Pre-Op Evaluation

Today we went and saw Sara's orthopedic oncologist to discuss fixing her left hip (her good leg).  Sara's left hip is close to dislocating, and it needs to be corrected in two different ways.

First off, he will have to cut off the top of her femur and reattach it at a new angle so that the ball stays in the center of the socket.  Then secondly, he will cut and tighten up the muscles that reside around the socket to keep the ball of the femur in the socket once it is all healed up and she begins using her leg to walk and get around.  The surgery will last for about 5 hours.

This is a major step in helping Sara to become more mobile and independent.  But unfortunately, this isn't the last.  There is no telling how long Sara's hip will stay in the socket even once the surgery is done.  Because she is so young and still growing, at some point, probably about a year from now, we will have to go in and remove the hardware that will be placed during the surgery.  Also, because she is growing there is no guarantees her hip won't become in need of more correction later.

But to do nothing isn't an option, so we must act and hope that Sara will get several years of good mobility out of this surgery.  It seems big now...a 5 hour procedure, a couple days in the hospital, 8 weeks of spice cast (from ribs to both ankles), building a ramp on the front of the house for a special wheelchair while she's in the cast, and somehow figuring out how to manage it all at home and at school.  Not to mention Christmas is the week after her surgery.

Its scary to think about my baby going under the knife, but it has to be done and its in her best interest. Sara has a great support system, as do I, to help her through this (what seems like now) immense task.  It showed today with all the support she had at this appointment.  Everyone who will be dealing directly with Sara's care, either daily or every few days, was present to listen to what is going to happen and to ask questions so they know how best to help.  My roommate was there because she will be living with us and knows that her daily involvement will be crucial to a smooth event.  My boyfriend was there because he will be building a ramp outside my house, and also coming over often to help us care for Sara when my roommate and I have reached our breaking point.  My dad was also present to ask questions and make sure he understands the surgery because he knows that I will not be able to really hear anything the doctor says right after surgery because I'll just want to see my baby.

So with all that said, here's the important info I'm sure most of you came to get.  Sara's surgery will be on Dec. 19, 2012 at 10am.  Let us all pray it goes well!

New...Picture Fridays!

Several of you have stated that I don't post enough, especially when it comes to pictures. I've given it a lot of thought, and to address your complaints requests I've decided to take up Picture Fridays!  Every Friday I will post one or two of the funniest, cutest, or just plain best pics from the week that I have taken.
 

 

Enjoy!

 

Exciting News!

I was accepted into a graduate program!  I'm going back to school, and oh so very excited about it!!

I will be attending the Management Program at Regis University in Denver.  I will be working towards a Master of Science degree in Organizational Leadership.  I won't be starting classes until next year, but that gives me time to look for some scholarships and grants to help offset some of the expenses.  As many of us know, school is very expensive!

I can't wait to get back to it.  I love to learn, and I'm actually looking forward to homework and long hours at night reading text books.  I've always wanted to get my graduate degree, and now I finally can!  My plan at this point is to graduate in May of 2014!

That Magical Season

Recently over the last couple weeks, the weather has been changing.  Its colder in the mornings now, and most mornings its wet because it has rained over night.  But by 10am it begins to warm up, and highs are in the mid 70's.  Getting up in the dark is hard, but eating dinner when its dark isn't any better.  Also, the leaves are changing and its so very pretty!

It must be fall!!  And that means one more thing, I can finally say the C word without people completely flipping out on me.  Instead they just give me the look of death that says, "Don't remind me!"

Christmas, Christmas, Christmas!!

You see, I love Christmas!  Best holiday of the year!  And for those of you who aren't keeping track, you only have 11 weeks until its here!

I also love Thanksgiving, and everything else that the holiday season brings each year.  I love to bake, and play in the snow.  (Granted I only love snow when I don't have to drive in it.)  I love to see Sara get excited about the lights on the houses, seeing Santa, writing her letter, and just the wonder she has every year about the entire thing!

This year's holiday season will be filled with even more challenges than before.  Its always been challenging, especially since planning is a nightmare when you have divorced parents, and your child also has parents that are not together.  But this year Sara will have her surgery!  Hopefully one that will change her life for the better.  And she will be in this awful cast for Christmas!  That just means I have to work even harder this year to make it super special for her, and that's exactly what I plan to do. 

No matter how much work it takes, I still can't wait!  The look on her face is more than enough reward.  Its going to be awesome!

NF in the News

I have mixed emotions about this news article.  There are tons of them on the web about this story, but here is a link to one.

