Crunches

Sometimes, we can all use a little help...

And as it turns out, any crunches will do...

I'm still trying to catch up with housework, appointments, cooking, Christmas preparations, etc... as one of the grownups at the HennHouse is down for the count. Two weeks ago Tim broke four metatarsals (one of them shattered) and his big toe during a soccer game. Last week, he had surgery. The surgery was supposed to last 45 minutes. It lasted two hours and 15 minutes instead. He has a job that requires driving. Per doctor's orders, he isn't to drive for six weeks. Unfortunately he has already exhausted his sick leave due to Esther-Faith's hospitalization (and recovery) earlier this year. 

It might be a light Christmas at the HennHouse.

BUT....

As Esther-Faith watches her daddy use his crunches, she is much more willing to try her crunches. She watches him get up, and she tries it. She watches him navigate small spaces, and she is more confident in her ability to get where she needs to go. 

In fact, when he first got his crunches, she insisted on showing him how to use them. 

It's adorable. 

And magnificent.

And hopeful.

Even if having Tim down for the count is stressful, it may be worth it if she gains the confidence she needs to continue developing her crunch skills.

by Karin. 

(from the HennHouse)

Finding Gratitude

Time seems to slip through my hands sometimes. I missed my post last Saturday and couldn't figure out where the day went. I do that sometimes....especially when I am feeling stressed. When I am in this mode, its all about survival in a way. Sometimes it is just making it from sun up to sun down.

When I realized that days were getting by me, I had to stop myself. I literally had to say out loud....STOP....BREATH....and RE-EVALUATE. Kinda like the stop, drop and roll saying we all learned in Kindergarten from the fire man who came to teach us about fire safety. I have learned this week that there is power in those words.

Spina Bifida does not take a Holiday. I hope that my thoughts do not come across as "complaining" in any way as I attempt to express my feelings.

On Thanksgiving morning, I was still at work. I was on my run and was scheduled to arrive home at around 7:30 am. My husband was going to put the Turkey in the oven for me around 7:00 am. I had spent two days prior preparing as much as I could because I knew that I would be really tired on Thanksgiving Day. My mind was filled with all kinds of thoughts as I was driving. I was thinking of the baby I had lost on Thanksgiving morning several years ago. I was thinking about Madilyn. I was hoping she was sleeping peacefully. When I left for work around 11:00 pm the night before she was not feeling well. I was thinking about her broken foot and the conversation I had to have with her Neurosurgeon. I was reviewing her upcoming appointments for her MRI on Dec 6th and her next appointment with our Orthopedic Surgeon on Dec 9th. Then I was troubled that she would miss all the fun stuff at school in the month of December. I had promised her that she would not miss a thing this year...... I was thinking about how frustrated I was with Urology. Then.....all my thoughts stopped.

Me and my car were up on its right side in a ditch. The wheels on the left side where up in the air. I am not sure what actually happened. I was perfectly fine. My car just neatly slide in the ditch and it was fine. Without boring you with all those details, I will say this. I was only delayed about an hour and a half getting home and I was sooo embarrassed by the entire event.

Now, what did I learn......

STOP, BREATH and RE-EVALUATE. The entire night I was so consumed with everything that was going wrong. I was also fretting that it is the Holidays and why does Madilyn have to deal with this stuff right now. I was probably just overly tired because this in not my normal train of thought but my experience of hanging in the air in my car brought me back to my center.

As I sat, waiting for the wrecker, my boss and a surprise visit from a firetruck and 4 police cars, I started counting blessings.

I am grateful for those who love and care from my Madilyn. I am grateful for phone calls that get returned and appointments that get scheduled quickly when things arise. I am grateful for the skillful hands of her surgeons that have been able to preserve function and have been able to make her life better when function has been damaged.

I am grateful for Madilyn's smile. I am grateful for my two older children, Berkley and Tyler, who patiently endure the up and downs of Madilyn's medical challenges.

