Cast #2 and the dreaded MRI

For more background information, please see: What is going on with Addison?

October 13, 2014

When we last left you we were heading into the removal of cast 1 and our weekend of freedom.  IT. WAS. GLORIOUS. The weather cooperated and it was a perfect warm but not to hot and a little windy cape cod weekend in late August. 

CAST OFF AND THE MRI

We started out Friday getting the cast off in Boston at 8am followed by the dreaded MRI at 10:30am. Remember, this MRI would let us know if there are any underlying issues driving Addison’s curve. First stop at the “cast room” to saw this thing off! Naturally Addison is very scared but Joe the cast tech does his best to calm her and make her laugh. We are reminded that cast saws don’t spin; they vibrate, so there is never a danger of her being cut. Two quick saws and she is free. Her skin looks profoundly damaged and irritated. One of the biggest casualties in this casting process is the damage to the skin. A nurse comes to examine it and see if Addison is in good shape for her re-cast on Monday. The good news is she is (no broken skin or lesions).

We head to the MRI room. By the time we get there the air has had enough time to let Addison’s skin know it is ANGRY. She is itching like crazy and just getting more and more red. They’ve told us this is normal and actually she is in better shape than most kids. We do what we can to distract her. The wait for the MRI is long, sitting in the tiny room giving all of her medical history again. This time they want to give her the IV while she is awake (no fun).  One parent can stay with Addison through this. We decide it’s Dad’s turn to hold her hand through the scary stuff. So he is suited up and off they go for what will be a very long hour. The MRI tech will painstakingly go through every vertebrae in A’s spine to look for abnormalities. Also, they will check for a tethered spinal cord or any other possible damage to it.

Off to the waiting room I go, alone. I’ve decided MRI’s suck. I feel while they could deliver good news, it seems its never just ok news. Its good or it’s devastating. So while I wait I am having that moment when you think, “it can’t happen to me”, but there you are waiting for your 2 year old to come out of an MRI and realize it very damn well could happen to me!  As I hang on to the edge of a black hole of bad thoughts trying not to get sucked in, the Children’s Hospital clowns arrive. “Ugh, not now. No clowns.”, I think diverting my eyes to the floor. This room has no children in it. Just long faced parents sitting silently. The clowns launch into a gentle, age appropriate, elevated level of humor that you cannot help but laugh. Suddenly I was gently lifted out of my funk, and was smirking along with all of the other parents. It was impossible not to. Today the clowns were for the moms and dads. Excellent.

Addison is in recovery now and it takes her a little longer than usual to come out of the anesthesia. She has only had the gas before today and this was an IV sedative. When she finally wakes up she is absolutely loopy, laughing, talking about Elsa and Anna from Frozen and making zero sense. It was pretty funny to see my 2-year old like this. Then that wore of and she cried hysterically for a while. Finally that wore off and we were ready to head home.

INTO THE WATER

First book of business once we get home is a bath! It’s been 2 months since she was had a full body bath. Tub full of bubbles and warm water, then the several lotions and potions I have found to try to help that red skin heal in two days. I used Damascus rose with lavender and chamomile oil as well as “Emily Skin Soother” which is an all natural balm containing olive oil, beeswax and herbs. They were helpful although I am not sure anything could have fixed that skin in 2 days.

We met friends at the beach both days. Her skin was in such tough shape that I cancelled plans to meet friends at their pool. The chlorine seemed like a bad idea. Even the sunblock was too drying. Addison only had one bathing suit this year that was a gift. Once we knew about the cast I didn’t bother getting swimsuits. So, here she is in her brothers UV safe one piece.  TWINS!

CAST #2 GOES ON & THE MRI IS NORMAL!

The weekend went by way too fast and here it is 4:30am and we are driving back to Boston for our 6am pre-op time. Again only apple juice for Addison until after the cast is on. We are all getting used to the drill: wake up ungodly early, 1.5 hour drive, park, check in, wait, wait, wait. 

