores of -3.


So I kept digging for more information. Commonly listed characteristics or health problems of trisomy 18 children include reflux, weak muscle tone, heart defects, kidney defects, neurological issues, among many other things. Even if health is great, diet is great, and bones appear to be developing normally, children who are nonambulatory have weaker bones and lower tone than typical kids. Also, what the lists don't tell you is that there are additional risks associated with the treatment of these health issues. Many of the medications given to address these health issues can affect other parts of the body.  For example, throw in proton pump inhibitor meds for reflux, and guess what... you have a potential recipe for brittle bones!  (In 2011 & 2012, the FDA issues some warnings regarding PPIs and the potential for bone fractures and breaks.) I did not really connect the dots to any of this until we experienced a broken femur and started researching different reasons why trisomy kids' bones seem to break easily.

• http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm213321.htm
• http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm213206.htm
• http://www.aafp.org/online/en/home/publications/news/news-now/clinical-care-research/20100601ppifracture.html

A few days after Rebekah was casted, I spoke with our nursing agency's nurse supervisor about Rebekah's care in the spica cast. She reminded me about changing positions every 2 hours. I remembered reading that in the pamphlet, and figured it was to prevent sores, issues with pressure points, etc. She said to make sure some of those positions are sitting up as best as we can do (which is very difficult since they casted her leg with two angles - one at the hip and one at the knee. Best we can do is about a 45 degree sitting angle.)  Anyway, she told me the positioning change is to PREVENT PNEUMONIA. I didn't realize that. She suggested CPT too. Well, got me thinking... so many of our little ones are prone to pneumonia. I wonder if it is partially because they are lying down too much and not getting moved into different positions? Plus, maybe every little one should get CPT as just general care early on?  

Anyway, I see trends and correlations between all these things! I hope passing along this info helps other families as they face different health issues and risks associated with trisomy 18.

IMPORTANT WARNING ABOUT THE NEW DEVILBISS SUCTION CONTAINERS

IMPORTANT SHOUT-OUT TO ANYONE USING A DeVILBISS SUCTION PUMP:

Model 7305 with original
(discontinued) canister.

If you have an older gray DeVilbiss suction pump (7305 Homecare Suction Unit), or even if you recently switched to a newer pump, you probably have noticed that the canisters have changed and the filters are now BUILT INTO the top of the canister lid. This new design was made specifically for their new pump - Vacu-Aide Quiet Suction Unit but they made the design to also fit the gray machines and have stopped producing the old canisters with the external bacteria filter.

Vacu-Aide Quiet Suction with
new multi-model canister.

PROBLEM - THIS FILTER CANNOT GET WET! IF IT GETS WET, THE MACHINE OCCLUDES AND WILL NOT SUCK!!

Here is what happened to me -
My trached child, Rebekah, vomited in the middle of the night.  As all parents of trached kids probably fear, my worst nightmare was realized - it went INTO her trach and she aspirated.  I went to suction her, and the motor was working but the tubing had no suction. The canister appeared to be occluded. I had just replaced the canister with the new canister model that I received with my monthly supplies. I thought maybe I had installed it incorrectly. Let me tell you, I panicked! Thank God I kept an old canister and I was able to grab the old one, switch to the old filter, and I was able to get her airway cleared.

I wash my canisters religiously and even before first use. I have personally destroyed 3 of the new filters before even using a canister successfully because I washed the lid and did not remove the top piece with the filter. After all, there were no instructions, no warnings, how was I to know? I always wash my canisters daily, even before first use. My daughter doesn't need constant suctioning, so it wasn't until the next situation that I finally realized the problem - THE FILTER WAS DESTROYED AND OCCLUDED THE CANISTER.

So I am now trying to remember (after 3 1/2 years of using the old canister system) to remove the top part of the lid with the filter. Last time I did this by the sink where I was washing the rest of the canister unit, guess what happened? Yep, the piece with the filter fell into the sink too and got wet.

What a poor and DANGEROUS design!! AND WHY DID I NOT KNOW ABOUT THIS CHANGE?? There was no instruction, no warning, no information whatsoever on how to use the new style canister. My DME didn't know to order extra "new" filters for me or tell me not to wash the top connector to the lid. I did not know to call the company for instructions or look on the website.

