Casting Life and Casting Party

Well, we are almost two weeks into casting life, and things are going great!  Savanna has been sleeping really well lately and seems to be feeling pretty good (except for the cold she has right now).  She did take some big spills on the floor while she was getting used to the weight and bulkiness of the cast.  Notice the black and blue forehead??

However, she is now walking like a champ and is so close to standing up on her own again (without pulling up).  All in all, casting life is just like normal life for us, thankfully, although there are bigger clothes and less baths.  Sponge baths haven't gone that well yet, but hopefully, she will get used to them soon.

 Also, we switched our little love from a high chair to a booster seat at the big kids table!

I've said from the beginning that I am so grateful for our family and friends.  They really do care about us all so much and help to take really good care of us!  In fact, a couple friends of mine threw Savanna a casting party this past weekend!  It was nice to see everyone, and it was great for them to honor Savanna and help her to begin her healing journey.  Plus, we now have some new cool decorations for Savanna's room!

Here are some of Savanna's best buds, many of which she has known since she was in the womb!

(Left to Right: Jolene, Ian, Sabine, Savanna, Eden, Maya, Emery, and Sachi)

Here's a photo with her daddy after her casting party.

And, here's a super sweet decoration that everyone helped make to show how much they love Savanna.  Everyone at the party used finger prints to form hearts!

I can't wait for when we get to have another casting party in another year or so when Savanna's final cast comes off!  :-)

One month exactly until her second cast!

Casting Life - Days 1 through 3

Savanna woke up normally the first morning after the casting, like she wakes up other mornings, with super cute babbling.  She had slept around twelve hours the night before due to her big day.  I hope the new pillow in her crib helped!  (It's a small throw pillow with a pillow case.)

Friday (Cast Day #1) was a good day, but it started out kind of rough after she was out of the crib.  She knew she used to be able to sit, crawl, and walk, but that morning it was suddenly a lot more difficult.  We estimated that her cast probably weighs around four to five pounds, which is around 1/5 of her weight.  That's quite a bit!  So, at the beginning, we just hung out sitting and playing with the iPad.

As the day progressed, so did she!  Look how she was moving by the end of the day...

Everyone says that there is a learning curve to life in a cast, and they are right.  It's been quite challenging to say the least.  Day #1 in the cast was rough but okay, Day #2 was possibly the worst, and Day #3 (today) has been better.  Things we've learned about life in a cast so far...

• The first couple of days can be really rough.  When you are used to seeing you little one move around pretty well, and all of a sudden it seems like they have been setback several months, it's tough on everyone.  She has been falling A LOT these first couple of days as she gets used to her new center of gravity and extra weight.  These falls tend to be pretty hard falls too because she is not used to "falling safely" and catching herself with the extra weight and bulkiness.  Also, getting up is more challenging.  Savanna kept getting frustrated when she couldn't get up because her legs kept sliding out from under her.  Also, she had recently learned to get up without holding onto something, but she can't do that anymore.  I know she will be back to doing it soon though.
• Eating brings new challenges.  
• Her highchair with a straight back was too constricting for her.  I had to switch back to her old highchair that is slightly reclined.  However, in both cases, the tray is at its maximum, and we could still use more room.  Also, with her leaning back slightly, it's hard to get as much food to her mouth (since she mostly feeds herself).  Needless to say, I may be in the market for a different type of highchair.
• She gets full a lot faster, and then her stomach hurts.  Thank goodness for the cut out on the front of the cast, but it still is pretty constricting for a girl that likes to eat like she does! :-)  After every meal now, she starts to fuss or cry to get out of the chair quickly, and then we have laid on the floor together a few times to give her stomach some space.  This morning, she just walked around a bunch after she ate, and that seemed to help.  At dinner two nights ago (Day #1 after casting), she decided to walk and eat!  

• We are now trying to feed her smaller meals more often to help with this problem.

• Diapering is actually much easier for us (thankfully!) than I had heard.  She is in the same diaper size still, and all we need to do is make sure it is tucked up under the cast.  Pants with elastic that can fit over the bottom of the cast are great.  If they don't fit over the cast, then everything may start to slide off of her. 
• Anesthesia (and/or surgery) can cause a babe to have gas (or maybe it was a coincidence??).  Savanna didn't have a great night of sleep her second night home.  She was also likely still getting used to the new cast.  
• We have heard that kids will likely go up a shirt size in a cast, but Savanna went up two.  She is now in 3T shirts and 18 month to 24 month pants.  I'm so glad for the hand-me-downs that I was given recently.  I didn't think I would need 3Ts for at least a year!
• She gets tired more quickly because of the extra weight and falling, so we try to take breaks more often (if/when I can get her to sit still!).

All in all, it is getting better.  She slept great again last night.  I know that with each day she will continue to get stronger and stronger.  :-)

Wish us luck for our first sponge bath attempt with a toddler!!

