Cerebral Palsy Awareness

Here are some things you might not know about Cerebral Palsy:

• Cerebral means "relating to the brain" and Palsy means " muscle weakness"
• Cerebral palsy is a brain injury.  It is not contagious and it is not progressive - i.e., the injury is what it is and won't get worse over time.
• Cerebral palsy can span the spectrum of slight weakness in one hand to being unable to voluntarily move most of your body.
• Cerebral palsy is usually the result of an injury before or at birth.

How Cerebral Palsy effects our everyday life:

• CP is expensive.  It requires lots of therapy and specialized equipment.  Couple that with the fact that it's very hard to have both of us working full-time and still ensure Emma is getting all the support she needs makes us get "creative" in our finances.
• Having CP requires countless hours on the phone with insurance companies to get therapies and specialized equipment paid for.  This is a thankless job.  And it seems never ending.  It can be exhausting and insurance companies seem to want to make the process exhausting so you will give up and pay for the items out of pocket but I'm not a quitter!  I am, however, thankful for a speakerphone so I can do other things while on a perpetual hold loop.
• We think about places before we visit.  
• For friends and family:  Does so and so's house have a lot of steps to get in?  Is it big enough to bring in Emma's chair or should we plan something else for her while there?  Would it be better to meet out somewhere rather than at a house?  
• For pubic places:  Is there a wheelchair entrance?  An elevator?  Will it be too crowded to roll through the people?  We pre-plan our excursions when we are going to unfamiliar places.  
• We also have memberships to easily accessible places like museums and zoos and use them often.  Seriously, I know of few 7 and 5 year olds that have been to the local museums and zoo so many times that they ask do they have to go there again????!!!!  Mine do.  One day they will appreciate all the culture they are soaking in at such a young age.
• It gets easier and harder over time.  Easier because we are better at knowing what we need and ask for it.  We also have friendships with others that are living a similar life and that is priceless.  Harder because Emma is getting bigger every day and that makes it a bit harder physically.  
• Making adjustments to everything are just part of our everyday.  It takes time, but it's so worth it. 
• Some people say "I just don't know how you do it."  That gets old.  I hate that.  I usually hear "thank goodness it's not me who has to do it."  I would rather people say "I love that you are doing x, y,z.  Can you tell me how I can help with it?"  Usually the only people who say this are others who are living a life similar to ours.  
• I have to ask for help quite often.  I hate asking for help.  I'm getting better at it, though.  But, if I don't ask and you see me struggling....please offer some help.  It will make my day!

Stay tuned for more CP Awareness through the month of March.

March is Cerebral Palsy Awareness Month

March is is a busy month for our family.  It's Cerebral Palsy Awareness Month, Spread the Word to End the Word day is on March 6th, Saint Patrick's Day happens, we'll celebrate several family birthdays and this year Easter falls in March.  That means we are busy around here.

It also means we are likely having LOTS of fun.  Fun is what we tend to do best ;-)

Now, back to Cerebral Palsy Awareness.  As you can imagine, we are pretty aware of it around here.  But there are quite a few things I've found out this month thanks to this post on Reaching for the Stars.

• Did you know over 800,000 Americans and over 17,000,000 people world-wide have Cerebral Palsy, the most common motor disability in children, with higher prevalence than muscular dystrophy, Parkinson’s disease, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome or cystic fibrosis.  Source: CDC,  National Institute of Neurological Disorders & Stroke (NINDS/NIH)
• For example, did you know that Cerebral Palsy receives no dedicated, line-item federal funding for Cerebral Palsy research at the CDC or NIH??  Zero. Zip. Nada.  Does this cause to gasp and shake your head in disbelief?  It should!!  Can we change this?  Yes we can, but it’s going to take families and individuals with CP standing together and raising our voices effectively.

I'm excited to delve deep into Cerebral Palsy Awareness this month and I plan to share more information on it here.  

Surgery - what to cut?

Emma today.  My little Miss Sunshine.

Today was a mixed bag.  We started out the morning with an appointment with a surgeon at a local Shriner's hospital for a second opinion for Emma.  The hospital was amazing.  The people were so very friendly, they were able to get us in for a second opinion without a long wait, and they even provided free parking in the downtown location!  I am sure that magic occurs there daily - heck it's definitely magic when a family knows their child will get the medical care necessary even if they do not have money or insurance to pay for that care.  In this day and age that is so very, very special.

The second opinion was for the adductor release surgery and hamstring lengthening her doctor recommended.  You can learn more about it in this post here.  The doctor we saw today was nice.  He commented that the hospital Emma typically goes to is world class and she looks like she has been getting very good care.  We were glad to hear that - even though we pretty much knew it it's still nice to hear it from another very respected doctor/institution.  We gave him a bit of background on Emma and he said sort of casually that Emma has quite severe CP.  Ouch!  I don't think that should ever be casually stated in passing.  To parents.  Especially parents that have only recently come to terms that Emma's CP is not mild and are wrapping their heads around Moderate CP.  Not severe.  But, alas, almost all the doctors Emma has seen seems to mention this quite casually so this is not a knock on this doctor at all.  Still....ouch.

