The Present Story 2013-2016

 

Actually, a little update for 2008.  Dr. Croley announced that he was retiring.  Because of my background in TKM and QT, he trained and certified me in his work.  Now Irene has the benefit of Total Repro directly from me.  Thanks first to God and then to TKM and Total Repro, she has never been hospitalized.  I am extremely grateful to Dr. Glenn King and Dr. Croley for teaching me everything I need to know to care for Irene.  I thank the Lord for directing me along this path.  It really is a gift and a privilege.

 

 

In 2010, she asked if there were other kids like her with the same diagnosis.  We took her to Abilities Expo where she met two new friends, Adrian and Lyndsey.  That same year, she met Samuel, who was vacationing with his family in Texas.  He ended up giving his old power chair to her since, at that time, she only used a manual chair.  His new chair was waiting for him at home.  This transformed Irene's life, and mine, as she discovered a new independence.

 

 

  Also in 2010, Irene got to meet Astronaut Piers Sellers.   Pray for his family.  He passed away December 23, 2016.  I'm so sad to hear this.  He was just 61 years old.

 

 

Irene got a dog.  She specifically wanted a full-grown German shepherd.  She named her Country.

 

Also in 2011, we got to meet chef Alton Brown.

 

 

In 2013, because of an awesome tax refund, I convinced her father to take Irene to Disneyworld!  Our vacation date was set for April 29, 2013.

But in March 28, I took her to an Easter Egg hunt where she ate an unusual amount of candies.  She had not been allowed to eat candies because she becomes weak.  I don't know what is in those candies, but she becomes floppy and her head falls back.  Maybe she just didn't keep track of how many she had eaten.  

The next day, Friday, she was carrying a cup full of dirt when she came over the driveway and dropped the cup and ran over it with her power chair.  This little bump caused her to slump over her huge, metal, racing car seat belt which pressed into her right femur and crushed it.  At first, we thought it was just a twisted knee.  I had seen the accident as it happened, so I didn't think that it could be a broken leg.  She was crying and in great pain.  I applied TKM for 3 hours over her knee.  This is why her leg did not swell as much as it would have.  The pain went away, but only if she stayed still.  So stayed on the massage table for the next two weeks.  It was the adrenalin that allowed me to put her there in the first place.  That weekend was so incredibly difficult.  Through all this, I had to keep a calm face.  But inside, I was torn up!  I never want to see her in that kind of pain EVER!!!

 

 

By Monday morning, an in-home x-ray technician came, and he confirmed the break.  We had to delay our Disney vacation, and she was very upset.  She said that she would never eat another candy ever again.

 

Best friends being silly

Trying to bend her knees

 

The only appointment I could get was with Fondren Orthopedics that Wednesday.  They were horrible!  Dr. Gugenheim said that her leg would be crooked, but he wouldn't reset it because she "wasn't going to walk anyway".  He had his people cast the full length of her leg without any pain medication.  Irene screamed and begged for them to stop.  I cannot fully express what kind of nightmare that was.  He didn't want to take the cast off for at least 6 weeks.  He was so cold and uncaring that we never went back to that place.

Our neighbors helped us find Dr. Antekeier.  He has experience with special-needs children, and he gave us good news.  Her break was above the growth plate, and her leg would straighten as she grew.  He said that she had osteopenia, but not osteoporisis as we had thought.  But his recommendation was that we wait until the fall for Disneyworld.

 

For six weeks since the accident, I worked on Irene with intense TKM for hours and hours, staying up until 2:30am so that her leg would be ready for Disneyworld by mid-May before the crowds.  It worked.  Dr Antekeier released Irene to go to Disneyworld in mid-May!  He even took off her cast after only three weeks!

Only one week after her accident, Irene didn't have any pain, just a lot of fear.

By the end of the second week, she was able to sit up and go to a birthday party.

She worked on bending her knee and was able to sit with her knee bent one week before we went to Disneyworld.  She had the best time ever.   She even got to meet Winter the dolphin from the movie Dolphin Tale.

   

 
 

In 2014, Irene's power chair broke down during a game against the San Antonio team.  She hasn't been able to play with her team, the Houston Fireballs, since then.

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Every time something happens to set us back, I get so depressed and gain a bunch of weight.  Then somehow, I pick myself back up and try again.  I have promised Irene to never give up trying to find her cure.  She is such a happy child, even through all the family problems.

 

 

 

 

There are many things that have happened from 2008 - 2016.  It really was very discouraging for me during this time.  Irene lost her ability to stand since the EMF incident.  Her mild scoliosis got worse from breaking her leg in 2013.  Her father and I separated in 2014. 

Since the divorce in 2016, I've had more time for Irene's treatments again, and she has actually showed some improvement in motor skills.  Her legs are so strong, but her core is still too weak to balance herself.  I believe she CAN WALK or at least stand independently.  She just doesn't have the home therapy equipment to help her build muscles to get stronger.  The only way for her to do that is in the water.  One day, I will get her a therapy tub for aquatic therapy at home.

For now, the transportation is a little bit of a challenge.  We are driving an old 2-dr Tahoe.  I have to lift her up into the front seat for transportation.  We can't go out on rainy days.   In three months, it has stalled 7 times.  Her power chair rides reclined in the cargo area.  It is beginning to make noises from this set-up and could break down, so we need a proper mobility van.  If her power chair breaks down, she will be stuck riding in a manual chair, depending on others to push her around.    She's too independent for that.  Irene is such a precious child, and she makes my heart swell with pride and joy.  I never knew it was possible to love this much until I had Irene. I'm sure all moms feel this way!  If anyone is reading this, please help me get a safer vehicle for her!  I had set up a GoFundMe account for a mobility van.  Since August 2016, it had only gotten a $50 donation.  So I closed the account.  We'll figure out what to do one day.

God has provided a lot for us.  I'm sure Irene will get her aquatic therapy tub and a proper mobility van one day

 

 

Irene had a Quinceanera in June of 2017!  I never thought I could do one for her.  The entire Pizana family and my parents helped make this possible!  I am so grateful to them for making Irene feel so beautiful and special!

 

 

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