Casting Day is here!

Wow... what a long day!  We started bright and early by waking up at 4:00am so we could arrive at the hospital before 7:00.  Once we got to the hospital, we were sent up to our room where Savanna's vitals were taken, and her family medical history was reviewed.  Photos from the hospital room...

About 30 minutes later, we were sent up to the pre-op area.  While up there, Savanna was given a "Knit Rite" shirt to put on.  We were calling it her muscle shirt!

 
Then, we put another mesh sock tube top shirt on her that had arm holes cut out of it.  These shirts are put on her to help protect her skin from the cast.

Next, the anesthesiologist talked to us for a bit.  We also talked to the doctor's scheduler who set up Savanna's next casting appointment for Feb. 27 (wow, it seems so soon already!).  Then, the doctor checked in with us.  Savanna got to pick out a new toy in the pre-op room (they really get spoiled there!).  I got dressed in scrubs to go into the OR with Savanna while she was sedated with gas.

After she was sedated, we were sent to the surgical waiting area.  During our wait we got to meet some other families whose children were also being casted that day.  It was nice to swap stories and to get advice from those more experienced with casting life.  Finally, after about an hour, we were told to come speak with the doctor.

The doctor said that Savanna did great.  She did so much better than he had expected too!  He took an x-ray after he got her in the cast, and guess what??  Her curve appeared to be nearly straight!  I asked him to ballpark a curve number at this point, and he said he would guess UNDER 7!!!!   That is amazing to get that kind of correction in a first cast!!  See, I knew her spine was more flexible than she was showing while she was awake!  Mama knows!  Now, this correction is not permanent at this point of course, but it is a great start and bodes really well for the future.  :-)

After meeting with the doc, we were sent back down to our hospital room where Savanna would arrive soon, after she got out of recovery.  Once they brought her to us, she was definitely groggy but okay.  They set her on my lap on the bed and gave me a cast dryer to hold under the covers to help start drying out her cast.

After about 30-45 minutes, we headed downstairs to the cast trimming room.  Before we got to the cast trimming room, we had to make a stop at the Bear Den.  What's that, you ask?  Only the coolest room in the whole hospital!  It is a room full of "Build a Bears" and hundreds of different outfits for them!  Here's the one we picked.  Also, here's the other fun stuff Savanna was given (see? spoiled! :-) ).  Every time Savanna has to go back for a new cast, she gets to pick a new outfit for her bear!

By the time we made it down to the cast trimming room I think it was around 11:30am?  Let me just say that by this point, Savanna had not drunk anything since 5:15am, had not eaten since dinner the night before, and had been awake since early that morning.  However, she was just an amazing, amazing tolerant little lady.  She let multiple people pull and cut at her cast, which included trying three different types of shoulder straps and the addition of and removal of extra plaster, and she didn't cry but once or twice.  (Her doctor said she was a "superstar patient"!)  The casting trimming lady then added Moleskin to the edges of her cast to help protect her skin from the rough edges of the plaster.  Some people call it "petaling."  (My little flower!)

Next, we got to choose a color of Coban to wrap around her cast to help keep the moleskin in place and help with the roughness of the plaster.  We choose purple!

Then, we went back to our room where Savanna finally got to eat and drink.  Finally, it was time for us to go home.  She did great on the ride home and slept a bit.  She only cried at the end of the trip because she got too hot in the carseat.  We made it back home around 2:30pm.  What a day!

She ate dinner around 6:00 that night, was in bed by 7:30, and was out cold until 7:30 the next morning!

Pre-op Day

Savanna's pre-operation (pre-op) appointment was at 10:00am, so we left home around 8:00am.  After we arrived at Shriners Greenville and checked in, we hung in the main lobby until we were called.  In the lobby, I found the hospital's magazine, Leaders in Care.  Page 2 had an article on casting...  Check it out!

The full article can be found >>here<<.

Once our name was called, we went back to the clinic to meet with a nurse.  Savanna's vitals and family medical history were taken, and then she was sent for x-rays. After her first set of x-rays were done, we met with the doctor.  He is a very nice man who is OBVIOUSLY extremely smart.  We gave him Savanna's history starting from before she was even born!  (See >>my first post<< if you want a refresher...)  After her history, his exam of her, and his review of the x-rays, he says, "Yes, I think she is a great candidate for casting.  We should get her started in this process."  I say to him while laughing, "Well, that's a good thing because we are coming for casting tomorrow!"  He then says, "Well, I guess I do a good job of filling out my schedule!" :-)  It was funny and brought a little bit of levity to the situation at hand.