So I called DeVilbiss Customer Service to complain and warn them that this topic has come up on several special needs boards. I explained that I need a filter ASAP.  I am told the part number to order more filters (7305D-635 for a pack of 12). Well, that's NICE, but what if I had not had an old canister/filter lying around? It's "nice" that I can order more filters, but that certainly didn't help the immediate situation. I did search for quite some time online for these filters. All of the online suppliers, even nextag and amazon, only have the OLD filters! So I don't even know where you are supposed to purchase these.  Bottom line, if I didn't have an old canister, I would've had to call 911 and my daughter might have ended up with aspiration pneumonia, or worse.

But back to the call... I also asked customer service why there was no warning or instructions. I was told the online FAQs for the Vacu-Aide Quiet Suction does say that a wet filter will occlude the canister. Sure enough:

Q7: When should the filter of the disposable canister be replaced?
A7:   1. If it becomes wet (it will immediately occlude when wet)
         2. Between patients
         3. When disposing of a used canister (the filter actually becomes a plug for the suction
canister when disposed of)
However, this isn't even my model! I have the 7305. It is no where to be found on my model's FAQs. In fact, the manual and the picture for my model still have the old canister and filter system (which is no longer being made). But the an improved 7305 model IS still being made. So why isn't this vital information updated and posted on the website? Once again, the info is with the new pump info. 

I did find an example of the old versus new canister set up: DeVilbiss Disposable Suction Container Kit Configuration.


So, if you have a DeVilbiss pump, please call them and tell them:

1. The new design is unsafe, 
2. The marketing regarding the new canister is terrible, 
3. The instructions and warnings for use are missing,
4. The filters are difficult to find, and 
5. Every bottle should come with an extra filter "just in case" you accidentally drop your canister and get the filter wet, wash the whole lid, or knock the filter top into the sink (like me).

Here is the customer service number: 800-338-1988

A Photo Story...

No words really necessary...

Sometimes being a brother is even better than being a superhero.  ~Marc Brown

The "Ah-Ha" Moment

I had an “ah-ha” moment this evening as I was putting the boys to bed. 

Rebekah has been in the hospital for the last 8 days, and I am exhausted physically and emotionally. The boys were bickering, name-calling, and complaining, and my usual screaming threats to tar and feather them were not working. When they continued to be nasty, for the first time in a long time, I stopped yelling back at them, grew silent and serious, and began to tell them about one of our biggest blessings of having Rebekah - appreciation for life. We almost lost Rebekah to a bowel obstruction last summer, and when this hospital trip confirmed another bowel obstruction, we all had some fear and despair of weeks in the hospital (or worse). So I explained to those precious boys that we have been gifted through Rebekah. Even my 5 year old appreciates seeing his little sister and misses her when she's not there. He understands the threat with each hospital admission.

So my conversation with those sweet boys went something like this...
Because we're a family, we will have disagreements and arguments with each other. But we need to know that, just like Rebekah, none of us are promised another day. There could be a terrible accident, and you could wake up to find out that your brother is dead. Do you really want the last memory of your brother to be that you called him a loser? Or an idiot? Don't you think that it would fill you with guilt and sadness when you remember your last conversation?

Ephesians 4:26-27 says: And "don't sin by letting anger control you." Don't let the sun go down while you are still angry, for anger gives a foothold to the devil.

So I want you all to lie here silently and say a prayer for forgiveness and a prayer for patience and love for your brother.

I left the room for a few minutes and came back to total silence. I don't think my house has EVER been that quiet.  Then I tucked them in and prayed for our whole family to have the kind of grace and forgiveness for one another that we have received ourselves.

I became really sad, because I had done something in anger recently while under the stress of Rebekah being in the hospital. I could blame it on my exhaustion and situation, but the truth is, I have to own up to my own mistakes.  And I can do that because I know being a Christian doesn't mean I am perfect... it means I can admit and recognize my imperfections.

So I called up a friend who I had hurt in a public post on Facebook, and apologized. She had even left our support group that had been her lifeline when her son was younger. And that was never my intention or desire! I would never want to take away someone's support network, or make them feel like they had to make a choice between friends.  The individual posts that led my "meltdown" aren't important.  The truth is, I acted in anger, and hurt someone as a result. But even worse, I influenced others to think ill of this mom. And, like me, she is a mom that just wants support and to advocate for her child.

So I told her sincerely, from my heart, that I am truly sorry - not just for making it a public post, but for making her out to be a terrible person. I never thought about how my post would influence others nor trigger some to send her hurtful messages as a result. And that was never my intention!! And I would never want to take away someone's support network.

