Blue Sky July

I just finished reading Blue Sky July by Nia Wyn.  Amazing and wonderful!!  This book began as Nia's diary after her son is diagnosed with severe cerebral palsy.  She will stop at nothing to find a cure for her child although she has been told he will "never know her".  This story is about a mother's unconditional love for her child that will never be fully accepted by others.  The book is painfully beautiful and poetic.  Here is an excerpt...

"As we pass the running children who hold up their heads so easily, I realize miracles are so commonplace we barely recognize them anymore, and near the mothers anxiously comparing milestones at the school gate, I see how we live in a time where normal is never enough and we are never full." 

If you have a child with special needs, this book is a must read.  If you don't, read it anyway...then maybe you can better understand the mother of the child in the wheelchair.  You won't regret it.

More About PERCS

Several people have asked me for more information about PERCS so here you go.

To PERCS or Not to PERCS

So many doctors, therapists, parents...so many opinions.   As a parent of a special needs child, you are never too comfortable with the decisions you have made regarding therapies, procedures and surgeries.  You research it ALL, you talk to EVERYONE and you pick and chose...somtimes based soly on your gut feelings.  Well, my gut is changing.  

I HAD decided that they would be NO SURGERIES for at least 2 years and I HAD felt great about that decision.  However, I am very close to deciding the the PERCS procedure (please read more about it below) is just what Grace needs to get her mobile.  I have now seen 4 children, before and after PERCS, and am amazed by the progress.  We will be going to Galveston to see Dr. Yngve very soon and we will do what he says....I think.  Please pray that we will make the right decision.   I'm praying like crazy!

Comment from Dr. Yngve:
I first heard about the Percs (SPML) procedure from a Physical Therapist in the fall of 2005. She had heard about great results with this procedure at a Physical Therapy meeting. I had never heard of the procedure and she urged me to look into it. I found Dr. Nuzzo’s web site (www.pediatric-orthopedics.com) and learned a lot there but still had more questions. In April 2006 I visited Dr. Nuzzo in New Jersey for 2 days started on the process of learning the procedure. I have now done over 100 cases and have been pleased with the results. This procedure does a lot more than Botox, and doesn’t have the long recovery period of surgery with full length incisions.

PERCS (SPML) F.A.Q.
What does Percs (SPML) refer to?
Percs (SPLM) refers to an outpatient surgery usually under a general anesthetic for the treatment of the spasticity and tight tendons that are found in children with cerebral palsy. The name Percs comes from the surgical term “percutaneous” which means using very small skin incisions. The Percs (SPML) method has been developed over the last 20 years by Roy Nuzzo M.D. of Summit NJ. SPML stands for Selective Percutaneous Myofascial Lengthening. I use the term SPML to refer to the specific techniques taught by Dr. Nuzzo.

What is exactly done with the Percs (SPML) procedure?
The Percs (SPML) procedure involves releasing tight bands of tendon. This is done where muscle and tendon overlap. These areas of overlap are areas where a tendon starts to blend into a muscle. The tendon spreads out and is thinner at this location and is called Myofascia. When the myofascia is cut, the muscle under it can easily stretch and lengthen.

What part of the body can be treated with Percs (SPML)?
Some children have tightness and spasticity in many locations in the legs, with the Percs (SPML) procedure, many areas can be addressed during the same procedure.
Common areas for Perc (SPML) surgery are:
n at the back of the ankle for calf / heel cord tightness and spasticity
n behind the knee for hamstring tightness and spasticity
n in the groin area for scissoring gait and groin spasticity

What age can be treated with Percs (SPML)?
Percs (SPML) works well for children of all ages and for adults. Because Percs (SPML) procedure uses micro incisions only about 2 mm long, there is very little scar that forms as a result of the procedure. This is a good feature since scar is known to be associated with recurrent contracture. This allows Percs (SPML) procedure to work well for all ages, including groups that have a reputation for recurrent contracture following conventional tendon lengthening surgery such as very young children and adolescents.

What are the long term results of the Percs (SPML) procedure?
The best data comes from Dr. Nuzzo’s web site where he reports a 5 year review of 278 cases. “Post op admissions were 0.01% (4 cases, single night). Repeat procedures at any location were 10%. Recurrence of operative site contracture occurred in 7%. There were no cases of infection, over lengthening, significant hematoma. All surgeries were performed supine. None required surgical room time in excess of 60 minutes. Parent satisfaction was positive in 100% with similar follow up survey results one year later.” My results have been similar.

Can the Percs (SPML) procedure decrease spasticity?
Yes. Walking on a contracted joint puts a strong pull on the muscle- tendon unit with each step. This stimulates spasticity. Lengthening the muscle- tendon unit decreases the spasticity in that area. The beauty of Percs (SPML) is that since it is practical with the minimal incisions to lengthen muscle- tendon units in many locations in the lower extremities, spasticity can be decreased in many locations.

What is an alcohol nerve block?
The alcohol nerve block is a common procedure that is done at the same time as Percs (SPML) in children who have overactivity of the obturator nerves, which are nerves in the groin that contribute to stiffness of the hips or scissoring gait, in which the legs cross in front of each other in walking. The alcohol nerve block takes the nerve from an overactive spasticity related state to a more normal active state. It does this by dissolving the fatty coating, called the myelin sheath which is wrapped around the nerve. The nerve itself remains intact. The myelin sheath can grow back in about 3 years. The alcohol block is often used to decrease spasticity in the legs when it is associated with groin tightness.

