The Curious Incident of the Bucket of Sand and the EDF Cast

If you have a child in an EDF/Mehta cast you know there are a few innocent, even wonderful things that are now looked at as products of the devil himself: water, wood chips, rocks and sand. Thanks to a child who was old enough to know better, we came face-to-face with that devil called sand.  To say I was not happy was an understatement.

shocked_face

A bucket of sand was dumped all over Nora’s head. Sand quickly made its way all over inside her cast. Sand inside a cast is the equivalent of shards of glass if it remains in there. Children have had to have casts removed early because of sand. It can quickly break down the skin which can be a big problem and delay casting. Skin has to be in good condition to be casted.

shocked-face 2

So anyway, we rushed home to try and fix the problem.  I did everything I had heard to do when something is in a cast that shouldn’t be. We removed her knit rite under shirt, I wiped away as much sand as I could, I used a hair dryer on the cool setting to try and blow it out, I “flossed” the cast with pantyhose and wipes. I thought we were ok till that afternoon when I looked again, still so much sand everywhere and her belly was red from it.

It was then when I inquired with my online support group family of what to do. That’s when baby powder also known as talcum powder was suggested. Our surgeon was also quick to get back to me with the same baby powder suggestion.

Let me tell you folks, your very first step after removing as much sand that you can visibly see, is to pour baby powder into the cast from every angle be generous. Then I found a gentle little twist and shake of my sweet Nora helped really get it in there. The baby powder has this magical way of adhering to the sand and releasing it completely from skin. My next step was to use the hair dryer on a cool setting to blow it out. That was it, the sand was gone!

Here’s what I recommend NOT DOING:

• DON’T do any type of flossing when sand is involved, it just rubs the sand into the skin or pushes it into the padding.
• DON’T use wipes either, you don’t want to get the sand wet.
• DON’T panic and take the cast off, you might be able to save the day.

 

Why I Wish Early Onset Scoliosis Used Any Other Word Other Than “Scoliosis” In Its Name

As soon as someone outside of my new Early Onset Scoliosis Support Family learns my daughter has EOS, they almost always tell me how they know someone with scoliosis. Which isn’t surprising, one in forty people have some form of scoliosis. The key words there are some form.

Most people don’t understand how vastly different Early Onset is from scoliosis that develops in adolescents (the most common form) and adults. Heck I didn’t at first either; the first place I went when we got the diagnosis was The Scoliosis Research Society of the US; which in my opinion is an extremely disappointing organization. The majority of the information they have on EOS is INACCURATE or very outdated. It took me awhile to learn that because why would anyone question an organization that large and with that much authority? It’s an embarrassment and is a huge disservice to patients with EOS and their families looking for information. Much of the information they have on Congenital Scoliosis is also outdated and inaccurate.

But I digress… Why is early onset scoliosis so different from the other forms (and I’m not even getting into where Congenital Scoliosis fits in all of this)? To put it simply…it’s the most difficult orthopedic condition to treat in children. It’s also has the potential to be fatal.  When a curvature over 20 degrees develops in the spine of an infant that is naturally growing at rapid speeds it going to get worse and can impact heart and lung development. Surgery at such a young age will also negatively impact the overall growth of the spine and child not to mention heart and lung development. These things generally cannot be said to the same degree when speaking of scoliosis in adolescents and adults.

The seriousness and vast difference is in part why I wish EOS had some other name. Because everyone knows someone with scoliosis, again, it occurs in one in forty people, and the large numbers of those are living with mild forms and are able to manage their scoliosis and that’s what people often associate scoliosis with.

I’m just a mom who is trying to take this diagnosis we were handed and find ways to educate the world, help others along their journey with this diagnosis, and ultimately make a difference. Knowledge is power. Now if only the Scoliosis Research Society could get on board too.

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Summer Is Officially Over – Cast Number 6 Is Here.

We had a great summer with a nice long cast break. It was great to see Nora be able to do all the things toddlers should do. Go swimming, play in the sprinkler and sand box, eat ice cream cones and popsicles without a big waterproof bib, and just be able to get dirty. But that all came to a halt yesterday when we went back to the hospital for cast number six.

I was very nervous about this casting as I knew her curve had progressed. I could see it and feel it with every hug and cuddle. And with every hug and cuddle my mind wandered to what all this progression would mean. I seriously thought about it multiple times a day, every day. This next  casting we would be doing x-rays as well, something we hadn’t done since February.