Sperm Donor Passes Genetic Disease to Babies

This article says its 5 babies, other ones say 9.  But that isn't what matters.

Here's how I see it...

I'm glad that NF is in the news, but when they report about it could they get the facts right?  Lots of these articles don't list correct information about the disease or any information about it at all other than its name.  I just wish that just once when I see an article mentioning NF it had correct info, and a decent amount of it.  Listing 3 symptoms of the disease doesn't even come close to telling people what it is or what it can do.  Want to know what some of the symptoms and facts really are?  Check out this list on the CTF website.
NF Fact Sheet

I love how they call it rare.  Its not that rare people!  One out of every 3,000 people are born with it in this country.  And from the CTF website...

"(Neurofibromatosis) ...affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined." 

COMBINED!!!  Yet most people have heard of one or more of those diseases! 
 
And how was the sperm bank suppose to catch this?  My guess is the man probably didn't even know he had it until one of the children his sperm produced was diagnosed.  Testing for NF is not commonly practiced.  You have to ask specifically to have it, and even then its hard to get.  I've been trying to get tested almost since my daughter was diagnosed 4 years ago.  And between difficult insurance and doctors who don't know any thing about it, it has yet to happen.

I feel bad for these parents and children that have to go through this.  But like all of us living in the NF community, I hope they find the strength and support they need to muddle through something that is so misunderstood and difficult to treat.  I wish them the best, and hope that these children are some of the lucky ones who experience few, if any, symptoms.

Ever have one of those days...

I've had a few recently (with no end in sight), and I just tell myself to keep moving forward and to smile.  The good things out number the difficult, but when the difficult one is so large its hard to focus on the great things.  I "stole" this image off a friend's blog, and it pretty much says it all when it comes to particular aspects of my life right now.

To all of you who need a smile today!

Is it really bragging?

Is it true that every parent believes their child to be gifted?  And that every parent brags about their child's strengths?  I know every mother thinks their kid is the cutest, and every parent wants to believe that they have the smartest kid in the class. 

I have been told by more than one person recently that my child may not be as smart as I claim she is.  But at the same time, I have 3 years of testing from the local hospital and now school testing from the beginning of this year to prove that my child is ahead of most children her age.  Knowing where these comments came from, I wonder if there is some kind of jealousy or similar emotion involved.

This comment came about from someone when they asked what was going on in our lives and I told them I had recently filled out the application to get Sara into the GT (gifted and talented) Program for next year.  I got the response of they weren't surprised I would do that cause I was always bragging about how smart she is.  But you asked me what was up!!

Maybe I'm over sensitive about it because I feel like I always have to point out her strengths since most people only see her weaknesses.  Sara is ahead of her class according to testing and her teachers, so is it bragging if its true?  And is it bragging when someone asks you about it?

Maybe I do brag about how smart my little peanut is, but doesn't every parent brag about their child's strength??

Honestly, when it comes down to it I just don't care if people think I'm bragging or not.  I speak the truth as I see it...and as I have been told it is by professionals.  Call it bragging if you want, but you asked!

2012 Denver NF Walk!

I know its taken a me a week to get this post up, and I'm sorry.  There were about 400 pics to sort through, so it took a bit.  But here are the highlights for your viewing pleasure.  It was the best walk yet!

The kid's fun run and carnival!

 Sara receiving the NF Hero Award and the walk!

Our team photo!

 It was a great day, and we raised a lot of money to support NF research and clinics!  Can't wait to do it again next year!

All the Craziness...

I feel like life never slows down these days!  Every time I get one thing done or under control, I go back to a list that is even longer than it was before I started the last task.  Let me give you a quick recap of the nuttiness these days.

Mostly the things I have been working on either involve Sara's medical status and appts or her school.  No surprises there!  Sara has an appt with her orthopedic oncologist on Oct. 16th to schedule her surgery and do the pre-evaluation. 

Also there is multiple tasks for the NF Walk, which is only 2 days away!  I volunteered for the planning committee this year, and I'm so glad I did.  It was a TON of work, but it was completely worth it.  This is going to be the best walk we've had in Denver yet, and I can't wait to see how it all goes.  I really think we've made some great changes this year that will really bring it all together.

Sara and I also have a roommate, my BFF Kimmy!  She lived with us back in 2010, and moved back in last month.  Its so nice to have her back with us, and its just nice to have someone to talk to, hang out with, and who understands all that is going on with Sara.  She's been on this journey with Sara and I since the moment of Sara's conception.  In all honestly, she's like Sara's second mom.  She parents Sara like I do, and makes sure Sara does all the things she needs to.  She doesn't cut her any slack because Sara has NF.  I trust her completely at all times with my precious little girl, and I thank God so much for bringing her back to us.