I apologize to my support network also. I did not mean to make my personal issues public. I never intended to drag you down with me.  I pray that you will show grace to both of us.

Although it is very late now and I am still riddled with exhaustion and the threat of a 6 am alarm clock, I think I will sleep the next 4 hours better than I have all week. And I go to sleep praying for each of us to have many of these ah-ha moments in our lives... for it is these trials that mold us, hopefully, into better people.

Our Trisomy Community Has a Voice

Our Trisomy Community Has a Voice...
Children with Trisomy 13 and 18 and Their Families are Happy!

On 7/23/2012, a precedent-setting study was published in PEDIATRICS – the official journal of the American Academy of Pediatrics. The study consists of 503 invitations sent to families using social networks as support systems in the care and management of their trisomy 13 or 18 child.  An amazing 332 questionnaires were returned (87% response rate) representing 272 trisomy 13 or 18 children. I am proud to be one of those families!  

Why is this precedent-setting? 

• First of all, there are NO OTHER studies of trisomy 13/18 children represented by such a large sample group! 
• Second of all, this study will challenge the medical community to rethink how they manage families facing a diagnosis like trisomy 13 or 18.  

My personal hope is that the medical community will also start partnering with the real experts on trisomy – the PARENTS – to help make decisions in the care and management of future trisomy children. We are bringing together families worldwide through social networking, and working together to create resources that will give families the information they need to make informed decisions about their trisomy children. Some of this information is based off of the small number of medical studies (with small sample sizes) that have already been published on trisomy 18 and 13 children. But the majority of it comes from the actual experiences of hundreds of parents and family members involved in the direct care of a trisomy child. Some of this information is already being captured (and has been for years) through a project called TRIS (Tracking Rare Incidence Syndromes) and through the annual conferences and medical information collected through SOFT – Support Organization for Trisomy 18, 13, and Related Conditions. There are also several social networking groups on facebook and nonprofit trisomy organizations working together to create a Parent Experiential Database to summarize much of the knowledge learned and shared between trisomy parents dealing with complex health issues. The beginnings of this parent database will be captured by the end on 2012 on www.hopefortrisomy.org.  We hope this will also inspire the medical community to do more studies on our children, and to change the view that trisomy 18 and 13 children are incompatible with life and not worth the time or effort to give compassionate and potentially life-saving care.

As for the Pediatrics-published study, one of the most well-published academic neonatologists in the world (and a true humanitarian) posted about the study on his neonatal research blog. He offers EXCELLENT ADVICE (and a little criticism) to his colleagues. 

And here is just a brief look at how this new study has affected the news...

The Most News Seen on Trisomy 18 or 13 in Such a Short Time!
These are just a few of the pages and pages of references to the Pediatrics-published study...  