I am grateful for my husband...who quietly stands by my side and holds me up when I get so rattled. I am grateful for him putting my turkey in the oven on Thanksgiving morning when I was in a ditch. I am grateful for his faith when mine is weak.

My list goes on and on..... By the time everyone arrived on the scene I was smiling and grateful for the blessing of my life.

No Spina Bifida does not take a vacation during the holidays. But, after I stopped and took a deep breath, I realized that we can have a wonderful holiday season not matter what comes our way. This was something I already new. But, I somehow I had lost sight of.

We had the most wonderful Thanksgiving ever. Our family arrived from out of town and our home was filled with love. I found my center and thanked the Lord above for his safe keeping.

May the blessing of gratitude fill your home during this most wonderful time of the year!
Best Wishes,
Jill aka....Madilyn's Mom

And the winner is...

AND THE WINNER OF THE BEAUTIFUL HEADWRAP BY LITTLE PENELOPE LANE

IS

COLLEEN (from choo choos and TuTus)

Thank you all for entering!! Remember even if you dont win You are supporting a fellow friend/mommy. Putting yourself and your business out there is a big step and its wonderful to see posts and compliments and whatnot out there on the web! Thank you for supporting the blog, and Little Penelope Lane. Make sure you go check her site out on facebook!!

One day at a time

It's been a super busy week at the HennHouse.

More busy than usual... as the husband had a "mishap" at soccer this week.

That "mishap" resulted in a night-long ER visit and three broken bones in his foot.

Those three little broken bones have kept him off his feet. Literally. He's not been able bear weight, drive, or do any of the routine medical care for Esther-Faith.

Umm... I was feeling a little overwhelmed.

One thing we do at the HennHouse though, is try to see the humor in each adventure. Or FIND the humor.

For example, I find it HILARIOUS that Tim was in so much pain the second night of this adventure that he LITERALLY pushed me off the bed. As in, onto the floor.

Yeah.

I've been sleeping on Esther-Faith's floor the last few nights. Not well. But at least, I remain in the same place where I went to sleep.

And, I find it HYSTERICAL that even though she is not remiss to remind us how tired she is of soccer, we find her in her brother's old cleats shouting out the front door at the other brother who is practicing his skills, or sleeping snuggled up with a stuffed soccer ball.

So, we'll see the surgeon this morning about Tim's foot. And in the meantime, we will take it one day at a time. And we'll try to laugh through the added stress and see the humor through the pain.

by Karin (at the HennHouse)

A letter from you

Picture something with me.

You are sitting in your living room drinking your morning coffee, relaxing on your couch. (I know we are dreaming arent we!!) All of a sudden you hear a knock at your door. (do you hear the knock?) You open the door to see a woman with fear, uncertainty and every other emotion you can imagine in her eyes. You look down and notice her very pregnant belly. You welcome her into your home and she sits across from you in your living room on your couch. Her story begins. She has just found out that her baby that she is carrying has Spina Bifida. She doesnt know the details, the level or really any of the medical terms. But she knows the fear. She is a stranger to you, but she's just become your friend.

What would you say to her? If you had this moment with every mommy who came across the diagnosis of Spina Bifida what would you want to say? What would you share?

If you noticed on the top of our page Joanna has done an amazing job with different tabs. There is one tab called, "Joining the Journey." This tab is for that mommy. The mommy who might not be able to sit in your living room, but she's on her computer googling and trying to find anything she can possibly find. Maybe she'll find us. What would you want to say to her? If you are willing please write a brief letter 1 - 3 paragraphs long of what you would say. It doesnt have to eloquent, It doesnt even have to be spell checked. : ) But Id love for this tab to be filled with your personal words. If you are willing please send me a message on facebook with your letter or email it to me at kari.leann@hotmail.com

We are a message of hope. I want our message to be clear. I want it to be OUR message not just mine!

Thank you to all of you who I know will undoubtly poor your heart into this.