Sara is loving school!  She wheels herself out of the classroom at race car pace every day with a huge smile on her face and tells me she had the best day ever!  I'm so glad she loves it so much.  She's at the head of her class, and tested at a level in her assessments last week that would be equal with a child about to finish 1st grade.  Honestly, I can't say I'm surprised by this.  With both Kimmy and I having degrees in elementary education, everything in our house is a teaching opportunity. When Sara asks us which way to go in the store, we never just point and say "that way."  We always tell her we need to go left or right, and ask her if she knows what way that is.  We also make her read the shopping list, help us count things or read labels.  Sometimes I feel bad for Sara.  It must suck living with two teachers...her brain never gets any rest.  LOL!!

Well, for now that's all I've got.  But I promise I will be posting all the days events from the NF Walk next week.  Its going to be super exciting and full of surprises for Sara!

Until then...

Kindergarten!

Today Sara started her educational journey attending her first day of kindergarten!

Sara showed no hesitation as we walked into her classroom.  It was full to the max with parents and kids (there's 27 students in Sara's class), so I carried Sara to her seat since there was no way to maneuver her walker or wheelchair through the crowd.  Once to her seat, Sara started working on her assignment and chatting with the other kids right away. 

Sara's new para (an educational assistant that will be with Sara for the entire day to help her with her physical limitations and medical needs) introduced herself.  Her name is Bridget, and my first impressions of her is that she will work out well.  She asked me if there was anything she needed to know right away since she'd only been hired last week, and I told her that Sara would tell her everything she needed to know to help her....but if something came up I left my cell number with her as well.  Its nice to know that Sara will have someone with her each day to give her that extra support she needs.  She will be instrumental in getting Sara back to school after her surgery.

Here are a couple of pics of my peanut on her first day!  As you can see, she's really excited to be starting school.

Sara at her desk ready to work!

Sara getting to know Bridget.

I can't believe it!  I remember sitting in the hospital holding her in my arms thinking this day was so far away, and now here we are.  Some days it feels like I've only had her home from the hospital for a few months, and then I think about all the testing and hospitalizations and realize how long its really been since the first time I saw her and held her in my arms.

And as I am sad to see this young part of her childhood end, I'm also so excited for this part of her life to begin.  Sara loves school, and its a good thing because she wants to be a doctor when she grows up.  Unlike most kids, her future profession in her adult life never changes.  Most kids her age tell you something different every time you ask them, but not mine.  She is already bound and determined to be a doctor, and I'm in complete support of that.  But that means letting her know how important her education is and pushing her to be the best she can be.  I'm not ready for her to go to school, but she is...and that's what matters.

Why does it go by so fast?    I blinked and here we are, and I will blink again and I will be sending her off to college...probably pre-med no less!  I know that I'm not the only mother who wishes time would stand still, even if only for one extra day.  But time waits for no one, and life must go on....even if we're not ready yet.

Have a great day peanut!  I can't wait to hear all about it!

Urological Check-up

I know Sara had this appt 2 weeks ago, so I'm sorry I didn't post sooner.  Life's been crazy here the last couple weeks, and I just plain forgot.  Thanks to those of you that reminded me!

Luckily, for once, there isn't much to report.  Sara's kidneys are doing fantastic!  They continue to look great and function well.  Her stoma looks pink and healthy, and everything seems to be doing good.

The only other thing that was mentioned was some potty training things.  We're going to try a couple things over the next couple months and see if that's something that's even possible for Sara, which the doctor isn't convinced it is.  We're not doing anything major, just some diet and routine adjustments.

Again, so sorry my update is late! 

CTF Racing4Research Meet'n'Greet

On Saturday Sara and I (and some of the family) got the chance to head over to the local speedway to see the CTF Ford #07 Racing4Research car in action.  We also got to do a meet and greet with the driver and crew before the race.

It was amazing!  Sara hasn't smiled that big since the last time we went to Disney.  She loves racing and was so excited to get to see the "behind the scenes" in pit row.  Being at the race, Sara got her name printed on the side of the car as one of the attending NF Heroes!

Here are some of the amazing pictures taken by the amazing man in my life!  Thanks hunny!

 

 Sara excited to see her name on the car!

Sara tracing her name on the car!