It’s my turn to head to the OR with Addison. Unfortunately we did not luck out this time with her falling asleep ahead of time. So she was screaming and crying as I held the anesthesia mask over her. I doubt this part will get easier.  A quick 45 minutes later and her surgeon emerges to tell us she did very well and he was happy with the results he got getting her straight in the cast. He also delivered the news that her MRI was normal!! YAHOO. So Addison officially is diagnosed with Idiopathic Infantile Scoliosis. Which means we don’t know why it’s curving. This is one of those times where no news is good news. If there were something else going on in her body, the battle to straighten her out would be significantly harder. We have a very good chance that this cast process will retrain her spine to grow straight.  Naturally we stared at her back all weekend debating, “does it look better?” The moment she came out of the cast she appeared totally straight! However as the weekend went on we could see the bump at her ribcage grow as her body settled into not having the cast to hold it straight. We asked Dr. G. when we would re-xray to find out how she was doing, because it’s entirely possible that this is doing nothing. It’s not probable but its possible. He informs us that there is no reason to re-xray until we have been doing this for 10-12 months. Then based on that we decide if we move to a brace or if we should continue with the casts.

We head down to recovery to see Addison and she is pretty hysterical. These drugs send her into a tizzy when she is coming out of them. So for 45 minutes she screamed. Unfortunately, we were also pretty stressed out ourselves. We had been up since 3:30am and it was now noon, our conversation with the Dr. did not deliver the totally unrealistic expectations I had (that she’s miraculously cured and no more casts), seeing her back in the cast and her screaming bloody murder was also depressing and very stressful. 

We go over every edge of the cast to make sure nothing is sharp or digging into her skin. Everything looks great; thank god no extra cutting is needed. John the hippie nurse stocks us up with extra moleskin for the cast’s edges as well as some apple juice for the road. He was so calming, slow moving and kind.  He slowly attended to Addison’s IV and heart monitor wires, which made her scream more. He slowly removed her IV that splashed blood onto her new white t-shirt that we can only change once a month. He told stories about his own family. He is a saint. However for any type A people out there, you may understand, in these overtired, stressful situations we like fast moving, take charge types that are actually abrupt and maybe a little rude. Just get it done! AHHHHH. John was chamomile tea in a tequila shot moment. I hope we see him again through this process when Addison is not screaming her lungs out. He was interesting to talk to. Finally the screaming stopped and we got A dressed and headed to the car.  Back to life in the cast. Total bummer.

Thanks to all for reading about Addison's curve and following us along our journey.

xo

Settling in to the new normal.

For more background information, please see: What is going on with Addison?

August 8, 2014

Our new normal comes with a list of new ways to live life. Just to be clear, none of this is a complaint. I am forever grateful that there is a treatment available to Addison that could make a significant difference as she battles scoliosis. Also, my goal for this blog is to not only share our experiences with friends and family but to hopefully help some other mom and dad out there who may be frantically searching the internet for answers of how their child will live in a cast for 12 months. 

We have all adjusted to the new normal; bibs are in and sand and water is out.  The summer of little outdoor play hasn’t been easy to be honest. Addison has an older brother who is just 3 and full of energy.  It’s a challenge. They both ask to go outside all day long but overheating and skin rashes are real concerns. We have come up with some ways we can be outdoors and keep Addison cool but when it’s 80 degrees and 80% humidity, it’s just not the day to be out there. At times I find myself hoping this year flies by.  However children are this small for such a short period of time it seems counterintuitive to wish it away.

Keeping the cast dry and clean

Bibs: The daunting task of keeping a toddler dry and clean seems futile. Nothing can fall into the cast due to the risk of skin irritation (imagine crumbs rubbing against your skin for 2 months). We have had a few close calls with some large cups of water left in reaching distance but like I said, the new normal is becoming second nature. Addison has a bib on for just about everything from eating to bathing.  At the recommendation of another mother, we tried Bumkins bibs and art smocks. We prefer the art smocks. They have sleeves and tie in the back giving a little extra coverage (and piece of mind) that the cast is protected.  They are available on amazon.com and bumkins.com.

Play: A cool, no sand or swim summer is a downer for all but especially difficult when you live in a beach community. We are definitely not the popular pick for play dates on sunny days. Summer days are typically too hot for Addison to be outside for very long. During one particularly long stretch of humid days in the 80’s, even I was sad and stir crazy in the house. Enter creativity out of desperation, ice in the water table! I pulled the plug so the water drained as it melted, and by the time they were bored the ice was gone.  We have become regulars at the Children’s Museum, found a few indoor play spaces and playgrounds that are sand free. One has mulch but we will make that work until I find mulch down her shirt.