After that, he recommends a couple more x-rays, so back we go to the x-ray folks.  Her first x-rays that day were taken with her sitting facing forward and sitting facing sideways.  Nothing looked out of the ordinary, except for the obvious scoliosis.  Her second set of x-rays were of her standing, one of her pelvis (he wanted to make sure her hips looked okay since she had been breech), and finally a bending x-ray.  The bending x-ray is basically where the doc holds a crutch-like apparatus to her side while he attempts to somewhat straighten her.  The standing x-ray showed a curve of approximately 52 degrees (worse than the 43 degrees from 2 months prior) with an RVAD of around 35 degrees.  Her pelvis looked fine.  Her bending x-ray, however, didn't look too promising as it appeared her spine may not be too flexible.  I was really surprised by that, because she is so flexible everywhere else in her body!

The doc then says that she will likely have to be casted for two years, not the one year we had hoped for.  He isn't that big of fan of bracing, so casting it will be.  Also, she will likely not have more than a 1 or 2 day break between casts.  Not good news to our ears either.  However, if this is what we need to do to get her spine all fixed up, then that's what we'll do!  He mentioned that she had less than a 1/3 chance of being "cured," but I've heard from other folks that "cured" to him a is zero degree curve (no curve period).  I think we will be really happy if we can even just get her under 10 degrees, which likely won't progress anymore.  I have high hopes for her!

Here's a photo of Savanna playing on the hospital's interactive play screen.  It's really neat and reacts wherever you touch.

Here's a photo of Savanna's last bath for 6 weeks!

Casting day is next!!!

Casting day is almost here!

Wow... It seemed like it was so far off, and now casting day is in 3 days!! 

Everyone is asking how I am holding up.  Honestly, I have mostly good days, but also some bad days about it all.  Most of the time I am feeling like, "We are going to do this!  It will be challenging, but it will be successful!"  However, on other days like one last week, when a pediatrician asks me if Savanna had a genetic screening to rule out other issues, it freaks me out a bit.  I mean, we had an MRI scan that showed something little worth watching, but no other issues.  Do we need to do more screening now and possibly uncover something else?  Geez.  We'll have to see.  It won't be happening this week anyway.  Like I said, it's mostly good days, but as casting day gets closer, my anxiety gets heightened a bit...

Thank goodness for our wonderful friends and family and for the new folks I have "met" in my Facebook support group.  It's been wonderful to hear from others that have been through this before.  A couple of my friends are even hosting a (post-)casting party for Savanna to celebrate her and to help begin her healing process.  There may even be some cast decorating going on! :-)

Thankfully, Savanna is such a trooper.  I hope she'll be able to roll right through it all like the little boy in the video below.  This is 24 hours after he has his first cast applied... Amazing!  Kids are so resilient!  

"A child with Infantile Scoliosis in a Mehta Method Cast"

I'm so incredibly thankful for the woman that started the Infantile Scoliosis Outreach Program (ISOP).  She has been working tirelessly for the past 10 years to bring this Mehta casting method (that Savanna will have) to doctors in the US.

Wish us luck!  I'll provide an update later this week as soon as I can.  Thanks for reading!

Getting ready for Cast #1 and Items to Bring to Casting

I have been getting many questions from friends and family about Savanna's casting.  There is a great 2 minute news story that provides some information about how the doctors will put the cast on her.  Please see... "For Very Young Children, There’s A Way To Cure Scoliosis Without Surgery"
http://newyork.cbslocal.com/video/7472136-for-very-young-children-theres-a-way-to-cure-scoliosis-without-surgery/#.T_dn2WUTFFA.blogger

 

Also, here's a great 2 minute video on casting that I saw at http://theinfantilescoliosischronicles.blogspot.com/2012/07/video-about-how-casting-works.html (This blog has been a GREAT resource to me!)

After watching these videos, I am still scared about what's ahead.  However, I definitely feel more empowered.  I think I am more nervous about the anesthesia than anything.  Also, learning how to live life in a cast will be challenging too.  There will be no baths (other than sponge baths), no swimming or playing in the sand, difficult diaper changes (she may wear two - one bigger and one smaller), no squishy hugs, and a potential for skin problems.  Thankfully, we will have a break every two months where things will be back to normal for a bit before the next cast.  We'll have to plan a beach trip during a casting break in the summer!

I've heard that this process will be harder on me and Savanna's dad than it will be on her, and that's okay.  Better for me to feel scared and sad than her!  I have also heard that the first few days to a week are the hardest.  So, if we can make it through that (and we will!), we will all be just fine.  Because Savanna is such a chill little girl too, if anyone can handle the casting with flying colors, it will be her.  :-)

Here's a picture of a little girl (from the blog mentioned above) in her first cast.

I'm sure Savanna's will look very similar.

I've been putting together a list of items to bring to the casting appointment.  Here's what I have so far...