 Sara (and me) with the driver of the #07, Daniel Graeff

The #07 CTF Racing4Research car!

 

 Some qualifying laps!

Group photo!

It was so much fun!  Sara's already asking when we can go again.  And she's refusing to let me wash her now autographed CTF shirt, so I guess I'll just have to buy her a new one at NF Walk in about a month!  

2012 Denver NF Walk

I'm excited to say that this year I've had the chance to be more involved in the event this year.  I was asked to be on the planning committee, and its been lots of fun so far.  Still lots to do before it gets here, but I'm really excited to be able to give extra time to help the event be a success since it is so important to Sara and I.

And again this year, Sara's Striders will be participating as a team!  I'm hoping to gather all the people who joined our team last year, and some new ones as well.  I'd love to see this team grow every year and become just a little bit bigger...and maybe even some day participate in other walks in our area, not just supporting NF.  But I also know that's a lot of time and commitment to ask of people, and I know not everyone wants to be as involved as I am.

Here is our team photo from last year!  It was tons of fun, and I can't wait for us all to do it together again!

The Denver NF Walk will be held on Sept. 9, 2012.  It will be happening at Clement Park in Littleton, CO, and registration/check-in will begin at 2pm.

If you would like to join the team, you can register at 

Sara's Striders.

If you are unable to join us, but would still like to support us, you can donate at Julie and Sara's Donation Page.  All donations are welcome and help us to reach our fund raising goal!

If you don't live in the Denver area, but would still like to support NF by participating in a walk close to you, you can join another walk by going to The Children's Tumor Foundation and clicking on the NF Walk logo.  There are many walks all over the country, and I'm sure there is one close to you.

Thank you to everyone who has supported Sara through this amazing journey!  And thank you for your continued support as we gather together to help raise money to find the answers that Sara, her family, and so many others are so desperately looking for.

Sara's New Medical Report

Yesterday Sara and I spent the day at the hospital doing some routine testing to check how her tumors, and body as a whole, are doing.  Sara was a trooper and did great during her MRI and was good with all her doctors.  As there always is with NF, there was some very good news and some not so good news.

Let's start with the bad news so we can end this post with the something amazing part!

Sara has to have another surgery!!  I'm so bummed, but I'm not surprised.  I've had a feeling this has been coming for a while.  Sara has to have surgery on her left hip...which involves power tools, and has a long recovery.  It will be difficult and take everything we both have to overcome the very long recovery.  But together, and with the support of all those around us, I know we can do it.

The surgery itself will be the scariest part, but also the easy part.  The doctor plans to cut off the top of Sara's femur, realign it at a new angle, and reattach it so that it will finally stay in the socket.  Sounds simple right...and that part is. 

The hard part comes afterward.  It involves a spica cast (and I know any one of you who knows what that is is cringing) for 6-8 weeks.  For those of you who don't know what that is, its a cast that will extend all the way around her body from the bottom of her ribs all the way down both legs.  It will make her completely immobile, and its going to be awful.  She will have to ride around in a specially designed wheelchair, and live in a reclined position for the entire time.  It also involves a special seat in the car any time we go anywhere.  And then there is all that PT afterward to get her up and moving again!

At this point, the plan is to wait till the end of the school year and do the surgery over the summer.  This is to avoid missing school.  We will x-ray Sara's hip again in early Dec. to see if there is any change.  If there is, we will be forced to move her surgery up and do it over winter break.  If there isn't, then we will stick with our plan for the end of the school year.

Now on to the good news!!!

After an initial look at her MRI, Sara's tumor shows NO GROWTH!!  Woohoo!!  We still need to wait for the official report from the radiologist, but her oncologist is confident we won't see anything different from last time.  Yea!

We also saw the orthodics team, and they fitted Sara for new shoes.  So we should see something with that in a couple of weeks.  We have to do some trial and error because we are trying to figure out how to get an actual shoe on Sara's right (larger) foot since she will now be attending school.  I'm sure he will come up with something that will work great!

And the really big news is that Sara has gotten her new walker now!  She is so very excited, and had the biggest grin on her face when we went to pick it up yesterday.  I thought you all might want to see it for yourself. 

Sara's new walker is much different than her last.  She pulls it behind her, and it makes it MUCH easier for her to steer.  It also takes less energy to move since it has four wheels, instead of two with the peg legs.  And best of all, it has a fold down seat she can use when she gets tired.  It takes Sara about 30% more energy to move around than it does a "normal" child.  So she becomes tired quickly.  She's sitting on the little seat in this photo.  It isn't for sitting as much as its just for leaning on to take a small break.  It has black paint with sparkles in it, and I heard Sara telling the kids at daycare this morning as I was walking out not to get to close cause she didn't want them to scratch it.  LOL!!