Kari

ps dont forget to scroll down and support by joining in on the giveaway!

GIVEAWAY TIME!!!!

SO its that time of year where we all stress about what to get for who. How to pay for what we got for who?And if the who will actually like what we got. STRESS!!

So why not get an amazing gift for FREE!!

As someone who handmakes things I totally understand the work and beauty behind things that arent created in wal-mart facilities and whatnot.

This amazingly beautiful headwrap is created by our very own friend Sarah Hull from Little Penelope Lane

I love them!! I love all of her stuff and want to order a little of everything! The great thing is that these can be for mommy's, daughters, aunts, cousins, therapists. You name it!! You could finish half your Christmas shopping!

Here's a basic description of the product

These easy to wear hair wraps by Penelope Lane are perfect for all ages! One size fits all, as comfortable cotton fabric adorned with two flowers simply tie at the end to fit your comfort level!

So I know you are all dying to know How do I enter!!?? Well the same way you usually enter on here!

There are a couple different ways.

1. Post a link to the giveaway on your blog

2. post a link to the giveaway on your facebook

then after you do that leave a comment about why you'd like to win this hairwrap!

YOU HAVE FROM RIGHT NOW TO 24 of November to ENTER!

A special thanks to Sarah hull for offering her handcrafted talents to us for this giveaway!

a little challenge

Frequently while I am checking out at a store, or eating in a restaurant I am asked about Carson ( guess he's cute not to get attention) Always, you get the typical baby questions. Age, weight, diet, and then milestones. Oh the milestone part. Here are a few examples....

"Oh, he must just be getting into everything then as he crawls around"

" When did he start crawling?"

" Is'nt so much nicer now that he can crawl around."

And now that he has turned the big one, the questions are going towards walking.

Today, while at Target the clerk who also had a near one year old boy asked me if he had started walking... hers was close.

I quickly answered her "No. not yet, he has spina bifida so were just not quite there." She was obviously curious about it, and wanted to know more.... the door was wide open... and I changed the subject. I had the perfect opportunity and I didn't and grrr am I dissapointed with myself. Now she may go home and google it and become misinformed.

Sometimes these questions and moments are hard. They strike chords in our heart that can bring tears. But ladies, we have an opportunity in our children to help others. To spread awareness. To encourage. Our kids are miracles... Our kids are blessings... Our kids have spina bifida. Let's not hide that, let's not pass up opportunities.

I challenge you this week to somehow tell at least one person what spina bifida is. The truth about it.

Remember we are REDEFINING.

Taking care of YOU

Kari used to write a regular series called "Taking care of YOU" where she gives advice and tips about taking care of yourself.

You can see some past posts here and here and here.

I thought of Kari and the "Taking care of YOU" series today as I was cathing my daughter in a too small bathroom stall at the outlet malls. We had been waiting for the lone disability access stall for more than 15 minutes as patrons who had too many packages for a small stall used the disability stall, and then I decided we would try a smaller stall.

Esther-Faith was a trooper in the truest sense of the word. She transferred out of her wheelchair--clinging to me--and into the bathroom because there was no space in a small stall for a wheelchair. We wrestled out of one KAFO and half of the other, tucked her dress up so it wouldn't fall into the toilet, tugged and pulled at her pull-up and tights, and balanced her over the pot.

Just as I squated in front of her to provide assistance, I realized, I really had to use the bathroom myself. I mean I REALLY had to go. I should have gone first.

It was a really uncomfortable five minutes as she cathed, tugged and pulled the clothes back on, wrestled back into the KAFOs and shoes with no space to do so, and switched places so mama could do what she should have done first.

There is merit in what the airline flight attendant says about getting your own air mask on first so you can be the best help to your child. The same goes with toileting. Take care of your own needs. Go first.

By Karin

(from the HennHouse)

A Case of Second Guessing

In September Madilyn had appointments at the Spina Bifida Clinic. We had waited almost two months to get her in to see everyone. I had lots of concerns about her that day and was well prepared. I gave voice to each one and eagerly awaited the responses.