The doctor looked at the Xrays we brought and agreed that Emma should get the adductor release surgery.  He didn't agree with the hamstring lengthening.  He had good reasons for it and I was glad to hear them.  His main reason for not recommending it is that since Emma isn't walking she most likely won't be helped by the procedure and it's likely the muscle will regrow pretty much the same as it already is and that since he can straighten her leg without much trouble it probably isn't needed just yet.  Truth be told I wasn't sold on that portion of the surgery which is one reason why we sought a second opinion.  He also told us about casting vs. not casting for the adductor release surgery.  Emma's main dr. doesn't cast.  This doctor does cast - he said it's a 2 week casting and mostly for pain management.  He didn't cast in the past but it was too painful for his patients so her believes casting is better for the child and avoids having them chock full of pain killers for a long period of time.  He did say, though, that not casting is a bit in vogue right now and so just as many doctors likely cast as do not cast.  I didn't know that so it was good to find out.  He also said cutting and surgery are very in vogue, too, with lots of doctors want to go straight to cutting.  Hmmm....I had a feeling about that.  If you go to a surgeon their likely gut reaction will be to cut.  That is a reason we are bringing a Physiatrist onto Emma's team.  Emma sees her in December and I'm looking forward to the appointment since she comes very highly recommended from other local parents.  Plus her name is Maura, which for some reason made me smile when I found that out ;-)

Where do we go from here?  Well, we have the physiatrist appointment in December.  We have a family consult for the surgery with Emma's original doctor in early January where we will discuss the one procedure vs. the two and casting vs. not casting along with expected time to recover, etc.  We have the surgery scheduled for late January and exactly what procedure(s) are done at that time will be dependent on what we decide at the family consult.

If anyone reading this has been there, done that and has any input on casting vs. not casting and adductor + hamstring vs. only adductor lengthening please leave a comment below.  I'd love to hear your experience.

To cut or not to cut?

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."

- Author Unknown

Emma lives this quote.  I have never met a child that is happier or who can find fun in the mundane more than Emma.  The other day we were at the store and I saw a shirt that says "Smiles all the Time" and so I had to buy it for Emma.  The child radiates sunshine.  There is an amazing glow that just radiates from her - it's something that most people notice and never forget about her.  Even if they have only met Emma once I'm often reminded by them that the thing the most remember and associate with Emma is her amazing smile and glow.

Yesterday we visited Emma's orthopedic surgeon for our 6 month visit.  We thought most of our follow-up visits with her various specialists are now more "routine" and that things with Emma were going in the right direction like I discussed on this post.  We were wrong.  The x-ray they took showed her right hip is 50% out of the socket, likely a result from her recent growth spurt.  They looked at her hight changes from the last 6 months and couldn't believe how much she has grown.  I can.  I move her around all day, every day and my girl is LONG and, thank goodness, lean.  Supermodel material for sure!  But I'm not about to let that industry get their hands on my little angel.

Anyway, I digress.  A long conversation about the x-ray results, Emma's range of motion, etc. followed.  Her doctor wants to do an adductor release (and hamstring release surgery as long as she's under) on her within the next 3 months.  Time is important here because if we don't get it in time then Emma will face a hard, painful surgery on her hips.  There is still a chance Emma would need the painful bone surgery even after having the adductor release surgery but it would buy us a lot of time.    The adductor release surgery is a more minor (not that anything is minor when talking about your child having surgery) procedure with a much shorter recovery and much less pain.  He said on a scale of 1-10 with 10 being the hardest surgery the bone surgery is about a 7-8 and the adductor release surgery is a 0.1.  I likened it to ear tube surgery vs. cochlear implant surgery and he thought that was a great analogy.

Emma's doctor is really good and patient.  He took the time to talk to me as long as I needed - which is probably why he often is running very behind in his appointments because he takes his time with patients and families.  I appreciate that quality in a doctor.  I asked so many questions because, of course, this was the one visit with the orthopedic surgeon Chris didn't attend.  You know....because they are routine at this point and we didn't expect it to be an interesting visit.  Her dr. is 100% sure this is the correct surgery for Emma.  I asked about a second opinion and he said all the dr's at that hospital would give the same opinion as him and that we should be careful who we consult with and make sure it is a dr. very familiar with children with spastic quad CP.  Our hospital, DuPont Children's Hospital, has the largest practice for children with spastic quad CP in the country and so they have a large base of experience to draw from when making recommendations.  They do lots of research, they have leading doctors.  They are a top hospital and the quality of care Emma receives is amazing.  We really do love it there but whenever someone talks about putting my child under anesthesia and then cutting her muscles I think it is good to consider a second opinion.