• The Canadian Press – Toronto (7/23/12): Parents of babies born with disabling anomalies report they enrich families
  “This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation,” says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax. “The negative narrative needs to change. Parents’ experiential knowledge matters and should be available to expectant parents and new parents.”   
• Daily RX(7/22/12): Trisomy 13 and 18 children and their parents lead rewarding lives
• Deseret News(7/27/12): Parenting Severely Disabled Kids Can Be a Great Source of Happiness 
  "Regardless of the length of their lives, children with trisomy 13 or trisomy 18 — a chromosomal abnormality that can cause shortened lifespans and severe disabilities — not only led happy lives, but enriched the lives of their families, according to a new study published in the journal Pediatrics July 23."
• EurekAlert! (7/23/12): Children with trisomy 13 and 18 and their families are happy – Quality of life perceived by parents is better than that predicted by physicians
• Europe Med (7/25/12): Children With Trisomy 13 and 18 Are Happy Despite Poluar Beliefs
• Fox News (7/23/12): Parents, docs may clash on quality of kids’ lives
• HuffPost Living Canada: T13,T18 Babies Born With Congenital Anomalies Reportedly Enrich Families
  "A new Canadian study drawing on the experiences of parents paints a dramatically different picture than that in medical literature of the short lives of infants born with the congenital anomalies Trisomy 13 and Trisomy 18.Medical textbooks are grim and bleak about babies born with genetic codes considered "incompatible with life." But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it."
• JAAPA (Journal of the American Academy of Physician Assistants) and MPR (Monthly Prescribing Reference)(7/23/12): Study Examines Effect of Trisomy 13, 18 on Families, Providers
• Medical News Today (7/24/12): Children Eith Trisomy 13 and a8 Are Happy Despite Poluar Beliefs
• Medline Plus (7/23/12): Parents of Severely Disabled Kids Say They Enrich Their Lives 
• Montreal Gazette (7/25/12): Parents of kids battling rare disorder Trisomy 13 fight back – Doctors take approach to condition, they say
• Neonatal Research blog - Dr. Keith J Barrington (neonatologist and clinical researcher and chief  of service at Sainte Justine University Health Center in Montréal.): “Our children are not a diagnosis”: the family experience of trisomy 13 and 18  Dr. Barrington includes a list of guidelines that neonatologists should follow. "This study points out the uniqueness of each of these children and the heterogeneity of condition and survival. They emphasize that we cannot be definite about the duration of survival or the capacities of an individual. They conclude: Parents who engage with parental support groups may discover an alternative, positive, description about children with T13-18. I conclude; we need to rethink how we present diagnoses of serious conditions to parents." Science Daily (7/23/12): Children With Trisomy 13 and 18 and Their Families Appear Happy
• Seattle Children's Hospital (7/24/12): Social Networks Serve as Source for Parents  "Mildred Bay initially found some solace and information via social networks.  A pediatrician by trade, Dr. Bay was a resident at Seattle Children’s and now works at Peninsula Children’s Clinic.  Lucy, 3 and one-half months old, has trisomy 18.  Dr. Bay said hearing that diagnosis was a complete shock. ...  “I would look at various blogs and websites, and learn about what other families’ experiences were like.”  Many families have very intense but ultimately very positive experiences with their children despite the diagnosis, she found.  “As a pediatrician, and having worked at Seattle Children’s, I knew kids with complex medical issues.  The road is hard, but not unmanageable if you have the right support.”"  
• Suite 101 – Pregnancy & Childbirth (7/25/12): Raising a Child with a Disability – Parent’s vs Physician’s View 
• US News & World Report (7/23/12): Parents of Severely Disabled Kids Say They Enrich Their Lives – Families dealing with trisomy 13-18 face grim predictions, turn to online support, study found  "When Vanessa Hernandez's sixth child was born, she knew right away her daughter was different.Hernandez's pediatrician wept as she told her the diagnosis. The baby had trisomy 13, a devastating chromosomal abnormality. Most children die before their first birthday and have serious mental and physical disabilities, including heart and breathing problems....according to the study in the August issue of Pediatrics. Many parents -- 87 percent -- were told their child's condition was "incompatible with life," 57 percent were told their child would live a life of suffering, 50 percent were told their child would be a "vegetable" and 23 percent were told their child would "ruin their family." The medical community, including the American Academy of Pediatrics Neonatal Resuscitation Program textbook, recommends against resuscitation for trisomy 13 and 18." 
• Washington Post (7/23/12): Varying views on Trisomies 13 and 18

More on Barb Farlow's Story: 
Barb Farlow is one of the co-authors of this amazing study.  I am extremely privileged to know Barb. She is such a tremendous resource to the trisomy 13 & 18 communities. Her story about her T13 daughter is worth the read! She is an amazing woman and mother, and an incredible advocate for our children.  

• The decision to accept disability: One family's perspective
• Misgivings
• Montreal Gazette (7/25/12) –  Parents of kids battling rare disorder Trisomy 13 fight back 
• Annie's Related Stories

Looks Great!...On The Surface (i.e. What You See is NOT Always What You Get)

The Big Buzz in the Disability Community is the UN Convention on the Rights of Persons with Disabilities. On the surface, this is a GREAT list of societal attributes to aspire to. Who would publicly admit, or even debate, that they don't agree with the general principles of the convention? They describe a level of humanity and dignity that everyone deserves.

(a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;

(b) Non-discrimination;

(c) Full and effective participation and inclusion in society;

(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

(e) Equality of opportunity;

(f) Accessibility;

(g) Equality between men and women;

(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

I certainly want to see this for all disabled people!  And as the parent to a severely handicapped child, I want the USA to aspire to all of these principles! The problem is, that isn't the issue, or the debate!  The USA is already leaps and bounds above other countries of the world in providing disability rights to its citizens. Our grand-daddy of disability laws is the Americans with Disabilities Act. Then there is the Assistive Technology Act .  Our Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act are essential for the amount of inclusion and resources that families with disabled children have in an educational setting - much more than anywhere else. The Architectural Barriers Act specifies design requirements for new and remodeled buildings. Until you travel internationally with a wheel chair, you just cannot appreciate how access friendly most of our buildings are.  In fact, if you need more evidence that the USA already "gets it", then this US Department of Justice Guide to Disability Rights Laws may help inform you of just how far we've come. 