Madilyn had been falling down a lot. She even started falling down our stairs at home. Her foot was more swollen than usual and her Achilles tendon was extremely tight once again. Since Madilyn can not feel her right foot, she can injure it and not know.

So, when Orthopedics came in to evaluate her....they basically blew all of my concerns off. (Side note: New Doctor in Clinic that we had never seen before and I don't think he bothered to read her chart!) I had never had that happen before. I was so frustrated when I left that day....especially because I was told that she was just a clumsy kid! I knew better. Madilyn has better balance than anyone I know because she learned to stand on a foot she can't feel and it is the same foot that she can ride a scooter on. The funny thing is, she never uses the foot she can feel!

My confidence in my observations was shaken that day. I only voice concerns when I know something is off. After that visit, I watched a decline in Madilyn's foot. I battled with the voices in my head.....call her regular Orthopedic Doctor......not call him. This scenario played out for several weeks. Finally I called. We had to wait to see him but I didn't care. I just wanted him to see her foot and leg. If he told me that she was clumsy, then I would accept it and move on.

Thursday was the day we were to meet with Dr. Busch, who happens to be amazing. Right before I was to head out the door to pick up Madilyn at school, his office called. The X-ray machine was down and he would have to reschedule. I was so frustrated. I said ok and they reschedule for next week. But, after I hung up the phone, I started crying. I couldn't stop crying. I had that feeling come over me that said.....CALL THEM BACK NOW! I did and headed to another location to get that X-ray.

Lets just say...it was bad. Very Bad. Two other surgeons looked at the X-rays and couldn't believe what they saw.
Madilyn is sporting a pink cast that has beautiful glitter applied to it. We will see her Surgeon on December 6th to determine how he is going to deal with her foot.

What did I learn from all of this? Trust yourself Momma. You know Madilyn. You have watched her from the time she was born. If you are concerned then trust yourself. If all avenues have been explored and things are determined to be ok, then that is ok. No harm done. If you are right........well, need I say more.

We've got about 27 members on our flickr group and some posts!! I love seeing all the pictures!!

Make sure you pop on over and check them out and dont forget to leave a comment on your favorites

Hopefully there will be some flyers and advertising going on soon for our next order which will actually start sometime next week. The shirts WILL NOT BE ORDER TILL THE FIRST WEEK IN DECEMEBER THOUGH! : )

And this time we are going to make it a little competition. Leigh and I talked and we decided that the national SBA really probably gets quite a bit of LARGE donations but the little chapters dont. : ( So this time we will be giving the proceeds over to whichever AREA raises the most support with the highest number of orders. So make sure you call your local chapters and let them know!! This will be my final order for some time maybe even a year. : (

thanks you all!!! Your wonderful. Will post the flyers on here when they are done and then you can print them or send the website info to anyone you know.

Kari

Life as we know it

We've traded late night, happy hour dates for early morning mini conferences on raising spiritually healthy special needs kids.

And we wouldn't change a thing...

We've traded Big Ten athletic events for seventh grade basketball tryouts.

And we wouldn't change a thing...

We've traded philosophical discussions about politics and superpowers for tearful heart-to-heart talks about how best to love a child who is incapable of positive attachment.

And we wouldn't change a thing...

We've traded gym memberships for DVD workout programs done at four o'clock in the morning.

We've traded wine tastings for zoo visits.

Night clubs for dance parties in the living room.

Weekend getaways for overtime.

Afternoons of landscaping for weekend soccer tournaments.

Routine gourmet meals for crock pot stew.

Sports cars for dented, scratched SUVs that fit tiny, red wheelchairs and overstuffed schoolbags.

Professional development seminars for IEP meetings.

Long hours working on the climb up the ladder for evenings at home reading children's books.

Big bank accounts for home equity loans.

The fast track for the mommy track.

