Thursday, December 5, 2013

Disappointing Appointment Update

After my appointment, I spend 2 days researching spiraling of bones.  The doctor was unsure of whether it was upper or lower leg bones that were spiraled, and said it would take a CT scan to determine it.  But that is a very invasive procedure for a 6 year old, usually requiring general anesthetic.

There is a lot of scary info out there about this!

I emailed back and forth with Callie's neurodevelopmentalist, Cyndi Ringoen.  She assured me that bones completely remodel themselves every 7 years.  So if we improve her form, with the tension being released, they will remodel closer and closer to normal over time.  She explained it is the deference in philosophy.  Medical doctors operate on the premise that form determines function.  Neurodevelopmental therapy's philosophy says that function determines form.  In the former, she can only attain to THIS level because of her form.  The latter says that if we change the way she moves in this case, we actually change the form of her body, bones, muscles, etc.  It is certainly a route with a great deal more hope and more to strive to achieve for Callie!

Cyndi also reminded me that medical doctors are trained in medicine and surgery - those ARE their tools, and they tend to be against anything outside of their tool box.

Then we took Callie to Dr. Patrick.  Who worked on Callie.  I explained this appointment, and he thought this doctor was ridiculous, too!  The amazing thing, is that after the appointment, the so called 'test' that this doctor gave us to prove she had spiraled bones, no longer came out with the same result!

Dr. Patrick does NOT think that Callie has any spiraling of her leg bones.  He did confirm that it is possible for it to happen, but the way we keep as much pressure off as possible with her therapy and bringing her to see him, he doesn't foresee it being an issue for her.

In all, this was a week of stress, strain, worry, and lots of needless research.  But I am so glad to have this alternative medicine route for Callie.  She has far exceeded all of the expectations that traditional western medicine has said would limit her...and she is not done yet!  We are still seeing some wonderful changes and progress to her gross motor abilities!

At the end of Callie's Dr. Patrick appointment, I told him that I wasn't sure why I keep going to traditional doctors, and he reminded me of that hope of finding someone else who can help, and that I would likely do it next time, too...and he is right.  I am willing to do as much as we can to help Callie with her walking/mobility and overcoming her cp.

Wednesday, December 4, 2013

A Disappointing Appointment

I hear about these 'amazing doctors!'  And I think, 'it sounds like this person could help Callie.'

So I make an appointment - usually really far off (in this case, it was 3 months we waited for this appointment).

The big day finally came.  We were scheduled to see this doctor who is top in her field for rehabilitation medicine.  She is someone who could help Callie with her internal rotation of her legs at the hip socket.  Someone who could help us with getting her heal down.  Someone who could help to relax some of her tone.

In the end, that is not what we had.

We actually had three appointments at the hospital that day.  So we really wanted Callie to conserve her energy, which means using her wheelchair.  And the rehab doc also wanted to see her in both the wheelchair and the walker - so we had to bring both, anyway!

The first appointment was to get new tread on her shoes.

The 2nd appointment was to get her shoes back and make sure they are working for her still.

Both of those went very well!

Between those 2 appointments, we had about an hour to kill.  So we utilized the time with some school and therapy on the bus!

Then it was time for the big appointment...the one we had been waiting for.  I even used the sibling room for the first time at the hospital to have fewer distractions with me!

This doctor came in, introduced herself, and looked at Callie - who was tired by this point.  This doctor wanted her to relax while she moved her legs around (something that is uncomfortable and difficult for Callie to do when nervous).  She was not very patient with her...

Then she wanted to see Callie walk.  Callie walked in her shoes, without her shoes, and then demonstrated how she gets in and out of her wheelchair.

After that, we went back in the room to talk.  She told me that we just need to get used to seeing her in a wheelchair.  I asked why.  She explained that because of the years of constant torque on her legs, her bones have grown into a spiral shape.  There is nothing that can be done about this, surgically, medicinally, therapy wise, so she has come as far as she can.  She said we could only help the internal rotation that is coming from the muscles being tight, and that some low dose injections of Botox would potentially help if we could come up with a 'proven' intensive therapy program for her. (We had already talked about the therapy she does, and were told that it is of no use.)