What is ‘fun’ and ‘play’ has been redefined.  Too much TV time is definitely a danger. I’ve hunted down all kinds of tchotchkes to pull out when we have been stuck in the house for too many days.  Simple, small toys can break up a long afternoon; mini slinkys, wind up Nemos, and anything ‘Frozen’ brings smiles. I’ve had to become crafty and look up ideas on Pinterest (this is SOOO not me). Would you ever let 2 toddlers loose on a bunch of jello jiggler shapes in your kitchen?  It’s a mess! However very fun, edible and clean up is easier than it looks. We go grocery shopping ‘for fun’ and play a version of eye spy as we make our way around filling the cart. We talk about the color, shape and quantity of everything in the cart. People at Stop & Shop must think I’ve lost it, and in that moment I know that I have. But we’ve used up the afternoon staying cool and not sitting in front of the TV.

Bath time: Bath time for kids is fun. There are toys, bubbles, water and splashing is encouraged. They loved the tub! 

We are in the new normal now. Baths are solo, and carefully executed in the kitchen sink. Our first day home in the cast, I gathered what we would need: bib, large beach towel, oversized bath sponge for cushioning, a cup to rinse the soap out of her hair and of course, Nemo and Dory. I happened to grab a hot pink beach towel and the sponge we found is in the shape of a turtle. Addison’s reaction to the set up “Pink! So pretty”, we got her up onto the counter and showed her where she would lay down, “Turtle! Cute!”  Apparently the only people worried about all of this change are the adults, because Ms. Addison is just fine with the new accommodations. After her hair, Addison stands in the sink to have the rest of her body washed. The cast and t-shirt remain on, so we do the best we can without getting them wet.

We use a child sized hairdresser smock for bath time. They wrap all the way around the cast (unlike regular bibs) and fasten tight at the neck which protects from drips.  The oversized bath sponge is available at Babies R Us and the smock can be found at any beauty supply store.

Normal things still happen
Addison turned 2 and Matthew turned 3!

The reality of the new normal*

While there is a lot of focus on the cast because it is the most intrusive, the real issue lurks inside of it, Addison’s curving spine. Our new reality is, we do not know if this cast will cure her as we still do not know why it is happening. The first cast comes off this Friday.  Before we head home we will go to radiology for a spinal MRI. This will be done under sedation. The MRI will check to see if her spine is structurally normal, if her spinal cord is somehow compromised and if there are any vertebral malformations.

Most cases of scoliosis are considered idiopathic and occur during childhood without a clear cause. This is what we hope for as a diagnosis. 

A small number of children develop a lateral curvature of the spine even before birth, during the period of fetal growth in the womb. These cases are referred to as congenital scoliosis, which means that abnormal development is the cause of the condition. Congenital scoliosis occurs when bony portions of the spine fail to form properly or normally separated segments fuse together during fetal development.  This is a concern to us because chest x-rays were taken of Addison’s lungs when she was 4 months old to check for reflux issues. An approximate 20-degree curve can be seen on that film. At 22 months, Addison’s curve had progressed to 33-degrees which is when we cast her. This curve is significant however not as severe as many children who have curves of 60+ degrees by this age. Treatment for this type of scoliosis can involve surgery and metal rods placed around her spine.

Another major type of scoliosis is neuromuscular scoliosis, which means that it is caused by the presence of a neurological or muscular disease, such as cerebral palsy or muscular dystrophy. Although we have not seen any evidence of these or other neuromuscular disorders, there is such a wide variety of these types of diseases that may cause neuromuscular scoliosis. The clinical presentation and severity of these conditions is extremely variable. Treatment for neuromuscular scoliosis is unpredictable since you are also treating a neuromuscular disease.

*This information as well as further definition can be found at www.childrensorthopaedics.com/Scoliosis.htm

For now there is no reason not to be positive. We have concerns, but we wouldn't be parents without them. Today, I am grateful for Boston Children's Hospital and for a sunny forecast for our weekend out of the cast.

Thanks to all for reading about Addison's curve and following us along our journey.

xo

Cast 1 is on and we all survived.

For more background information, please see: What is going on with Addison?

June 27, 2014

How appropriate for us to start our casting journey on June 10! June is National Scoliosis Awareness Month! This beautiful 3-minute YouTube video shows how resilient kids are and when faced with something that would make most adults shut down, they dance and play right through it. 