Walls filled with certificates of accomplishment for a decidedly slower life filled with real accomplishments.

Life as we knew it for life as we know it.

And we wouldn't change a thing.

by Karin.
(from the HennHouse)


note: this is a repost from the HennHouse. 

Cherubs story- Lesson #51

Hi everyone!  I posted this on my blog last night but wanted to add it  here as well. This is a story that was written for me and presented at my baby shower.

Cherubs story- Lesson #51

It was a BUSY day in Heaven! Oh my, so much was happening!  That meant that there were so many things to record in his big book that Angel had been sitting at his desk working steadily for... well... for quite a long while!

All of a sudden, Angel heard a sound he knew very well.  His young friend, Cherub, was coming his way.  Well, not just coming his way, but galloping like a runaway horse AND yelling very loudly at the same time.

"Angel, Angel!"  Cherub slowed to a fast trot as he breathlessly called out "Angel! Angellll! Are you here, Angel!?" 

As Angel stood up to welcome Cherub, Cherub BURST through the door and ran smack-dab into Angel! They rolled across the floor, robes, legs and arms spinning in wide circles.  Before Angel could pull his robes down over his knees, Cherub bounced up beside him, talking very loudly and very fast.

"Angel, God has another baby almost ready to go to earth!  But, Angel, I was watching, and He's not finished with the baby, and He doesn't know it because He's already started His Special Blessing Song.  Oh, Angel, help me tell God the baby isn't done yet! Please, Angel, we have to hurry!  Otherwise God will make a mistake!"

At this remark, Angel knew it was lesson time again.  Yes, indeed, it was time for Lesson #51 about God.

"Come along, Cherub."  said Angel, holding out his hand so that Cherub would lead him directly to where God was at work.  Cherub chattered excitedly about the new baby as they hurried to a special valley known in Heaven as "Babies Place".  As they entered, Someone was singing in a soft voice.

"God your Father loves you so,

Loves you so,

Loves you so.

God your Father loves you so

Now off to earth you go."

Cherub yelled before he even knew what he was doing!  "NO!"  And then, because he was terrified, he hid behind Angel's robes, hoping that God couldn't see him.  But Angel knew Cherub had to learn lesson #51, and so he reached behind his back, caught Cherub's arm and pulled his young friend around to face God.

God was looking right at him!  Then He spoke right to him, "Cherub, do you have something to tell Me?"

Cherub pointed to the baby boy in God's arms and blurted "God, that baby You're holding isn't finished!  Don't send it to its home on earth yet!"

God gazed down at the baby boy and then looked up.  "Yes, Cherub, this little boy is ready to got to his home on earth.  His Mommy's name is Karen and his Daddy's name is Bob.  They are waiting for him right now."

"But, God, his back isn't finished and his feet need a little more work!  Can't you please just finish him before he has to go?"

"Cherub, would you like to hold him?  His name is Carson."

Cherub looked up at Angel who nodded his head yes.  Cherub ran to sit beside God, but God pulled him right onto His lap and put little baby Carson in Cherub's arms!

God began speaking so softly that only Cherub could hear His voice.  "Cherub, you are very young.  Some things are not going to make sense to you right now.  Cherub, do you trust Me?"

As he thought about his answer, Cherub counted the baby's tiny fingers - yes, there were ten.  "Yes, I trust You."

"Will you trust Me even though you don't understand what I am doing in Carson's life?"

Cherub counted Carson's toes - yes, there were ten.  "Yes."

"Carson's mommy and daddy already know that Carson will need some finishing work on his back and feet.  But, Cherub, they know, and they already love him so much, they can hardly wait for his arrival."

Cherub continued touching the baby's soft skin.  "They know he's not finished but they love him anyway? Really God?"

"Yes, really."  God and Cherub looked at each other, and then Cherub hugged God's neck with all his might.  "God, I do trust you.  I'm sorry I yelled at you.  Will you forgive me?"