Are we perfect? Of course not. There is plenty of room for improvement! But listening to my many international friends with disabled children, we have been paving the way for disability rights long before the UN took up the fight.  We do not need the UN to direct us in this path.


So what exactly is the problem?
I was going to list a bunch of issues and directly relate them back to the Convention details, but there are some organizations out there who have already done this.  Here are some links you can check out to get more info on the topic:

• Protecting the Rights of Parents and their Children, by Karen and Rick Santorum 
• Homeschool Concerns:  http://www.hslda.org/docs/news/2012/201205250.asp
• Senate Debates:  http://www.disabilityscoop.com/2012/07/13/disability-rights-senate/16008/
• Finding the Gaps - Comparative Analysis Between US Disability Laws and the UN Convention on Rights of Persons with Disabilities:  http://www.ncd.gov/publications/2008/May122008 (Although this is a pro-convention article, there is a lot of good information here regarding current US disability law.)
• Debatewise - Should the US Congress ratify the UN Convention?:  http://debatewise.org/debates/988-should-the-us-congress-ratify-the-un-convention-on-the-rights-of-persons-with-disabilities (and YES, point 4 on the "no" side is my submission!)

The article, Protecting the Rights of Parents and their Children, by Karen and Rick Santorum, does an excellent job of summarizing many of the issues I personally have with the convention. 


But even beyond their points (that I totally agree with) on disabled children, homeschoolers, and our God-given rights as parents, I have two other issues.

1. I just don't understand why any US citizen would want or feel obligated to bow to a governing body that we did not vote for nor has our country in their best interests. It is not a democracy to allow a foreign body the authority to compel our conformance to regulations written by UN bureaucrats. Paragraphs 10, 23, and 25 of the treaty are so broadly written that they might even be interpreted to affect right-to-life issues. 
2. Who is the UN's Health "arm" that defines policies and standards for worldwide healthcare issues? Not who, but WHO - World Health Organization. :-)  From their website: WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.  Not many people will *get* this point because it directly relates to those with children internationally defined as "lethal anomalies".  This subject is near and dear to me, as my daughter's condition is one of the so-called "lethal anomalies". (Good thing she doesn't know this!!) On page 43 of the WHO manual entitled Primary Health Care Approaches for Prevention and Control of Congenital and Genetic Disorders, the "options for best possible care in common congenital disorders" defined for trisomy 18 is... palliative care (surprise! surprise!).  Please note that this is the only option listed for trisomy 18.  And that protects my daughter's disability rights...how?!  And if you do some digging (and WHO does not make it easy to find these documents, most references are accidentally found on other medical or related websites), you will find more disturbing references regarding those with severe cognitive disabilities.  And, as far as I am concerned, ANY (health-related) conventions created by the UN will implicitly follow the policies set forth by WHO as implied by their definition.  

Maybe I just got lucky? After all, my daughter DID go home on just Hospice / Palliative Care at the age of 6 days old, mostly because we were told that trisomy 18 children just don't live. Well, after seeing her fight and her will to stay here despite such severe apnea episodes around the clock that we nick-named her "Blue Belle" as she set off her apnea monitor constantly, we took her off hospice and went back to the hospital at 6 weeks of age. She surely would have died in a few more weeks as the stress of no sleep and inability to breathe slowly deprived her organs of oxygen and weakened her body despite her fierce fighting spirit. And even though the hospital did start all kinds of tests to determine the problem (which was defined as central apnea before any testing had even begun - just because that's what doctors are told - trisomy kids die from central apnea and/or heart conditions), we were still told it would be better not to pursue interventions.  Once a simple full sleep study showed that she had severe OBSTRUCTIVE APNEA, and not central apnea, we were able to gain medical support and quickly move to address her apnea through a trach to stabilize her. She is now a relatively healthy 3 year old (despite her delays) with full trisomy 18.  Her prognosis is unknown because she has defied the lethal anomaly / incompatible with life label.  She is Rebekah, a loved child.  On the surface, she is see as Trisomy 18.