When the doctor was drawing what he would do during the surgery Emma was very interested.  She thought it was all SOOOOOOO funny.  She couldn't stop laughing.  There isn't much that gets my girl sad besides bedtime and getting left behind when someone walks outside.

I took all the information from the doctor and shared it with Chris.  I also sent emails to some friends with children older than Emma to get their opinion on the surgery.  This is a very common surgery for children with CP so it's highly likely everyone we know with CP that is older than Emma either had the surgery or considered it at some point in time.  I also posted this to our CPMoms yahoo group for input.  And I came up with another question for the dr., emailed it to him and had a response from him in my mailbox this morning.  We're not sure what we'll decide, but it's likely we'll pursue the surgery because we sure would like to avoid the major surgery if we can.

Last night I took a long, hot shower.  There is just something about water cascading over my head that instantly relaxes me and that is exactly what I needed.

It's been a long week!  Last week at a "routine" eye exam the dr. told me that Emma has cortical vision impairment.  She is highly functioning with it but might need some accommodations on print size as she progresses in school and help with spacial perception as she continues to work on her power chair.  We'll deal with this as necessary just like we do everything else.

And Emma will be our guide to helping us remember - lest we forget - that we have a thousand reasons to smile.

World Cerebral Palsy Awareness Day

Today is the first ever World Cerebral Palsy Awareness Day!  I'm so happy that worldwide people are coming together to talk about CP because there are over 17 million people worldwide effected with CP and a further 350 million people closely connected to a child or adult with CP.  To put that number into perspective there are just under 315 million people in the USA so there are more people in the world connected to a child or adult with CP than there are people in the entire US!

Emma and our entire family are included in these figures.

Emma has CP and she works it well!  Even though it effects all her motor skills from sitting, standing, walking, talking, eating, it DOES NOT effect her smiling or laughing skills.  Boy, can this girl smile and laugh like no other!  Having a moderate to severe form of CP means that Emma is usually going through life with a partner by her side to help her with mostly all daily activities and this works well for her because she does not like to be left alone at all.

CP has brought so many amazing people into our lives, allowed me to love deeper than I ever imagined  and seeing Emma work to achieve milestones so many take for granted has inspired me to work harder and be a better person.  Today I ask people to look a bit beyond the disability and see how Emma and others like her are changing the world for the better!

The theme for this year is "Change my world in 1 minute."  So, I'll take my minute to say all offers to babysit both girls so we can get a few hours off for a date will be immediately accepted :-)

Good News: Hips!

One of the specialists Emma sees on a regular basis is an orthopedic surgeon.  Since Emma isn't standing or walking like a typical 3 year old and she has high tone in her legs there has been some concern about her right hip not sitting in the hip socket correctly.  Typically once it starts to get 20% out of the socket the doctors start to get concerned.  Emma's has been out as much as 38% out.  At her visit 6 months ago she was out 33% and the doctor gave us some initial discussion/indications about possible surgery in her future.  He also gave us certain stretches to do that could help her hip go back into place or - at the very least - help prevent it from pulling out further.  Chris and I were less than thrilled about that discussion and left with a renewed interest in adding stretches to Emma's daily routine.

Yesterday Emma had her 6 month follow-up and the x-ray showed that she is down to 27% out.  Yeah!  We are headed in the right direction and not discussing surgery at this time.  The doctor even mentioned that at her 6 month folow-up he will not need an x-ray unless his exam on her gives him concern and, if that happens, she'll go down the hall and have one done.  It is soooo nice to leave a doctor's appointment with good news for a change!

I have a feeling Emma's love of commando crawling and walking in her gait trainer are helping her make great gains with her hips.  Chris is also focused on stretching Emma each night as part of their routine and we will continue to make this a priority so we can keep surgery at bay.  We took the last two month off from horse riding because of the cold and snowy weather and hope to start Emma riding again in May.  Riding the horse helps give her legs an extended stretch and movement while she is enjoying a ride around the farm.  I've noticed that Emma's trunk has gotten weaker lately and mentioned this to the doctor.  He said the horse riding should help with her trunk muscles so I'm wondering if the break in riding is the reason for her "floppy" trunk lately.  I'm not sure if its the sudden change to warm weather or not, but I'm looking forward to seeing if starting up riding again will help her control her trunk muscles better.

Cerebral Palsy Awareness Day

Today is officially Cerebral Palsy Awareness Day!

I wanted to do something special for today.  I had thought about pulling together some facts and information for you, maybe even posing a video.  Then I saw this video on YouTube and thought it is the perfect video for today.  It's three minutes long and I love it if you would take the time to watch it - it would me a lot to our family.



And, if you take the next step to raise awareness for CP funding and research (plus continuing health care coverage!) with your representatives please let me know.  We'll make a short video of Emma saying thank you and blowing kisses and send it to you via email :-)  How could anyone resist that????!!!!