It was a crazy day, full of ups and downs, but it was nice to end on a good note with that beautiful smile!

It's Been Two Years!

I can't believe it!  And my guess is most of you who know Sara can't believe it either.

It's been two years to the day since Sara was released from the hospital the last time!  Can you believe that none of us have chatted with the nurses, ate hospital food, moved IV tubing from the pole on the bed to the pole on the little red wagon, or slept on that uncomfortable couch in those rooms for two years??  The phrase "Sara's in the ER again" hasn't appeared in anyone's text message list.  I haven't had to make that phone call to our family.

As I think about today, and what it might mean, I can't help but go back to the beginnings of this blog.  Oh, how far Sara has come since I started this blog so long ago!  When I started this blog, life was scary and unpredictable.  Its still pretty scary, and fairly unpredictable, but for completely different reasons...just the usual reasons life throws at all of us.

Thanks to an amazing team of doctors that never gave up, and an amazing hospital with the best nurses anywhere, here is a short list of just some of the things Sara has accomplished because she has been healthy enough to do so in the last 2 years.

• She's attended 2 years of preschool, and is at the head of her class.
• She's made amazing friends who love her at school.
• She's been able to travel to Disneyland and Disney World thanks to the support of our family and the Kids Wish Network.  Thank you!
• She's inspired the people around her to be better.
• She's always got a smile to share and some kind words when someone's feeling down.
• She's learned so many things that I can't name them all. Things like reading, writing, math, and what NF is and how it affects her.
• She's received a bike she can pedal with her hands from Kids Mobility Network.  Thank you!
• She's celebrated 2 more birthdays!
• She's learned to swallow pills, making taking meds and traveling much easier.
• She's learned how to care for her urostomy and how it works.
• She's moved out of a baby bed and into a big girl bed.
• She talks about her future and says she wants to be a doctor when she grows up so she can help other kids like her get better.
• And now Sara is currently attending PT to learn to walk with her walker! 

I'm constantly amazed at all the things Sara is able to do, or at least willing to try to do...even if someone has said she can't.  Sara is an angel from heaven, I feel so blessed to be her mother.  So much has happened in the last two years, and she's grown so fast.  I can't wait to see what the future holds.

A Difficult Mother's Day

This weekend was hard.  It was full of stress, tears, hugs, love, laughter, and fun...but still hard!

Saturday marked exactly 5 months since my stepmothers untimely departure from this Earth.  I miss her so much!  To celebrate her, and her most amazing life, we did something we knew she would have loved.  We got together those that mattered most to her, close family and friends, and we went shooting for the day.  My stepmother was a competitive shooter and avid firearms collector, so it seemed appropriate to spend the day doing something she loved so much.

At the end of the day, we released balloons.  Each had a note tied on it to her, and it was a very tearful moment for many of us.  We never had a funeral or memorial service for her because that is not what she wanted, but the problem with that is none of us had a chance to really say goodbye to her.  This was that chance!  There were many tears from many people as we all stood and watched the balloons float up to her.  I know she's up there somewhere, watching each of us (and even helping out on occasion).  She helped us out that day by parting the clouds to let the sun through for just a little bit...and at the perfect time in the day too.

And of course that makes today hard too!  Mother's day...I would have called her today.  She wasn't my biological mother, but she still was very much a mother to me at some very important points in my life.  She never had children of her own, but I know she thought of me as her own in many ways.  I miss her!

She reminds me that life is too short!  There isn't a day that goes by that I don't think of her.  Something reminds me of her every time I turn around.  I see the pain in my dad's face, and I realize how happy she really made him...and that happiness is gone, never to return.  It breaks my heart to see because I know when she died she took a piece of my dad with her.  He isn't the same man, and he never will be.  But I will never be the same person either.  My stepmother was one of those rare flowers that made an impact on everyone she ever met.  She was incredibly kind, amazingly thoughtful, and continually supportive.  She can never be replaced!

And along with my dad, I grieve for her mother as well.  Another amazing woman that came into my life at the perfect time.  I can't imagine how she must feel on this Mother's day.  I wish that I could take her pain away, even if just for this one day.  It is the only gift I can't give that I wish I could.  It hurts me to not be able to do it for her and for my dad too.

Happy Mother's Day to all the Moms!  I hope your day is filled with love!