We were also worried about how she would do with this casting since she had a nice long summer break but also because she was older now and understood more. We tried to prepare her a couple weeks beforehand that she was going to get a new cast. We read books, put a cast on her doll Scully and tried to prep her as best we could. One day I told her she was getting a new cast in a few days and she looked at me and said, “why momma? No cast”. I didn’t know what to say to my two year old but my heart was crushed.

photo 1-1      photo 2

The day had arrived; all things considered she did really well at the hospital pre-op. Post-op was another story. We speak frankly and work closely with our anesthesiologist at each casting and they have tried new things and adjusted things here and there to try and make it easier for Nora coming out of anesthesia but it seems as though she is just one of those kids who has a much harder time than most. It’s a really tough hour or so in recovery where she’s angry, crying, screaming and impossible to console.

photo 3

But we made it through with the help of  Curious George DVDs, the soundtrack to Disney’s Frozen and Popsicles. On the car ride home she was insisting all of us sing Let it Go over and over with the song blasting on repeat. Loking over and seeing her and Matt belting  was the lyrics was the highlight of the day.

photo 4
She had an x-ray out of her cast and one in her cast. It was clear from the x-ray her curve had progressed some like we thought and she developed a compensatory curve in the lumbar or lower section of her spine. A compensatory curve is a curve that is a result of the original curve essentially causing stress or pressure on the rest of the spine pushing it to also curve. The good news is that her spine is still pretty flexible and isn’t rigid yet. As children get older their spines become less flexible. When that happens varies by individual.

photo 2-1

Her surgeon was able to get good correction in the cast, really almost eliminating the compensatory curve and also straightening up her congenital curve quite a bit. This is good and based on that our surgeon thinks we will continue to have success with casting for another six months or so. The bad news is her curve has progressed and we will probably be heading to her first surgery next spring. The big question is what that surgery will be. We just don’t know yet and we basically will have to just “pick one” by weighing out all the risks and benefits of each option and guessing what we think will be best. There is no perfect option and there isn’t going to be either. But we will face that in time.

Her first day in the cast was rough, the summer break had been a double edged sword. Wonderful to be able to do all the things she was able to but too long to be out that she was really unhappy going back into one. She had a tough time getting comfortable sitting or laying down and repeatedly asked “cast off”. Thankfully by day two things got better.

Nora was born into a family of devote Notre Dame fans and with football season around the corner not to mention special duck tape sent to her from her aunt and God mother, Nora’s sixth cast bears the ND logoed duck tape. She’s our little fighting Irish lassie so it seemed fitting. Of course the tape needed just a little more pizzazz, so I dressed it up with some rhinestones and bling. Go Irish Go! Go Nora Go!

photo 2-2     photo 3-1

Everything You Need to Know About Life in a Mehta/EDF Cast That Your Doctors Won’t Tell You

It took several casts before I learned all the ins and outs of what you really should know about your child’s life in a Mehta or EDF cast for early onset scoliosis.

What To Bring To The Hospital on Casting Day:

  • Two sets of clothes, loose, stretchy, and comfy and a size or two bigger. Avoid the onesies at the hospital. T-shirts and stretchy pants are ideal.
  • Favorite blanket, stuffed animal or toys. We have also found it to be a little helpful to have a brand new toy or something to give to our child once in recovery. Our daughter has an extra tough time coming out of anesthesia and sometimes that balloon or new Elmo doll have helped by being good distractions.
  • DVD player or tablet are always helpful and good distractions
  • Extra milk, juice, and crackers and other snacks along with their favorite bottle or cup, mainly for the journey home. When you are able to give your child water or juice in recovery, they might prefer it in their own cup or bottle. Mine always has.
  • Large waterproof bibs. Vomiting is not uncommon while coming out of anesthesia and you won’t want to deal with vomit and a new cast.
  • Gas Drops – most kids have a bit of a tough time coming out of anesthesia. The anesthesia causes gas to build up in their little tummies and can be painful and difficult to get out. The infant gas drops with simethicone help aid in relieving that gas. Be sure to consult with your doctors and nurses in recovery before administering. This tip many have found extremely helpful.
  • If your child seems to be having a tough time with vomiting and/or you see that it’s a problem after every cast, be sure to ask your doctors and nurses about the drug Zofran to help with nausea and vomiting.
  • Tylenol – just in case
  • Snacks and drinks for you and your significant other. While you probably won’t want to eat, I recommend having at least a little something to eat while your child is in the OR. It can be a very long day emotionally as well as in simple hours. You might not get the opportunity to eat yourself for a long time and you will need your energy.
  • Depending on your surgeon and where you live, your child’s casting materials could be simply made of all plaster or plaster with a fiberglass layer on top. In some circumstances if your child has a curve with a low curve degree you might be able to have a waterproof cast for a time period over summer – there are many pros and cons to the waterproof cast and should be discussed with your doctor. Back to the typical casts, they are generally padded on the edges and taped with moleskin and then secured with tape or coban. You can purchase fancy printed duck tapes (get the Duck Tape brand – the Scotch brand is not sticky enough and doesn’t adhere well) and coban to give your child’s cast some fun “flair” . I’ve heard you can even use fabric and modge podge to decorate a cast. That is something you’d want to do at home though.
  • If your child has a knit rite shirt on underneath the cast and it can be removed at some point if it’s not cut and taped to the cast.  Some surgeons cut it and tape it making it so you can’t remove it.  If yours isn’t cut and taped, get an extra shirt from the hospital. Being able to remove that shirt and wash it is highly beneficial for multiple reasons. At least that’s what we have found.  It’s not as difficult as it seems either. Here’s a video on how to go about changing that shirt. If your hospital and/or insurance won’t cover extra shirts you can order them here at a very affordable rate  (scroll all the way down)
  • This is a big one, before you leave be sure you and your nurse and/or casting technician examine the cast to make sure it’s trimmed properly. Check while holding your child and also while your child is sitting. Check to make sure it isn’t too long and hits the hips or legs too much when sitting. Also check the chest bar to make sure it isn’t too high when your child is sitting and it doesn’t hit or come to close to their chin. Make sure it’s not too high under their arms and your child is able to put his or her arms down comfortably.
  • ** If you aren’t lucky enough to get an early casting time and are stuck with a mid-day to afternoon casting.  Many, including us, have found it’s helpful to let your child stay up late, as late as they can and give them food and drink late as well and then let them sleep in as late as possible.  This will help with their desire for food and drink which they can’t have hours and hours before casting.  Late night cookies and ice cream – whatever it tales to fill their little bellies really helps.

What To Expect The First Couple Of Days In The First Cast:

I’m not going to sugar coat it, the first cast can be very hard, for everyone. Even after you read all of this and prepare as much as you can, it’s really hard to know what exactly it’s all like.

  • Don’t be surprised if your little one is upset, uncomfortable, and hard to console, grumpy or frustrated. And if you’re lucky, your kiddo might just be a little uncomfortable and not show it as much. However your child reacts, it’s normal and TEMPORARY. Kids are super resilient. I’m continually amazed at how resilient they are.
  • Their balance might be off not only from the anesthesia but they have also just had their spine twisted and rotated into a straighter shape, it could take a little bit of time for your child to adjust to their new balance. Anesthesia can also cause them to be a little loopy for several hours and that too can throw their balance off.
  • Some kids struggle more than others at first to walk, crawl or just plain get around but don’t worry they will. The casts can weigh between 2-4 pounds! That’s a lot of weight on little ones! But  don’t be surprised if your little one develops super strong legs by time that first cast comes off.
  • In some cases, casted children need to relearn, or  invent new ways to maneuver. For example, getting up off the floor can be difficult or bending over to get an object was difficult but like I said these kiddos are pretty resilient and most will find new ways to accomplish tasks at hand. Be patient and help guide them when they are trying new maneuvers.  If at any point you are concerned your child is having too much difficulty or not being able to do things they used to, don’t hesitate to contact your surgeon or nurse.  That’s what they are there for.
  • Sleep can be tough the first few nights. The first night of a new cast we have generally had Nora sleep with us, that’s probably more to put our own minds at ease. We also have a standard sized adult memory foam pillow in her crib which she prefers to sleep on with her head and half of her back on the pillow. Many kids find a bigger pillow more comfortable.
  • Don’t be alarmed if your child doesn’t seem to eat as much as they did before the cast in a sitting. Those casts are designed to be nice and snug so it makes sense for a child to feel fuller faster in a cast. We have found smaller more frequent meals help.
  • Don’t worry, in a few days your child will be back to doing almost all the things they were before. And you will find a big huge smile on your face when that happens.  Here’s what my Nora was like just a few days later http://youtu.be/ueeOTdRFt2o

What To Have On Hand At Home & What To Do To Prepare For Casting Life:

  • Moleskin – you will need this if and when any current moleskin becomes loose or wears of the cast. You will also need it if you find an area becoming tight and causing some redness to your child’s skin. Adding extra padding and protection will help.  Ask your surgeon or casting technician for extra when you are at the hospital
  • Aquaphor – Our surgeon advised us to use this every couple of days on our daughter’s skin under her cast. We squeeze some fingers in there and try and get a good layer on. It helps keep her skin smooth and from drying out or being prone to sores
  • Extra duck tape or coban
  • If minor skin breakdown occurs, add extra moleskin to the cast in the area where the skin is red or is beginning to blister.  Use Mepilex bandages (these are hard to find in drugstores but are available on Amazon) on the sore or blister type band-aids. Be sure to keep the rest of the skin well lubricated with aquaphor to help prevent further skin issues.
  • Aviation style tin snips in the strongest gauge possible. And in addition, you should watch a video on how to remove a cast with tin snips. I say this in case of an emergency and you have to get that cast off fast. It’s better to be prepared and know what to do in an emergency than to panic and scramble. Since writing about this here, this now something our surgeon suggests to all his new casting patients. Also, if you choose and/or are given the opportunity to remove your child’s cast yourself you will need these. We have found removing the cast ourselves to be a big help in so many ways. More on that later.
  • Speaking of emergencies – talk to your doctor about what you need to know and what you should do in certain emergencies. There are many opinions and advice on CPR and chocking/ Heimlich maneuver approaches to children in casts.
  • Many families have found beanbag chairs to be very helpful for the newly casted children to help them with positioning and comfort.
  • The smaller convertible infant car seats might not work well once your child is casted. They might be too big for the seat or it could hold them in an uncomfortable position where the cast rubs. The Britaxx Roundabout had been recommended to us from other parents. I’ve also heard some hospitals have various car seat models on hand specifically for infants and toddlers in casts and will loan them out.
  • In the event your child shoves something he or she shouldn’t down his or her cast like rocks, food or toys and you can’t reach it with your fingers, the best way to get them out is to first remove the knit rite shirt and see if that does it. If it doesn’t, you will want to thread a pair of panty hose vertically through the cast and “floss” the cast up and down all around. That should pull the little things out. This ‘flossing’ method is also great to use if your child has an itch that just needs to be scratched a little.  If it’s dirt or sand you are trying to get out try using a hair dryer on a cool setting.
  • If you are planning any travel with your kiddo, even car travel that’s a good distance, be sure to bring your “cast upkeep” goodies with you.  Including an extra shirt (if your cast uses a removable shirt) moleskin, duck tape, wipes, a bib, and of course your tin snips.  This was a great tip from a mom whose child got car sick and they weren’t close to home. She learned this one the hard way.

Diapering:

  • Every child is different and every cast can fit and be a little different which can affect diapering. What works for one child might not work others.  Diapering can be a bit of trail and error.  Here are the tips many others have experimented with.
  • Huggies Overnights –just for nighttime diapering. These suckers hold a lot and one of the last things you want to worry about is a diaper leaking up into the cast and having to clean/dry that. We’ve found this to be the best brand.
  • Even regular day time diapers could have a tough time staying up and in place.  You might have to try going back down a size to get a good fit.  Or you might find you have to fold the top over in the back and in the front to fit under the cast and then secure nice a snug.
  • If you find you are having fit issues and/or leakage problems experiment with diapering options. Many moms have remarked that pull-ups stay on better than diapers and I’ve heard a few mom’s swear cloth diapers was their best solution. Some have found using a shoe horn to help push the back of the diaper into the cast in the back to make it secure helps.
  • Poise pads or other feminine pads can be added to diapers for even extra leakage protection and are also a good idea to use in the back of a diaper if your child has any stomach or intestinal illnesses, to help avoid the potential diaper blow out up into the cast.
  • If your child has a diaper leak or gets his or her cast wet try drying it out as best you can with towels or a shammy and use a hairdryer on a cool setting off and on as much as you can.  If you have a knit rite shirt that’s removable, take it off and wash it. If yours doesn’t come off, pull it down below the cast as much as you can and lightly wash with soap and blow dry.

Sponge Baths:

Sponge baths can be a challenge for some especially my child, even after five casts she still despises the sponge bath and so do we.