I didn't like this answer.  I was grappling a bit with how to respond.  I decided on getting as much info as I could.  I asked that if we were to get better form in her gait, that over time, growth and cell replacement, would her bones remodel themselves in a straight, or at straighter fashion.

Her comment was that she had heard that I ask a lot of questions.  She said that the short answer is no.  

I then asked how she could tell that her bones were twisted.  This is a concept that I had not encountered so far, and wanted as much info as I could get to do some research on my own for this!

She showed me a test and the resulting angle of her foot when relaxed in a certain position, which she said indicated the twisting of the bones.

I left feeling pretty defeated.  I have come a long way since first being suggested to look into a wheelchair for Callie.  I no longer feel like a piece of me dies when I see her in it.  (Though as I get up to Thanksgiving I will talk more about how it felt for her to ASK to be in her wheelchair...that hurt a bit!)  But I do not want to 'just get used to her in it,' either!  I want to give her every possible chance at the best life long mobility we can attain for her.

I went home.  I did lots of research.  Lots of research.  At one point I wondered how I had missed twisting of the bones as even a possibility!

I also researched Botox a lot.  It is something that I am hesitant to do for Callie.  I do not want her to NEED to do something, especially something as toxic as botox to maintain mobility.  My initial reaction was that no, we probably do not want to do this.

This post if getting long enough, and I need to go make I will continue it later with what I have learned and who I have talked to since this that has made me feel better about it.

Would this be yard work or playing?

It can be really hard to tell around here - which I am so grateful for!  It is such a blessing to have cheerful helpers!

Pumpkin Parable

We had friends over this year to do the pumpkin parable with.

First we cleaned the outside of the pumpkins.
Then asked if they were 'clean'.

Then we opened up the pumpkins to see if their 'hearts' were clean.  We talked about the scripture that Jesus said that we wash the outside, but inside is filthy.

We then proceeded to get the 'sin' (pumpkin guts) out of the pumpkin.

But that is not where God's work of redemption, salvation and ultimately sanctification ends.

God not only takes out the bad, but fills us with joy, which is why our pumpkins need to have a happy face!

And He puts His light in us.

We add cinnemon to make our pumpkins smell like pumpkin pie when the candles are lit!

Then we put the candles in, to symbolize God's light shining out of us.

We had a great time!  It is always a joy to teach my children (and others) about Christ and the power of the gospel in a hands on manor!

And here is the end result of this year's pumpkin carving!

Pumpkin artists, from left, Anna, Tirzah, Hannah, Ashley, Priscilla, Justice, Brianna, Serenity, Sabrina, Callie.

Everyone did such a great job!

I love to see the creativity of my children (and their friends)!

Happy Birthday Serenity!

Happy Birthday to our sweet, energetic, cute beyond words little 3 year old Serenity!

I can hardly believe that she is already 3 years old.

She is such a cute, funny, precious little girl with a BIG imagination!  She absolutely loves to play pretend.  It is reminiscent of Ashley when she was this age.

She is also very into Disney's Toy Story.

Jessie is her favorite character!  She runs around saying, "I am Jessie!  Run like the wind Bullseye!"

Serenity can play pretend with just about anything!  She can take rocks and make up an entire show with them.  Or buttons.  Or paper clips.  Or...well, you get the idea!

She loves to play with Justice and Callie.  She asked me the other day if, because she woke up early from naps, she could 'wake up J and Cowlie' (this is how she pronounces Callie), because she was 'just too lonely.'  It was cute.  But not a good enough reason to wake them up, lol!

Serenity loves to help out.  Whether it is making a meal, snack, caring for animals, or cleaning up, she loves to help out!

Other cute things Serenity says include:

"Oh, dat is a gweat idea!"

"What's a towgirl without a hat?"

"Tome on, Dudah, let's doe play!"

"I don't want to till Roy." (very sad and down trodden - this was a rmean old rooster who was killed weeks ago!)