Preschool Graduation Pictures

A couple weeks ago was school picture day.  They took their class photos, personal school photos, and graduation photos of the kids moving on to kindergarten. 

Here is Sara's graduation picture from preschool!  Her personal school photos will probably be another week or so.

May is NF Awareness Month!

Help me to bring awareness to all those in our communities about NF!  The more people who know about this disease, the more people there are to help us find a cure.

Here is a list of things you can do to help bring awareness.  This list comes from the CTF website.

1. Change your social media profile pictures to a photo of the Children's Tumor Foundation "End NF" ribbon, and encourage your friends and family to do so as well. The ribbon logo can be downloaded from http://www.facebook.com/childrenstmrfdn.
2. Wear blue and green on May 17th which is World NF Day.
3. Wear the Children's Tumor Foundation blue and green NF awareness wristband all month.  Wristbands can be obtained by emailing Rosa Perez at rperez@ctf.org.
4. Participate in or volunteer at an NF Walk or other community event organized by the Children's Tumor Foundation. Please go to www.ctf.org and click on "Local Events" or the "NF Walk" logo to find opportunities in your area.
5. Create a fundraiser to benefit NF research. For example: Approach your Human Resources department about letting employees wear jeans to work if they make a $5.00 donation to the Children's Tumor Foundation, Host a bake sale or lemonade stand, or Ask a local restaurant or bar to donate part of their proceeds on a particular night.
6. Put the "About NF" flyer up in your community (in your workplace, at the public library, in coffee shops, on civic center bulletin boards, in grocery stores, etc.) and pass them out to friends and coworkers. The flyer can be downloaded from http://www.ctf.org/images/pdf/flyeraboutnf.pdf.
7. Tie blue and green ribbons around your car antenna or a tree in your front yard.
8. Have some fun! Wear one blue sock and one green sock, and exchange socks with a friend or family member so they can do the same as well.
9. Volunteer at a hospital or other community event.
10. Share links to information about NF on Facebook and Twitter.

I hope that some of you will take just a couple moments and do just 2 or 3 things on this list to help educate those around you.  Knowledge is power....and it is the power we need to find a cure!

If you do get a chance to do some of the things listed above, or get a chance to do your own things, please leave me a comment.  I'd love to hear what everyone is doing to bring awareness to their community!

PT Evaluation

Sara's first PT appt went well!  The therapist said that her form for walking is very good.  She said she believes Sara just needs some stamina training and a new walker that will work better for her style and she'll be well on her way to being out of her chair most of the time.

We both agreed that we don't see Sara getting rid of her chair completely for several years yet, if ever, but that really will be up to Sara.  In all actuality, Sara will always need a chair to do any kind of long distances...like going to the zoo or on vacation.

Sara will attend PT once a week all summer and then we will assess again where she is at and the progress she's made.  Hopefully it won't take too long to get her new walker.  We meet with the equipment specialist on May 15th, but that doesn't mean much since we have to wait on insurance to decide if they will pay for it (which, of course, takes "forever").

As soon as the new walker is here, I will be posting pictures I'm sure.  And hopefully, video of Sara walking with it so we can get a little before, during, and after going on for all of you to see.

Returning to PT with Big Goals

Sara told me a couple weeks ago she didn't want to be in her wheelchair any more and wanted to learn to walk!  Woohoo!!  This came right after a kid in her preschool class told her she was still a baby cause she crawled.  We've not pushed Sara to walk before now because she had no interest.  She was perfectly happy in her chair at school, and learning to walk is something Sara needs to want for herself before she will be successful at it.  But some times peer pressure isn't a bad thing.

No matter what the driving force is, I always want to support Sara in her goals.  But honestly, I wasn't sure this one would last.  I figured the pain of the kid's comment would fade after a couple days and she would go back to liking her chair.  That didn't happen! 

So I emailed her therapist to get her on the schedule.  And the first day was tomorrow afternoon, almost 2 weeks after Sara had said she wanted to go.  I wondered if Sara would lose interested again by then, but she has not. She's super excited about going tomorrow, and has been counting the days on the calendar all week.

I hope she can maintain this positive and motivated attitude.  She's going to need it because this is going to be hard.  Of course, myself and the therapist will support Sara every way she can to complete this goal.  Sara told me she wants to be walking by the time she starts kindergarten.  That's only about 12 weeks away, so I don't know if its possible.  But if that's what Sara wants, then I will do whatever it takes to try and make that happen.

Good luck peanut!  I know you can do it!