God hugged Cherub very closely and said in his ear, "You are forgiven, Cherub.  Now, would you like to sing My Special Blessing Song with Me before Carson goes to meet his mommy and daddy?"

As they watched Carson being whooshed over the edge of Heaven, carried in his guardian angel's protective arms, God and Cherub blended their voices in joyous song (of course, Cherub sang the loudest!)

God your Father loves you so,

Loves you so,

Loves you so.

God your Father loves you so

Now off to earth you go!

Later, as Angel and Cherub walked back (well, Angel walked, but Cherub - he ran back and forth looking at all the flowers beside the path), Angel asked Cherub, "What did you learn about God today?"

Although Cherub continued to examine a big yellow sunflower, he answered immediately and loudly, "God never makes mistakes!"

"Cherub, one more thing you might like to hear is a chorus that Carson's mommy and daddy learned as a choir song at their church.  It goes like this:"

God is too wise to be mistaken,

God is too good to be unkind.

For when you don't understand,

When you don't see His plan,

When you can't trace His hand

Trust His heart.

After a rare moment of silence, Cherub asked "Angel, isn't that like Proverbs 3:5 and 6?"

And, of course, it is.

Another Hard Conversation

This afternoon Madilyn and I were playing in the living room. She asked me if I had ever danced the "King Frog" dance. For those of you not familiar with this, it happens to be from Angelina Ballerina. I told her I had never learned that dance.

She them proceeded to put her feet in 5th position and then begin her version of the dance. I cringed every time her right foot planted on the floor. She turned and looked at me and said...."Mom, you are not supposed to frown while I am dancing!". I told her I wasn't frowning but I was just watching her foot. That was not the right answer for a little girl who wants to be a ballerina like her Mom was.

Madilyn has an appointment this week with Dr. Busch. It will be a miracle if her foot is not broken again. She can't feel it. But, it is twice its normal size right now. She has a big swollen ridge on top that leads up to her ankle. Even her compression stocking is not helping with the swelling. No one in the ER would want to handle this so we will wait out the weekend.

After her lovely dance, she told me she wanted to sign up for ballet now. I reminded her that we just can't do that right now and she could talk to Dr. Busch about it. She looked at me and said she would talk to him.

Then, she said...."Mom, Dr. Busch always fixes my leg and foot, so I know he could make me a special ballet shoe so I can be a Ballerina like you Mom".....the faith of a child.

Sometimes I can't make things all better. Sometimes there will be limitations. Sometimes things don't go as we planned. But, sometimes....with a little imagination and ice cream we can have a magical afternoon and dance the "King Frog" dance and all is forgiven and we carry on......until the next time we have this conversation again.

Best Wishes,
Jill

Clarification

First off let me apologize if my last post offended anyone in anyway shape or form. As I am sure most of you realize that is never ever my intention.

Secondly I want to let everyone know that I do not view wheelchairs as a "dead end." The post was never intended to be a bashing session for wheelchairs.

Toby received his first wheelchair around 1 1/2 and we loved that thing. We loved watching him go through stores and get around and play. It was an amazing life line for us.

However, with the progress Toby has made we would see going back to the wheelchair as a step backward because of how well he is walking now. Not that the wheelchair is in and of itself a bad thing just seemed like going backward.

My main goal in writing is to encourage all of us as we face the unknown, therapists, doctors, family members and friends. I look at us as a team raising our children and pushing them to be the very very best.

I see us as truly Redefining Spina Bifida. Not just wearing a shirt that says it. I see us as redefining the charts, the therapists, the things are children are told they cant do. I see us doing those things, breaking the charts, leaving the therapists in awe of our children's strength.

I hope that clarifies a few things for everyone. Again, I love Toby's wheelchair and I will always love his chair. It gave him mobility when nothing else would. The post was never intended to be about a chair but about potential.

Feel free to contact me with any questions or concerns about ANYTHING that shows up on the blog. I always want the chance to clarify or apologize.

anyone sick of this yet?

