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Friday, January 31, 2014

The Big (Tethered Cord) Plan

Today we saw Dr. Moss, Madi's neurosurgeon.  He's not only an amazing neurosurgeon, but he is also gentle, takes his time, and he truly cares for each of his patients.  Dr. Moss has been Madi's neurosurgeon since before she was even born.  We love him! 

I talked to Dr. Moss about everything going on with Madi, from her head to her (sweet little) toes.  He agrees that it sounds like she may have a symptomatic tethered cord.  She has multiple tethered cord symptoms going on right now... renal reflux, tight left heel cord (that was released but re-tightened, even though we work on standing daily in HKFOs), scoliosis (that may be worsening), and spastic bladder.  Before deciding about surgery, he would like to do a big bang MRI and a full spine MRI, which we can then compare to the MRI she had about 2 years ago.  The plan is to go in for the testing, then go straight to an appointment to see him.  At that appointment, we will determine if we are going to do the tethered cord release surgery or not. 

We did get some really great news at the appointment, and I am so thankful for that!
  1. We would do surgery at Cardon Children's Hospital, as he now works there primarily, instead of at Phoenix Children's Hospital. I was nervous about this, as we have only been there in the past for visits, and I do not know their policies and the such.  He assured me that if we do surgery there, I can go in with her while she is going under anesthesia and that I can stay with her during her entire stay, even if she ends up in the ICU.  I told him I've heard stories of families (in other states) not being allowed to stay with their children in the ICU, and he assured me he would never let that happen.  I feel SO much more confident about being at Cardon now. 
  2. If we do the tethered cord release, he would like to do an aggressive release.  He does not feel that she will loose any mobility or sensation from the surgery, which is always a risk.  He also thinks that doing an aggressive release will clear things up, and keep things cleared up.  He does not think she would need another release in the future.   
  3. We can do a heel cord release at the same time and hopefully get her left leg nice and stretched out again.  Because she does not have sensation in her feet, this additional surgery should not bother her, but will save her from needing to undergo surgery again in the future to release it. 
They said to expect a call to schedule the MRI and appointment within a week.  I will keep everyone updated on when our next appointment will be.  Please continue to pray for wisdom and guidance for David and I, as well as Dr. Moss.  Thank you for keeping our sweet girl in your prayers!


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. 


A New Spina Bifida Potty Book

A fellow spina bifida momma wrote a potty book to help her child understand and see the value an potty issues like cathing and enemas.  It is a cute, basic book that does a good job of going through the "basics" of using the toilet when you have spina bifida.  I really liked that it talked about WHY it was important, so that kids can see the value in what they are doing.  Here's a link on Amazon to the book...
Here is a link to the blog of the mom who wrote the book as well...
Hope that this book can help other kiddos out there!

Tuesday, January 21, 2014

Our Bad News Appointment Today


When you are a momma of a kiddo (or two ;)) rockin' Spina Bifida, there are a few things that always run through the back of your mind.
  1. How is that shunt working? 
  2. How is their urine looking today?  Do I think they are still UTI free?
  3. Are their bowels up to par?
  4. Is there any tethering going on I can't see?
There are a few more, but I'd say those are the big ones.  A little cold, every flu, every bout of crankiness, you question if it could be more.  I don't think this is a bad thing, I think it is just being an aware parent, and part of what goes along with the job of raising a kiddo with some extra health considerations, but regardless, it is always there. 

Today we saw our orthopedic surgeon, Dr. Segal.  He answered #4 for us for Madi.  Bummer.  We knew this day may likely come, but it's a day that I think every parent of a child with spina bifida dreads. 

Before our appointment, the nurse wanted to do a spine x-ray, as at our last appointment, Dr. Segal mentioned she had a slight curvature to her spine and he wanted to check it out.  Turns out there is a curvature.  A big curvature.  She has scoliosis at about 50%.  That's fairly major, and the ramifications of that percentage are not so wonderful.

There is a good chance Madi is so curved because her spine is tethered.  Every child with spina bifida that has had a back closure surgery IS tethered, however, if that tether becomes symptomatic, it's time to treat it, which means a de-tethering surgery

The good news is that a de-tethering surgery may stop the progression of the scoliosis.  Dr. Segal said anything over about 40% curved is not often fixed with the surgery, but it would hopefully stop the progression.  The downside of the surgery is that about 10% of children come out with less functioning than before the surgery.  It also leads to more scar tissue, which can then lead to more tethering, which then, of course, can lead to more surgeries to de-tether the spine.  It's a cycle that you do not want to enter unless you have to, though it is important to address the issues and have the surgery if it is necessary, as degeneration can progress by not doing the surgery. 