• 2 Big bibs (to protect the cast from food and/or sickness)
• Size 3 and 4 diapers (She's currently in size 3, but we may need something bigger.)
• Size 24 month shirt x 2 (She's currently in 18 month clothes, but will likely need something bigger after the cast is in place.)
• Size 24 month pants and 18 month pants, elastic
• Size 24 month pajamas
• Shorts
• Folder containing
• Recent medical records/x-rays
• Immunization records
• Insurance card
• Savanna's social security card
• Name and address of her pediatrician and pediatric orthopedist
• Questions for the casting doctor
• Lovey (her dog Spunky)
• Food for lunch and snacks for her and us
• Water in sippy
• Blanket
• A couple of toys and books
• iPad with charger
• Camera/phone with charger 
• Change of clothes for us
• Baby powder (helps to get plaster dust off)
• Baby washcloth (softer then the hospital's)

Over the next 12 days I plan to be doing more research and, just as important, I plan to read as many success stories as I can.  These will help to bolster my comfort and confidence in what we're about to go through.  Please continue to keep us in your thoughts and prayers!

We've only just begun...

Savanna is a super sweet, super cute 18.5 month old little girl.  She will be 19 months when she gets her first cast.  Why does she need a cast?  She has been diagnosed with Progressive Infantile Scoliosis, and casting is a gentle, non-invasive way to encourage her spine to grow straight.

We have had (and will continue to have) so many questions!  Thankfully, I have been able to do tons of research.  There are many families that have already gone through what we are going through, and there is a great outreach program called ISOP (Infantile Scoliosis Outreach Program) at http://www.infantilescoliosis.org/ that has tons of information.

I have started this blog to hopefully answer some of the questions of our family and friends, and also to provide information to other families in our shoes.

A little background on Savanna...  She was a breech baby.  No matter what I did (hips raises, prenatal yoga, rocking on hands and knees, acupuncture with moxibustion, attempted external cephalic version, etc.), nothing worked to get this girl to turn.  I felt her head in nearly the same spot from 30-39 weeks gestation.  Looking at the scoliosis she has, and other issues she had early on such as torticollis and slight plagiocephaly, I believe her breech presentation may have had a hand in all this.

When she was six months old, we noticed a hump in her back on her left side.  She had an x-ray at around seven months, and we found out she had infantile scoliosis.  It was not yet considered "progressive."  The hump we felt is actually where the rib cage slightly protrudes in the back due to the curve and rotation in the spine.  Her curve (Cobb angle) measured approximately 28 degrees with a rib vertebral angle difference (RVAD) of 14 degrees.  Since 80-90% of infantile scoliosis cases resolve on their own, her doctor asked us to come back in four months for another x-ray so we could see if the curve was going to resolve.

When she was 11.5 months old, we went for her second x-ray.  Her curve measured approximately 23 degrees with an RVAD of 12 degrees.  So, all seemed to be going great.  Her curve appeared to be improving.  We were optimistic that we would continue to see improvements, and so we were told to come back for another x-ray in six months.  We figured we would have x-rays every six months until her curve was gone. 

May 2013 - Curve at 23 degrees

We started physical therapy for her around this time to help with unrelated (but maybe related??) sitting up, crawling, and muscle tone.  Around five months after the last x-ray, her physical therapist and I felt that Savanna's curve may be getting worse (or at least not getting better).  However, we decided to really throw everything we had at the scoliosis, in the hopes that we could present her best spine possible at her next x-ray.  I started taking her to the chiropractor once a week during the last month before the x-ray, and we ALL felt that she was improving.

In November 2013, when Savanna was 17 months old, we went for her next x-ray.  I wasn't even worried about the appointment because I felt she had improved so much.  After the x-ray, the doctor came in to let us know the results.  He told us that her scoliosis was now progressive, and her curve was at approximately 43 degrees!  Wow...  I cannot explain the shock, sadness, fear, and helplessness that my husband and I felt.  Maybe if I had prepared myself for this, I would not have been so blind-sided.

November 2013 - Curve at 43 degrees

Her doctor recommended an MRI scan to rule out any underlying issues that may be causing the scoliosis.  If the MRI was clear, then we would proceed to casting.  The MRI scan wasn't completely clear because there is a small syrinx (cyst) in her spinal cord, however, the neurosurgeon who looked at the scan said the syrinx is not a cause for concern at this time.  We will have another MRI in six months just to check on things.

So, we are on to casting now.  From the research I've done, it seems that she may need to wear a series of casts over a period of hopefully only a year.  She'll have each cast on for 6-8 weeks, and possibly have a few days of a break before the next cast.  After her curve improves to a certain point, then we will likely move to bracing for possibly a year.  I am writing all of this before we have even consulted with the casting doctor, so this is all subject to change.

Our pre-op appointment is scheduled for January 15, 2014, and the casting is set for the 16th.  Please keep us in your thoughts and prayers!  We need to make sure Savanna stays healthy, and we need this casting to work!!