How is the ankle area treated after the Percs (SPLM) procedure?
There will be a cast from below the knee to the ball of the foot. Walking is encouraged. It is best to put a shoe directly over the cast. One type of shoe that may accommodate better to the width is the Vans brand, because of the construction on the tongue and laces.

How is the knee area treated after the Percs (SPML) procedure?
We will put on a knee splint made of cloth and foam with Velcro straps after the procedure. You can take this off for daytime activities. It should be worn every night for a month to prevent sleeping in a curled up position.

How is the groin area treated after the Percs procedure?
Nothing special is needed.

What exercises are recommended after the Percs (SPML) procedure?
Long sitting. This is sitting on the floor with the knees out in front as straight as possible. This helps to keep the backs of the knees stretched out.
Giant steps. Encourage the child to take as big steps as possible. Try counting the number of steps it takes to walk across the room. Then try to walk across the room using giant steps. You should count fewer steps.
Walking on uneven ground. This teaches the ability to deal with the unexpected. It also teaches fast reactions. It helps in learning new ways to use the legs.

How soon can children resume PT following Percs (SPML)?
Children who have the Percs (SPML) procedure are allowed to walk when comfortable, usually the next day. If not walking by the third day, it is time to start! It usually takes 1-2 months to regain the before surgery level of activity, then expect monthly improvement up to 4-5 months from surgery. Physical Therapy can be very beneficial and can be resumed within the week following the procedure.

My Neighbor The TV Star

We have new neighbors and I love them!!!  There is a mommy, a daddy, a 3-year old, and a baby and they are awesome!  We have so much fun playing with them and I'm excited to have a new friend.  Marnie is an wonderful host, mother, occupational therapist AND a television star!!  She has developed a series of DVDs to help children with their writing and drawing skills.  I'm so excited about these because, well....they really work!  My kids love watching the TV Teacher, Ms. Marnie.  Mack who was really struggling with drawing his shapes now can draw them while he sings the songs from the Strokes, Shapes and Scenes DVD.  I'm amazed and can't wait to start watching letter series with Alphabet Beats.  Mack now will ask to watch Ms. Marnie instead of always wanted to see Lighting McQueen (thank goodness).

Check out the website TVTeacher and order now.  You won't be disappointed.

Now we can't move...I love our neighors!!!!

Fun at the Arboretum

Sunday was beautiful!! One of those days that we will long for in July and August. We spent the day at the Dallas Arboretum with the Hodges. There is a "frontier town" in the back that the kids love to play in. There is a tepee, mud house, long cabin, covered wagon and other cool stuff.   We also played by the koi pond and looked at all the beautiful flowers.  I'm so glad we have this wonderful place in our city.

Wordless Wednesday

Rock Star Sophie

We're Just Playing

It seems that everytime I ask the kids what they are doing, they say "I'm/We're just playing". Well, okay then.

Hmmm...wonder who Sophie is imitating in her pink Barbie jeep.

Obama vs. Sarah

Most of you have heard about Obama's flub-up on The Tonight Show.  If you haven't, you can see it here on Kat's blog.  I LOVE Sarah's response!!  Check it out here on her blog.  Love this girl!!

Cerebral Palsy Awareness Day

Today is Cerebral Palsy Awareness Day!!
WEAR GREEN to show your support!

There is also a sweepstakes going on over at "Life of Logan"
Check it out, follow the rules and enter to win!!

The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Totally Awesome 80's Party - Saturday, May 9th - Benefitting "A Child Can Do All Things"!

Dear Friends and Family-

We would love for you to join us for a fun, care-free evening of flashback fashions, vintage dance moves to the Spazmatics (a rad 80’s cover band) and unlimited food and drinks – a great chance cut loose while “giving back” to ACCDAT!

I love the 80's and can't wait to break out my big hair, lace gloves and leg warmers for the party. This also may be your one chance to see Abe in a mullet and tennis shorts. Let's plan to pre-party at our house and practice our Thriller dance moves.

Most of you know how much ACCDAT means to Grace and our family.  For those of you that see her, you know the improvements that have been made.  She is blossoming in a confident little girl.  Please help us support ACCDAT!

Click here to view the invitation and here to register to attend.

Warmly-
Jacolyn and Abe
214-824-6014

Better Than Normal

Therapies are expensive. Equipment is expensive. Money is limited.

Children with special needs require special therapies and special equipment. Parents of these children want to give their child every chance in life and don't want money to be a hinderance. We look for anything that gives us hope. Sometimes mothers return to the workforce. This is difficult because of all the time required to attend to your child. Some parents try to grow money trees...mine is not producing. Others of us look for other opportunities working at home to raise the money required. I, for one, am selling Enlyten (ask me if you want to know more about because this post is not really about me). The creative mothers (not me) come up with some really good ideas.

My friend Mel, the mother of Daniel, is making the cutest crowns.  They are adorable and if you have a birthday or any other holiday coming up, these are a must have.  Check out betterthannormal.org to see her stuff.  You will love it and all proceeds go to a very worthy cause...Amazing Daniel.

Mel and I have never met in person, but we are kindred spirits and I hope someday we will.

Wordless Wednesday

Going to Oklahoma...on our trikes

Today we took trips on our tricycles in the house. It was a bit rainy and muggy outside. I love doing this because it is one thing Grace can do with her siblings. After talking with their NiNi today on the phone, they wanted to take a trip to Oklahoma...so we did.

Wordless Wednesday