Dr. Segal wanted us to see Dr. Moss, our neurosurgeon, and talk to him about Madi's symptoms and the possibility of surgery.  Thankfully we were going in to see him next week anyway, so the timing is perfect.  Madi also has to get fitted for a scoliosis brace.  She will need to be in the brace the entire day, unless she is standing, or unless she is sleeping.  I made an appointment with Ron, our go-to guy at Hangar, for this Friday.  I am praying this will be an easy transition for Madi and that she will not hate the brace.  Tami, our PT, came with us to the appointment (This is the first one she has been able to come and I was so thankful to have her at this one... that was totally a God thing) and asked Dr. Segal what that means for her mobility.  Does that mean she has to be in her wheelchair at home, or can she still crawl and climb as normal?  (As of right now, wheelchairs stay in the car for when we are out and about, and we crawl, get held, or stand in the house.  I know we can't/won't do this forever, but for now, I feel it is best for the girls.).  Dr. Segal said that there would be know way we could stop Madi anyway, because she has such a determined personality, so there is really no point in trying.  He said Madi can resume normal routines in the brace, so that is great news!

Before we agree to the surgery, there are a few things I feel need to be done at our appointment with Dr. Moss, her neurosurgeon.
  1. Madi's x-ray today was taken sitting up.  Because her left hip is dislocated, though, and her right hip is not, her body doesn't sit level.  Though I do fully believe she is curved, I think the percentage may be accentuated because of the way she sits.  I would like them to x-ray her again, but this time laying on a table, so that we can see how the spine looks at that point.  If it's still 50%, then that's ok.  It is what it is.  I just want to make sure.  Also, if it's slightly off, and she's at say 30% or so, then the detethering may help to reverse the scoliosis, which would be amazing.
  2.  I would like to try and establish a baseline for Madi's spine, as this is the first time we have checked for scoliosis.  Madi had a sedated MRI done about 2 years ago where they checked her spine.  I would like Dr. Moss to review the scan, specifically looking at it for the degree it is curved, and compare it to her current x-rays.
After we review those two things and talk with the neurosurgeon next week, we will likely have a game plan for how to proceed.  I will keep everyone updated. 

Though today's news was not what we were hoping for, we know everything will be ok. After drowning myself in Starbucks and talking things through with David and my mom, I feel more at peace about how to proceed.  Madi is such a spunky and determined little girl, and I know she will not let this slow her down.  Though it looks like a setback, I know in reality it will make her stronger.  I wish you could have seen her today.  She was in her HKFOs, standing tall. She walked (with Tami holding her hands) right up to Dr. Segal, looked at him in the face, and said, "I want to walk by myself!"  I fully believe one day she will.  We have been talking about getting her a device like a TAOS or gait trainer to help her be able to walk independently, but Dr. Segal says he does not think it would be a good fit for her, as it would do too much work for her.  He also fully believes that she will get to the point where she can walk on her own (meaning walking in her HKFOs using a walker or her arm crutches, without needing the help and support of an adult) one day, sooner rather than later, and told her that.  He told her to keep working hard and getting stronger, and that she would soon be doing it on her own.  That answer seemed to satisfy her :). 

Please be praying for wisdom and guidance for Dr. Segal, Dr. Moss, David, and I.  Choosing surgery is not always an easy thing to do, especially when it is not life and death and there can be so much grey area, but sometimes it is just so important (like it was with her vesicostomy surgery).  The idea of another surgery with more anesthesia, more antibiotics, and more recovery time, is not ideal, but we really want to do what is best for Madi in the long run. 

Thank you for praying for our family and for walking our journey with us.  Your love and support truly do mean more than you will ever know!


Monday, January 20, 2014

10% Off at The All Natural Face

I LOVE The All Natural Face and their make-up line.  It's all I use (minus the mascara... it's just not enough for me.  I use Arbonne)!  There are so many different color options (like so many it can be overwhelming, so I recommend ordering some samples), it's affordable, it's natural, AND it's made by a work-at-home mom.  It's the best!!  If you order using my code, you get 10% off your first order. Just thought I'd share!

P.S.  Usualy the service is amazing and items are shipped very quickly.  The last few orders, though, have taken me about a MONTH to get, which I think is far too long.  Just a heads up.

A Few Great Books

The girls got a few new books for Christmas that they are loving, and I just thought I'd share (if you click on the pictures, it will take you to Amazon using our Associate's Link :))


And this is an oldie, but one of their favorites :)

Monday, January 13, 2014

Sometimes I Cry

Sometimes I cry.

Sometimes it happens in public.

I am sure some people see my eyes swell with tears and think I am sad, but that couldn't be further from the truth.

When I look at my children, when I see their radiant joy, when I watch them laugh and experience new things, I can't help but be overcome with emotion. 