So I leave you with the thought that what you see (on the surface) is not always what you get - neither with the UN Convention on the Rights of Persons with Disabilities, nor with Trisomy 18 and my daughter. 

Hypersensitivity in Trisomy Kids

Many trisomy kids have sensory defensiveness or sensory processing disorder (in layman's terms, hypersensitivity to touch and/or tactile input - including oral stimulation).

When Rebekah was a little over a year old, we worked with an OT that had us perform the "Wilbarger Brushing protocol" on Rebekah. It helped tremendously and we were actually able to get her to eat some orally and not react to physical input with crying. It also helped her become better at managing sensory-overload situations (like really busy, really loud places).  We eventually stopped the program because we were not seeing additional benefits. But last fall, Rebekah decided she didn't want anything in her mouth anymore. We figured it was just due to becoming more active physically. Many special needs kids will advance in one area, and regress in another for awhile. Well, her oral defensiveness has not gone away and we've lost ground on the oral feeding. Plus Rebekah sometimes acts strangely when touched in certain places. So her nurse and I discussed starting her back on the brushing program that we thought was helpful before.

The formal name of the program is called the The Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) and Oral Tactile Technique (OTT) and its for Sensory Defensiveness (hypersensitivity to touch and/or tactile input) and Sensory Processing Disorders (SPD).  It was developed by Dr. Patricia Wilbarger, MEd, OTR, FAOTA, an occupational therapist and clinical psychologist that has been working with sensory processing theories for over 30 years. I've seen statistics that only 20% of kids will not benefit. About 40% will be greatly improved, and the other 40% will see some kind of improvements. Minus the starting week of the program, I think this is pretty good numbers for a relatively easy method, so I recommend it to my hypersensitive friends as a good method to try!

To begin, you need to find a therapist (PT, OT, or SLP) trained in the program because it is not recommended to do it without For the first 1-2 weeks, it requires dedication and is intense with the exercises (which only take a few minutes of time, but have to be done every 90-120 minutes around the clock). Once the first 1-2 weeks is completed and the therapist hat is working with you on the program promotes them beyond this initial phase, it then only needs to be done about 3-4 times per day.

Program Steps:
1. Take a deep pressure therapeutic brush and brushing the arms, legs, back, hands, feet in a quick, deep circular or back and forth movement. (This is basically a cheap plastic bristled surgical brush.)
2. Follow with a regiment of joint compressions.
3. Afterwards, complete the oral part of the protocol which requires oral swiping of the mouth a specific number of times followed by a certain number of jaw compressions.
4. The technique should be followed with daily activities that also stimulate proprioceptive input.

Possible Benefits:

• improved processing and less defensiveness
• calming
• improved attention
• improved transition between activities
• improved tolerance to being touched
• better sleeping
• better therapy tolerance
• better central nervous system - peripheral nervous system communication which results in movement coordination and better communication

Unfortunately, I cannot find detailed instructions online for the method. Guess that's why you have to go to a therapist trained in the method! But here are some links giving further information about the program and supplemental activities you can do to help improve sensory defensiveness.


Resources:

• http://www.sensory-processing-disorder.com/The_SPD_Companion-Wilbarger-Protocol.html
• http://www.ot-innovations.com/content/view/55/46/ 
• http://www.developmental-delay.com/page.cfm/208

It is important to remember that this is just ONE possible "treatment" for sensory issues and defensiveness. It will not work on every child. But we did have success, and are looking forward to seeing some more success when we start again. For an 80% success rate, I say, why not try it?!

Camp New Hope Vacation

What an incredible week we had! To learn more about Camp New Hope, see my previous blog post. To see our plethora of photos, feel free to visit our online album.

Day 1 - We arrived at Camp New Hope in the afternoon. The weather was beautiful and we basically spent the evening making dinner and getting settled in.

Day 2 - Michael and I got to take a ride up to the top of the Camp property and look at the view around us. This was the only place we could get cell phone service with our AT&T phones.  The boys got to spend fun time in the "shed" and the camp dogs, Mo and Nash, followed us around camp looking for a free handout.  The grandmas started on their week long project - a 1000 piece puzzle where all the pieces were about the same color.

Beautiful view from the top of the property. You can see one of the neighboring Christmas tree farms. We are convinced that  Jefferson, NC / Boone County is the Christmas Tree capital of the US. 

With Grandma K watching Rebekah at the lodge, Michael and I actually got to sneak away for a little time together (which doesn't happen often!).