Anyone sick of hearing me saying, "DUMP YOUR THERAPIST IF YOUR THERAPIST ISNT AMAZING?"

I know. I'm kind of sick of me writing it. But again I am on this topic.

I thought that losing Todd was the end of great therapy as we know it. Seriously, the end. Feel free to pop over and read my post after finding out.

I posted today over at Raising Toby about our amazing therapy appointment. (its worth the read) : )

I wanted to post over here too. Today I had a long hard talk with Toby's therapist Selina regarding outcome charts with Spina Bifida Kids. Now let me preface this with the fact that Selina is actually an expert on Spinal Injuries and travels around the US on the weekends to teach workshops to other therapist. Don't ask me how we ended up with her, except to say that God is really amazing and is taking care of us and Toby.

So really, this post wont make sense if you havent read the other one. So if you dont have the time, go skim it really quickly. : )

So anyways, she basically said that those charts are JUNK!! and she actually teaches that in her workshops. She explained that the problem is that some therapist will stop pushing a child because textbooks tell them that the child has reached its potential or that the child will be a fulltime wheelchair user so to not push to hard for walking. The text books tell them what muscles will be able to be used and what sensations they will have and some therapist will just stop right there.

So after therapy and finding out all of this information. I stopped and thought about all of you. I thought about your children and your therapists and your situations. And I'll be honest, I dont truly know you. I dont really know your children and their therapists But I wanted to just encourage you all to really evaluate what your child is working on and what your child is being pushed to do. I didnt end up with an amazing Selina till Toby was four years old. We didnt get Todd till Toby was 3. That's 3 years of lost time. 3 years of no pushing, no amazing sessions. 3 years of textbook work. Did we get some stuff done in 3 years, absolutely. but looking back we could have done so much more. I thought of your children because I thought oh I hope that have selina's out there. I hope that have amazing therapists. I hope these children will be pushed and not just left for a textbook result. I know as a mom sometimes we trust our extincts but sometimes we just have to trust the medical professionals, but sometimes those medical professionals just really dont know. They arent trying to hurt our children or anything, they really just dont know. I hope you all understand where I am coming from.

So I'll say it again...maybe this will be the last time. Maybe not.

DUMP YOUR THERAPIST IF YOUR THERAPIST ISNT AMAZING!!

or at least have a deep heart to heart : )


Kari

Progress... sort of

A couple of weeks ago, I posted about Esther-Faith (finally) starting to take slow, tentative steps with forearm crutches.

And last week, about the irony of her braces breaking a couple of days later--after we had already ordered a new pair of HKAFOs.

And last week, we picked up those new braces. The waistband and twister cables can be removed and put on as needed (we'll put them on when she gets fatigued). The AFOs are actually pink this time. Even the velcro is pink.

Our girl was happy.

The orthotics specialist is a perfectionist. Which is exactly how I like the person who is building the equipment that helps my daughter walk. We spent hours putting the braces on her, watching her walk, taking them off, making adjustments, and over and over again. And despite missing her nap, she was good-natured about it.

For a couple of days, we let her use the walker. Then, on the way to preschool one day, she decided she just wanted the crutches--just for that day. She isn't very good at the forearm crutches yet, so I was a little hesitant. But her PT was going to be there as well as lots of PT, OT, and other students.

Apparently, she did well.

And she did it again on Sunday.... until about nap time. Then, it was like we all took the quickest train available to meltdown city. We had to bribe her with candy and cartoons to get her to walk to the car.

Yes. I bribed her. I'm not (that) ashamed.

Yesterday, she showed off her forearm crutch skills for Papa in the nursing home. Today, she used the walker. I'm not sure what will happen tomorrow.

As with just about every bit of progress she makes, we'll take it one day at a time. I recall a time when she hated the walker. And the wheelchair. But she made progress. And when I step back from this situation, I can see that she will again.

This day belongs to the LORD!

Let's celebrate and be glad today.

Psalm 118:24