November 26, 2012

Dyspraxia and Hippotherapy

This is a guest post by my friend.

Bethany's Story

We were so excited to be starting a family.  My husband and I had been married for three years, just bought a house, and were financially secure.   This was the “perfect” time.  Of course I knew it might take a little longer because I had PCOS, but it took two years, two miscarriages, and a ton of medications and doctor’s appointments before we finally became pregnant with our children.

Our first appointment was at 6 weeks and we were overjoyed when they found two sacks!  We went back the next week and heard two heartbeats but the complications had already began.  The second baby (baby B as they call it with twins) seemed to be a few days behind baby A.  As the pregnancy progressed,  the gap between the twins widened.  Baby B was missing an artery in her umbilical cord. While most infants have three, she only had two but the doctors assured me that she would still obtain the needed nutrients. In the end, our B baby (which we named Bethany) was about 10 days behind her brother.  The doctors were perplexed.  At first they thought there might be something wrong.  We “passed” the initial screenings for disorders, and we decided not to go further with any genetic testing.  It didn’t matter.  We were happy to have our two miracles no matter how it turned out.  As you can imagine though, I was a nervous wreck though most of the pregnancy! She was eventually diagnosed with IUGR (Intrauterine Growth Restriction).  The twins were delivered via emergency C-section at 37 weeks when it was discovered that she had not grown since my 35 week appointment.  

While the birth was not ideal, both children appeared healthy.  They couldn’t find anything “wrong” with either of them. Bethany weighed 4lbs 15oz.  She was a little peanut – the cutest little peanut I had ever seen.  
The first few months were pure joy.  Bethany was always at the 10th percentile for weight, but was holding her own.  She had reached her developmental milestones at appropriate ages (holding her head up, rolling over, etc) until about 8 months when I really started to question if there was something “off” about our little girl.  She wasn’t able to sit up without support yet.  She had a hard time regulating herself. When she got upset, she couldn’t calm down.  I had to teach her how to self-soothe.  As she got older, we noticed she was sitting in a W position.
W leg position
Then as we saw other children her age begin to say words, we noticed she wasn’t.  A few months before her second birthday, we decided to get her tested.  The testing confirmed our suspicions – Bethany’s language was significantly delayed, and so were some of her motor skills.  She began the Early Intervention services of speech, OT, and then later, PT.  The words came, very slowly.  I waited and waited for her to be able to tell me she loved me.  It came just before her 3rd birthday.  I knew she was smart.  It was in there, but it couldn’t come out!  On top of that she was clumsy.  She looked like a wrecking ball at times.  Through the hard work of our therapists, and through our own diligence we finally got a diagnosis… Dyspraxia.

Dyspraxia is a developmental disorder that affects motor movements.  The signals going from the brain to the muscles don’t work quite right.  They need to be trained, with a lot of repetition, to learn the appropriate patterns.  In Bethany’s case, this accounted for her language delay, poor articulation, and “clumsiness.” 

At three years old, Bethany attends a special education preschool where she gets speech 4 times a week, OT twice a week, and PT once a week. She STILL cannot sit up without sitting in a W (which is making her pelvis tilt and could affect her posture/alignment), or sitting with something behind her.  She can’t cross her legs in front of her to sit like the others can because of her low tone (lack of core muscles) and the tightness in her inner thighs.  She often cries through PT because the stretches she needs to do hurt. Since she only gets it once a week, we have to do exercises at home and constantly nag her about the way she is sitting.  I feel bad always having to be “on” her and focusing on what she can’t do.  She is such a sweet girl, but she’s also sensitive.  We want her to do well, but we don’t want her to realize her limitations or to feel bad because she has to be directed so much.

Bethany has always been such a caring and nurturing person. Early on, we learned that she has a love for animals and we are blessed to live in an area obsessed with horses.  When I saw her on her first pony ride it came to me - hippotherapy! My goal was to find something that Bethany could excel in and feel good about and here was the perfect opportunity to do just that.  There is a local hippotherapy program for persons with developmental disabilities.  It’s run by a PT who knows how to get the most out of each session.  Some might ask why is riding a horse considered therapy?  Riding a horse will work all of Bethany’s areas of weaknesses. Bethany will have to stretch before getting on the horse, one of her least favorite things to do. Though this can be painful, the motivation of what is to come will help her to do her best.  Once on the horse, she cannot W sit,  her pelvis can not tilt and her feet and legs must be in a  forward position.  Three things we constantly work on with her.  Horseback riding also requires a great deal of balance, which is obtained through using the core muscles, her weakest area. That will, in turn, help her progress in the other areas.

Hippotherapy is still considered “experimental” by insurance companies and is not covered. The therapy is expensive and we will have to pay for it out of pocket. But, seeing Bethany improve in her fine and gross motor skills and her self esteem is worth the cost. We plan to pay for it through scholarship grants, if we are deemed eligible, volunteering at the stable and financial support from our families. However, that will still not be enough. Please browse my facebook page, Bethany's Hippotherapy,  and consider placing a bid on an item. We will be posting 1-2 items a week for the next few weeks. We will be auctioning off necklaces, a bracelet, a plaque, and magnets.  All are horse themed and hand made by me (Bethany will help with the plaque) and would make great Christmas gifts! All proceeds will go towards Bethany’s therapy. Thank you so much for reading Bethany’s story and for your support in helping her reach her greatest potential!

November 13, 2012

Here We Go Again

This sweet boy has done most of the physical stuff early and actually refused to crawl more than a week or two before deciding it was time to walk.

But Charlie isn't a talker. He can raise a ruckus when he wants to but most often he's quiet. There are some things that, at 15 months, concern me so we are going to have him evaluated by Early Intervention. I'm fairly certain he will qualify for services and so we will be seeing some familiar faces walk through our door once again.

Not exactly happy about that but at least with Charlie I can be pretty sure he will eventually talk so I'm not really worried.

November 5, 2012

It's November!

Don't forget about 30 Blankets in 30 Days! As you can see on the right, we have had some donations but we have a way to get to 30 blankets. Please donate if you can and if you can't, please repost the blog link on your blog or facebook page to spread the word. Thank you!

November 2, 2012

A New Tradition on Halloween

On Halloween, we went to Tate Farms. We picked up Rachel right from school and went. The reason we went so late was partially due to the fact that the time right before dinner can be crazy if the kids are already getting tired. But, thankfully, Charlie took a great nap before we left and Rachel slept all the way to the farm so both we rested and ready to go.

Charlie is asserting his independence. It's always been pretty easy to redirect Rachel if she decides to run the wrong direction but with Charlie as soon as I try to turn him he goes limp and flops to the ground. He gets so upset! It's comical, really. He spent a good part of the time there walking around and climbing on the wooden "tractors".
do you see the Alabama snow in the background?

Rachel had an absolute blast playing in the giant vats of corn kernels, going down slides and bouncing on a giant inflatable pillow thing. She also fell in love with the bunnies they had at the small petting zoo. she was pretty gentle but scared the crap out of me (and probably the bunny) when she decided to hug them! Stephen and I both agreed that going to the pumpkin farm on Halloween was going to be a new tradition for our family.

will anyone notice that i'm eating this kernel of corn?

Halloween was a little crazy. The kids were so dirty from the farm and dinner that they needed a bath which meant everything was rushed to get out the door. Charlie was pretty tired at this point and didn't really want anything to do with getting dressed up and walking around outside. Rachel was doing her best bedtime crazies and was a complete handful once we stepped outside. We only got a couple pictures of our fireman and bunny but aren't they cute?

she actually kept her ears on the whole time - amazing!