Michael taking advantage of the cell phone service on top of the mountain to call into work.

Grandmas working on their puzzle.

The "Shed"... slightly bigger than most sheds. 

The Shed is filled with ping pong, pool, air hockey, video games, play area, and, what became Elijah and Grandpa's favorite feature, INTERNET! They could only get connected at the shed. I managed to stay offline all week.

Mo (white) and Nash (black) are the camp dogs. Mo likes hitching a ride on the Kabotas.

Day 3 -  This was a really busy, fun-filled day!  Michael, Grandma B, Elijah, and Jeremiah went fishing. No luck catching anything, but the other family at the camp this week caught like 90 fish over the course of the week! We took the grandparents for a Kabota ride and spent some downtime in the lodge. A park ranger came to the Shed and did a presentation for us on animals found in the NC mountains. We got to feel the pelts of many different animals and learn a little about NC nature. We also did a little tubing down the river. We ended the evening taking our whole crew to the local movie theater to see Madagascar 3. They provide free admission for the families staying at Camp New Hope!

Jeremiah and Grandma B fishing in the New River.

Kubota transportation to get around the camp!

Everyone loves to ride the Kubota!

Chillin' on the couch.

Relaxing in the sunroom.

A Park Ranger came and did a presentation for us about all the local SC animals. 

Family tubing time!

Day 4 - Day 4 started out with a nice mountain drive to a local family's homestead where we got to take a tractor ride around the property, go for carriage rides, and do a little horseback riding around the stable. The kids played a outside for a good part of the day, and we ended with gigantic marshmallow smores cooked in our personal lodge fire pit. I do not recommend the giant marshmallows, they make a big mess!

Fun on the lodge's playground area.

River playtime. Daddy strung up the boys as they went out over the rapids so they didn't accidentally get wisked down the river.  It was a pretty shallow river for the most part.

Helicopter riding.

Grandma and Grandpa K petting the horse.

Hi ho Silver, away!

Elijah riding...

Susan and Rebekah taking a ride.

Grandma B enjoying a carriage ride.

I think the boys enjoyed most the digger toys in the middle of the barn.

Boys will be boys!

Smores time!

Cooking smores over our firepit.

Don't ever use the gigantic marshmallows for smores. They are way too messy!

Day 5 - Michael started out the day taking his 84 year old mother on a short canoe ride. After lunch, we had a personal visit from Santa Claus! Michael, Elijah, Jeremiah, Josiah, and I took a 2 1/2 hour canoe ride 5 miles down the New River, then hauled the canoes back to camp on a trailer. We did pause for some yummy hand-dipped ice cream in waffle cones! Isaiah missed out on that, but he was spending the afternoon playing games with the grandmas. Since this was the last full day at camp, we had the boys spend lots of time playing games with grandparents while we started packing up all of our equipment and luggage, and Michael showed up just in time to help the Grandmas finish their tough puzzle before the end of the week!

Family canoe time.

Michael, Elijah and Josiah

Getting ready to canoe.

Despite being on vacation, we did make Rebekah do a little therapy. Grandma K had fun entertaining her.

Josiah and Josiah teaching Grandma K how to play the game Hissss.

Elijah, Jeremiah, and Grandma B playing Racko.

The Grandmas finished the puzzle before the end of the week! Michael showed up in time to try to put one of the last pieces in. :-)

Michael taking his mom for a canoe ride.

On their way for a canoe ride.

This is Santa Claus's summer transportation. The license plate even said North Pole.

Santa comes each week to visit the kids at the camp.

Rebekah thought his beard was interesting.

Day 6 - We got a special treat on this day. A photographer came and took our family up into the trails and took pictures of all of us. We will get edited, royal-free photos sent to us on a cd once they are done working on them!  We left camp and headed home after lunch.

Trying to get a picture taken in the woods. We were able to get Rebekah to smile the whole time, but Josiah was being a stinker!

Here is the photographer who donates her time and effort to take family photos for the Camp New Hope visitors.

This is Randy, the camp Director. She has been working full time at Camp New Hope without pay for several years. She has a heart of gold!

Needless to say, this was an incredible week! We hope we get the opportunity to go to Camp New Hope again, and we are so very grateful to the Adkin brothers, and to Randy, Steve, and all the other volunteers who work hard and sacrifice much time and money in order to provide a special experience for our special children.