Tuesday, April 21, 2009

Minivan Yoga

I love my yoga classes.  I need my yoga classes.  I crave my yoga classes.  I can only go when the kids are in school and I have no morning meetings.  So I only get to go about 3 times a week.

This morning, as I was driving to school with my right arm twisted around to the back seat behind me holding Mack's hand, straining to look over my left shoulder,  I realized that I was really getting a good stretch...I am doing some sort of yoga...Minivan Yoga!  There are also "poses"I must utilize to pick up dropped food, toys, etc in the back seat and there are often times when both Mack and Grace want to hold my hand at the same time.  This must be done safely and effectively.  It is an art form!

Hmmm...When you don't have time to go to a yoga class, just do it while you are playing taxi cab with your kids.  

I am going to make millions!!!  Mommies everywhere will want to do this.  There will be a video, a book and I will be asked to teach classes all over the world!

I knew if I thought hard enough, I could come up with a great money making plan!!!  Okay, who wants to be my first student?

Thursday, April 16, 2009

I Hate It

May I vent?  Well, of course I can...it's my blog.

I hate cerebral palsy.

I hate not being normal.

I hate going to the playground.

I hate not being able to visit with the other mommies at the playground and play groups.  I don't get to know the other mommies.

I hate it that all the mommies sit around and chat while I am being my daughter's legs.

I hate it that I don't like to go to play groups anymore.

I hate it that these same mommies will talk about cerebral palsy and "the little girl in KinderMusik who has cp and can't walk so she crawls around awkwardly", when they think I'm out of earshot.

I hate that my 3 1/2 year old daughter sits in the stroller while I help my other two kids go down the fireman pole.

I hate that when my daughter requests "I want to slide too" that I can't let her because the slide is too tall and I need someone to help me.

I hate it that I leave her in the swing too long sometimes, because it's easier.

I hate it that some mommies with 2 perfectly normal children can't find time to do anything but talk about how smart and athletic they are. (I know I'm kind of harsh on that one)

I hate it that I can't find time to do anything because I'm always taking my daughter to therapies and doctors.

I hate it that all our money goes toward therapies and procedures rather than dance lessons and soccer camp.

I hate it that I can't do more with my other two kids because I am my daughter's legs.

I hate it that I hate it.

What do you hate?

Better Than Normal

Mel is giving away more crowns!!!
Check it out here  and enter to win!

Wednesday, April 15, 2009

Tuesday, April 14, 2009

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.

Friday, April 3, 2009

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.

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.

Thursday, April 2, 2009

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.

Wednesday, April 1, 2009