Most of the world looks at my girls and says "I'm sorry".  But I am not sorry.  They are PERFECT

Their life is beautiful.  Their life is worthy.  They love their life.  They are a blessing.  They are truly happy and so very, very loved

So, yes, sometimes my eyes get a little teary.  I just cannot help but look at them and feel an overwhelming sense of gratefulness that I get to witness their story unfold, and I get to be part of it. 

God has blessed us tremendously


Sunday, January 12, 2014

Our Quick Trip to Sedona

This weekend we took a quick trip to Sedona and had a BLAST! 

Thankfully David has his confidence back at work, but he's been working really hard and was feeling stressed, so we decided it was time to escape for a bit.  We both had Sunday off from serving at Church, so it was the perfect weekend to go! 

We left of Saturday morning to head up to Sedona.  And by morning, I mean 11:00.  On our way up we drove past a sign for Out of Africa zoo and decided to go.  It was a lot of fun!!  It is not very accessible, as there are no paved paths, but the girls (and their wheelchairs) did well and we made it through.  They were very accommodating and went above and beyond to try to make sure we had the right busses for the tours and the such and could see all the shows. 

On the tour you got to feed a giraffe celery.  The tour guide suggested feeding with your mouth for a big giraffe kiss.  Conner decided that was a great idea and gave it a shot.  The girls were not quite so adventurous. 


After the zoo we headed to the hotel.  After eating dinner, we just laid in bed and watched some tv.  It felt great to be vegetables for a bit!  The next morning we grabbed breakfast and then headed out for a hike.  The girls rode in style in their ToddlerHawks, of course.  It was a beautiful trail and everyone really enjoyed it. 

Before heading home, we stopped to "fish" at the trout farm.  It's not really fishing, as there are so many trout you catch one within seconds of throwing in the pole, but we haven't taken the kiddos fishing before so they had a blast.  Normally we don't eat farmed fish, but they don't allow catch and release, so tomorrow night, we dine on trout!  I'm not sure if the kiddos will eat it, but we will try!  So far they only eat the breaded gluten-free pan fried cod I make, though they tell me it's chicken and won't accept the truth ;). 

 And their favorite part.... feeding the fish :)

It was so nice to get away, even if it was just for a night.  We can't wait to go back to Sedona again one day!


Conner Turns 7!

My big guy (I called him my little guy today and was told it was not ok, unless we were in a restaurant....) turned 7, and I just cannot believe it!  Time sure does fly!  I am so glad I spent all those hours rocking and holding him, because I sure miss being able to do that now.  Thankfully he is still sweet and cuddly with his momma.  He is such a fun kid.  He's always wanting to figure out how things work, he loves creating new things, and he has a great imagination.  He is very sweet to his sisters (usually ;)) and is a great brother.  He is a very caring and loving boy!

Conner requested a Pokémon birthday and wanted to go to Laser !uest with friends for his party.  We decided to have a family party and then a friend party.  He was a little bummed he had limited invites to his party, but had a ton of fun.  His friend party was on Sunday (last week), his family was on Monday, and his actual birthday was on Tuesday, so he loved that he got to celebrate three days in a row.  Here are some photos from his birthday...

The family party...

His funniest gift at the family party... Poo Pourri from my brother and his wife.  And yes, it really works!

Conner told me he wanted a Pokémon cake, but I had no idea how to make that happen.  Thankfully Michaels sells edible sugar sheets, so all I had to do was use their edible markers, draw Pikachu, cut him out, and put him on the cake. 

Laser Quest Friend Party....

They surprised him by spraying him with toilet paper (new, thankfully ;))

Happy birthday to my amazing boy!!

Cute New Shoes (AFO Friendly!!)

I have the hardest time finding the girls cute dress shoes that fit.  Madi has very short and "pudgy" feet, while Ramya's feet are thin, but shaped differently, bending and curving just enough to not fit in many pairs of shoes.  When we try to go shoe shopping, we usually have a hard time finding even 1 pair.  Though Ramya doesn't love shoes and doesn't get upset, Madi gets really sad when we can't find shoes for her. 

The girls don't really need them shoes walking, more for just keeping feet covered and cute (and warm in the winter), so I decided to look on Etsy.  I found a cute shop that sells hand-made shoes that are similar to Robeez.  I messaged the shop owner, and it turns out she happily custom makes shoes for kiddos, and can even make them to fit over AFOs!  It is SO hard to find cute shoes that fit over AFOs!  I'm not sure how durable these shoes would be for walking, but they are perfect for us.  Here is a link to the shop- .

The girls are really excited about their new shoes!


Wednesday, January 8, 2014

Madi's Little Feature on the Rifton Blog

Madi was featured on the Rifton blog, dancing in her HKFOs and with her Rifton Dynamic Stander.  You can see her feature at...