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Monday, January 27, 2014

Fitted for Her New Back Brace

On Friday, Madi was fitted for her new back brace.  The plan is for her to wear this all day, but not at night or when she is standing in her HKFOs.  It will be made out of the same plastic material as her HKFOs and is being custom made/fit to her by Ron (our go-to-guy) at Hanger Orthotics.

Madi was very excited to get fitted for her new brace.  I know she does not really understand what she is facing, but her enthusiasm and amazing attitude does wonders for this momma's heart! 

When she got her last HKFOs made, she was really bummed that there were not decals for eggs, caterpillars, chrysalises, and butterflies.  She wanted the whole life cycle of a butterfly on her HKFOs.  Ron remembered that and brought in a sample of a new decal they have that is all different types of insects.  Oh boy, that made her day!!  She tried to keep the sample, and then kept kissing it.  She is such a ham!  Ron promised he would keep the sections he cut out of her new back brace so that she could keep them.  She was pretty happy about that, and decided that it was ok to give the sample back to Ron. 

Ron made her a "special" tank top to wear under the casting material, like he always does when he has to cast her body to make a mold.  He uses a light meshed material and cuts it to go over her body like a shirt.  She always thinks these are treasures, and refuses to take them off.  Oh yes, she did wear that tank top (which she called a bathing suit) all day, even out to the grocery store ;).  She was so proud of her new "shirt".

We head back in a few weeks to pick up her new brace.  It can go under or over her clothes, but she will need a t-shirt under it so that it does not bother her.  I'm now on the hunt for light-weight tank tops, because it gets so darn hot here.  Adding a shirt and brace is going to get hot for her. 

Friday we go in to the neurosurgeon to discuss everything we discussed with Dr. Segal, our orthopedic surgeon.  I am praying for wisdom and direction for both David and I, as well as her team of doctors.  Her doctors are conservative with surgery, and really consider all the angles, so I am very thankful for that. 

Thank you for all of your prayers for our sweet girl.  We have really seen God's hand throughout our newest journey.  We were actually supposed to see Dr. Moss, her neurosurgeon, a few weeks ago, but they rescheduled the appointment.  The timing was perfect.  If we had seen Dr. Moss before seeing Dr. Segal, it probably would have taken us months to get back in with Dr. Moss to discuss the x-ray and newest findings.  Also, Tami, Madi's physical therapist, was able to go with us to our "big news" appointment with Dr. Segal.  It just so turned out that our appointment time was at the exact time Madi normally has therapy, so Tami offered to come with us.  We also usually wait at least 1-2 hours to see Dr. Segal, but this time, we were seen in about 30 minutes, which is a huge miracle in itself.  Because of that, Tami was there with us for the entire appointment.  It is awesome to have that second set of eyes and second opinion from someone who has seen Madi on a weekly basis since she was a baby.  I am so thankful for these little God moments, and how He is orchestrating everything and putting each little piece in its place. 



Anonymous said...

As someone who wore TLSO for many years the best thing to wear under it is the stockinette they use when making the mold for the brace itself. If you can get several lengths when you pick up the brace. Don't put armholes in it, use it as a tube top & roll the extra length over the top/bottom of the brace to help reduce skin irritation. Also, watch for ringworm under the brace! Hope this helps & best of luck with all of it!


Claire from the Calico Corner said...

She is so precious! I am praying for all of you and your appointment tomorrow.

Tami is my brother's physical therapist, and she gave me your blog address a while ago (before you brought Ramya home), because I am passionate about special needs adoption/advocacy. I have loved following your family's beautiful journey.

I recently started teaching a theater class at the Branches co-op, and saw you and your girls there today. I would love to say hello sometime if that would be all right!

Thank you,

Jamie said...

Thanks for the tip!

Jamie said...

Yes we would love for you to introduce yourself :)