Making The Most Of It

We had no power.

The thing about that is just not knowing how long it will last.  10 minutes?  2 hours?

We were out running errands during the day.  From just about the time the power went out, just after lunch until almost dinner time.

We decided we needed to go do something else for dinner.  We didn't want to open the fridge or freezers.  We do not keep much on hand that we can grab and eat.  It requires cooking.

Here is the dark house and the well lit bus.

We went to McDonald's where we could get food (sort of?  Almost?  Alright, we could fill our stomachs!) and the children could play indoors, where there is heat, and light until bedtime.

Grandma came with us.

Grandpa stayed home working on a report in his nice warm, well lit camper, lol!

(It made me wish that the motor home was an option!)

Back at home it was still dark...

Grandpa brought in a car battery and a converter...

Which gave us HEAT...for about 2 hours.  Which was much better than nothing, as the house was very cold.

25 hours after the power outage started, we got power back on.  And I am so very thankful for heat, running water, my stove and oven, hot water, and lights!

(Being on a well, when we have no power, we have no water!)

Tuesday, December 3, 2013

Tuesday, November 5, 2013

Where the Rubber Meets The Road

This is right about when therapy gets *really* tough.  

Not that anything is inherently difficult.  Or even that there have been any changes.  Actually, it is the opposite!  We are almost 1/2 way through this therapy session (a 4 month period of time between when new programs are written).  So for the last (almost) 8 weeks (Thursday we will have complete 8 weeks), we have done the SAME 94 activities each day. 

All things considered, I feel really good about the consistency we have had so far this session!  Most activities have been done more than 80%, which is my goal.  Brianna has been so very consistent with her program.  I am so proud of how independent she has been with things.  She has grown so much in her reading and math skills!  She has just started to read chapter books.  The child, who at 6, couldn't even recognize her letters, let alone say the sound they make, is now, at 8 reading chapter books!  What a difference the neurodevelopmental approach has made for her.  We are so excited about her progress and growth academically!

Callie has not been as consistent as Brianna.  She is not able to do as many things independently.  She needs help to at least get things set up most of the time.  She is doing very well with her reading (actually, I would say she is about where Brianna was 6 months ago - but it no longer looks like Callie will surpass her with Brianna's recent reading explosion!  This is something that Brianna was concerned about) and she is finally retaining math facts.  While she knew how to count on her fingers or to make circles or use counting chips to figure out math problems, she was not able to just REMEMBER them.  But now, she is doing great at retaining and remember her math facts all of a sudden.  I have no idea what changed, but I am glad of her!  And so proud of her hard work.  

Callie has more academic therapy things than she has ever had...which makes sense since she is getting older, but it came with a very physically demanding program as well.  We are looking at the real possibility that she will need foot surgery if nothing changes with how she stands and walks.  All of those who work with Callie are concerned about this and working on getting better form.

Then she had this crazy gait training study.  Don't get me wrong, I am so glad she had this opportunity.  I am thrilled with her progress.  And I am thankful for the education it also afforded me which has allowed us to HOME.  It is still time consuming to do gait training each day, but much better after cutting out hours of commuting each day!

This therapy session also includes our annual standardized testing, Thanksgiving, Christmas, and New Year's...which means it is really hard to keep therapy going in the midst of so many festivities!  I am still hoping for about 80% of therapy to be complete by the end!  We have made up quite a bit of ground since the end of gait training 3 weeks ago, and I hope for that to continue and carry us through all of the holidays we have coming up.

Yep.  This is definitely when therapy gets difficult, tedious even.  It takes dedication, consistency, and determination to stay the course, buckle down and keep going.  And it is such a blessing that Brianna and Callie both remind me what needs to be done many days, and ask to get their therapy done.  Their dedication and consistency is truly inspirational.  I am so thankful that God gave me such amazing children!

Wednesday, October 30, 2013

Fun Day At The Pumpkin Patch

What a fun way to celebrate the harvest season!

Here are the pics of the great time we had!