CLICK HERE TO SHOW VIDEO

HERE WE GO
When we first found out Addison would need a cast we couldn't imagine what life would be like with her in it for a whole year. We were panicked about how upset she would be about living her life with this foreign object attached to her. Would she miss baths? Not be able to run, jump and play with her brother the same as she had? Would she be able to sleep? Would she wonder why mommy and daddy weren't helping her out of this? And worst yet, would she be unhappy? I think we dreaded that the most; an unhappy child. However, none of this happened.

We decided to stay in town the night before just to alleviate any unnecessary stress of driving up from the Cape. We stayed at Hotel Commonwealth, which was a treat. Addison has not stayed in the city before. To our surprise, her favorite part was seeing all of the bicycles! Insert squeals of glee, BICYCLES MOMMY!! I do want to openly thank Hotel Commonwealth for their amazing generosity and kindness. They were aware we were staying in advance of going to Children's Hospital. We were greeted by great people and a room upgrade to a beautiful suite. Also their AGM sent us a thoughtful note after our stay with his well wishes for Addison. Their kindness was wonderful. I also want to note that they were not aware of any connection I once had with the hospitality industry in Boston. No quid pro quo, just hospitality at its best.

We arrived at Children's at 7:30am. The usual pre op stuff and then everything we could do to entertain Ms. Addison until they took us in 2.5 hours later. Dr. G. was delayed an hour so we did start to run into Addison complaining she was hungry (it was now almost 10 am and she had not eaten since the night before). Nemo and Dory on the iPad to the rescue. We had been warned that taking a baby in to be anesthetized can be traumatic. Only one parent can go in, your job is to hold the anesthesia mask tight to her face until she is out. Usually toddlers are crying hysterically because they don't like nor understand the mask on their face and then suddenly go limp. I will forever be grateful to my darling daughter for falling asleep at 9:55 am for her morning nap. Five minutes later I quietly carried her into the OR, laid her on the table with her favorite bunny, let the anesthesiologist put the mask on and when she was officially out I gave her a kiss. As her Dr. said when I left "It doesn't get any better than that". No one was crying. Phew!

RECOVERY
Well, no one was crying until she woke up. To our happy surprise Addison was most upset by the IV cuff and the wires stuck to her chest monitoring her heart and oxygen. That was good news because those are things we can remove! Dr. G. visited us to let us know she did very well while under and he was really pleased with the "push" he was able to get on her spine. They actually push and twist the spine to get it straight and then the cast holds it in place as it grows. It is unbelievable to me that there is no pain involved. But there isn't. And that is great.

This 2-minute video gives a quick explanation and visual of how the cast is applied and what it can accomplish.  CLICK HERE TO SHOW VIDEO

Once out of recovery we were off to the pediatric floor to play for the day and night. They ask you to stay one night after the first cast is put on to make sure everything is going ok. We had a good day/night; a visit from A's dear Aunt Jenny who brought toys and cookies, lots of playing and helping Addison regain her center of gravity. She toppled a few times from being newly top heavy but quickly recovered.

The cast is very high up under her arms so she cannot put them down all the way.  We had them cut the cast a bit (umm, picture an awake toddler and a cast saw). It helped but since her curve is high the structure on her upper back must be as solid as possible. There are limits, it's a cast, we need to just deal with that. Once in the car seat it was only worse! I wish I got a picture, the car seat pushes the cast up even more so Addison's hands were resting on top of her head because she didn't have anywhere else to put them :-(  Quick fix of stuffing bunny and baby under each arm for support and she fell off to sleep. I'll have to play around with solutions, maybe a boppy or neck pillow under her arms. We may not be taking too many long trips this year.

BACK HOME

Once home, life was back to normal and we were amazed how easily she adapted. Addison and her older brother Matthew were back to chasing each other around the house. As most big brothers do, Matthew likes to constantly tackle his sister. We did our best to stop it and warn them both. She landed on him once, it hurt more than usual, they got the hint. Now he knocks on the cast "That's hard". Yes. It. Is.  Her clothes are all 2 sizes bigger.  She has to wear a thermal wicking t-shirt under the cast all the time so we are learning what works best for summer. Most outfits make her look like a cross between the kid in the snowsuit from A Christmas Story who couldn't put his arms down and a pee wee football player. Our only hope is that under all that bulky plaster and fiberglass Addison's little spine is finding it's way to grow straight and strong.

My next blog entry will include how we addressed checking the cast before leaving the hospital, decorating the cast, dressing, diapering, bathing and entertaining our almost 2 year old through the summer without water or sand!

Thanks to all for reading about Addison's curve and following us along our journey.
xo