Madi's Scoliosis Brace and Upcoming MRI Date

Last week we picked up Madi's first scoliosis brace.  She was very excited to pick up her brace and was even more excited to try it on.  She gave it a few kisses and announced that she "loved it." 

 

Madi with Ron Whiteside, our go-to guy at Hanger that we love

Then we brought it home, put it on, and she realized she loves her brace.... just not when it's on.  The first few days of having her wear it were a little rough, involving some tears from both of us.  Unfortunately it makes her body stiff, which throws off her movements and balance.  It's hard seeing her feeling limited in her mobility, as her movement is already limited.  I kept reminding her (and myself) that it would stretch out soon and would feel more comfortable, and that she would learn how to move around in it and get used to it quickly.  Ramya and Conner have also been encouraging her to keep trying, it's very sweet.  I am so very thankful for her amazing determination and positive attitude.  She really is adapting quickly to it and is doing very well.  I am thankful that she will never let anything slow her down, especially not an adorable little pink scoliosis brace!

Madi takes off her brace when she stands in her HKFOs, goes potty, and for a few little breaks here and there.  She also does not have to wear it while she sleeps.  Sometimes I'll notice she doesn't have it on and I will ask her what happened to it.  She will tell me, "I said, "bippity, boppity, boo, and POOF!  It disappeared!"", which really means, bittity, boppity, boo.... I used it as a door stop, mom...

 

 

Did I ever mention that she is creative?!?!?  Ha, I love that girl.   Yesterday I took Madi potty, got her re-dressed, and then told her she had a few more minutes and then she would need to put her brace back on.  I walked out of the room for a second and when I walked back in, she was wearing her brace.  Apparently Conner put it on her, correctly, and she was pretty excited about it.  He was pretty excited and proud as well.  He got the brace in the right place, and even had the straps buckled the correct length.  I was pretty impressed!  Here's a video of Madi explaining why she wears her brace...

 



 

In other news, Madi's head and spine MRI is all set for this Tuesday, February 25th.  We have an 8 am check in at Cardon Children's Hospital, so we will leave around 7 am.  She will have to be sedated and they said to plan for up to 4 hours, though I think it will be closer to 2 hours for the scans.  They are doing 4 scans, and set the estimated time at the max time for each scan.  Her little body just won't take that long to scan, though.  She will have to go NPO (nothing by mouth) and midnight. 

Please be praying that Madi handles the anesthesia well and that they are able to quickly and efficiently get the images they need.  Pray that the anesthesiologist will let me go back with her while she falls asleep, which is really huge for Madi's peace of mind.  Pray that she wakes up calm from anesthesia, as she usually wakes up very confused and angry.  Please also be praying for wisdom and discernment for her neurosurgeon, Dr. Moss, as well as David and I, as we determine if and when she will need detethering surgery.  If she needs it, I am hoping we can wait until May, when she is out of preschool.  Not only would it be summer break, but also, she will be homeschooling full time after that and we will be a little more flexible.  Our homeschool co-op, which she loves, will also be on break for the summer, so she wouldn't miss homeschool co-op.  I am also praying (and PLEASE join me in prayer for this) that her scoliosis isn't truly as bad as her x-ray looked (where she was sitting on her out-of-socket hip) and that doing the surgery, if we decide to go that route, will actually reverse her scoliosis so that she does not have to wear a brace any more, or at least not all day like she wears it now. 

Thank you for being our prayer warriors!!

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.