  • We have tried multiple ways to go about the sponge bath. We were lucky in that she didn’t have much hair for the first 4 casts so we didn’t feel compelled to have to wash her hair with every sponge bath. At that time, we would set two towels in front of the TV (and in the winter fireplace). Get two large Tupperware containers of water. One for soapy water the other for rinsing. We would lay her down on the towel and wash all her exposed skin as quickly as we could and rinse and dry simultaneously. Now we lay a towel down on the kitchen counter, lay her on top of it lean her head over the skin and use the hand held nozzle to wash her hair.
  • Many mom’s have found success great success with no rinse shampoos,  cloths, washes and shampoos, something I think we will try when we get cast number 6.
  • There’s even a fellow scoliosis mom who found the Norwex brand of personal care products including their super absorbent microfiber cloth that picks up water, dirt, bacteria, etc. with no need to rinse to be so helpful she now sells for the company!  If you are interested contact her at wagoner518@gmail.com.
  • The Belly Button- If your child’s cast covers their bellybutton a little it’s not uncommon for moisture to build up in this area and yeast to form.  Don’t worry, it’s not harmful although can have a foul odor.  If you can, pull the shirt back (if there is one) and clean the belly button every day or two with soap and water.  We found q-tips to work great. If it is red and irritated a little aquaphor should help too.

Breastfeeding Tips for Your Casted Child:

  • Yes, you can still breastfeed your child.  Many mama’s have found the cast to be abrasive on mom’s skin – rubbing it raw.  To avoid that breastfeeding moms have suggested the importance of taping the cast. Tape will prevent your skin from rubbing raw.
  • Depending on your casting facility, some want you to wait a few days before taping the cast, in the mean time try breastfeeding with a layered nursing shirt or cami so there isn’t skin to cast rubbing.
  • Be sure to check with your surgeon about breastfeeding (fluid intake) instructions before each casting.  Breast milk is considered clear fluid and has different time restrictions than cow’s milk.
  • Many moms recommend having a support person with you the day of casting. someone who is willing to hold and distract your  child who might be desperate to nurse and doesn’t understand why mom will not let him or her.
  • You will be allowed to breastfeed your child in post-op after your child has been casted.

How to Handle the Summer Heat In A Cast:

  • Overheating and heat rash can be very serious in any child let alone one in a body cast where their little bodies have a tough time regulating heat
  • Consider investing in a cooling vest (http://www.noeledfcastframe.com/2012-09-27-16-54-53/accessories) – these little numbers are custom made and will most likely last the entire time your child goes through the casting process, best of all they are affordable. These vest hold special ice packs to help keep your child cool.  They last for about 2 hours before needing to be refrozen.  The vest is safe and easy to use too. They weight less than a pound and a half and should last at least 2 least two years of casting or more. Here’s a picture of one:
  •   cooling vest
  • It’s important to talk to you daycare provider and/or school because most casted kids can’t handle being out in weather over 80-85 degrees for much more than 20 mins or so at a time. Overheating and heat rash can be serious complications.
  • Want your child to experience the fun of running through a sprinkler like other kids? Well you still can. I’ve seen many parents share pictures and stories of using garbage bags and cutting holes in them for legs and feet to protect the cast while allowing them a little fun.
  • And of course lots of fluids, breaks and indoor crafts and activities so they are never bored.

 

At Home Cast Removal: 

  •  Once we learned about at-home cast removal our lives really did change for the better.  I wish we had learned about it sooner.  Here are some tips on how to go about doing this.
    –   First, watch a video.
    –   I think the best time to do it is in the morning when your child’s tummy isn’t full and is the ‘skinniest’.
    –   Lay your child down on their back by the TV or something to distract them with your hands and scissors any tape and moleskin   around the middle of the chest, bar, the belly bar and the tops of the shoulder straps if you have those.
    –   With the plaster or fiberglass top exposed slide your hand under the top chest bar between your child’s skin and the cast.
    –   Gently take small ‘snips’ to the cast.  Start with the belly bar.  It will take some force.  Be sure not to push down with the snips to apply pressure and in turn push on your child’s chest or tummy.  Do the chest bar next and then a shoulder strap.  By then your should be able to pull the cast part and your child should slip out.
    –   It sounds complicated but it’s really not.  Takes less than 5 mins.

 

Do you have any other tips on how manage day-to-day life in a cast?

 

Todo lo que necesitas saber acerca de la vida en un yeso y que tu Dr. no te dice

 Me tomó varios yesos antes de aprender los ins y outs de lo que realmente debes saber de la vida de los niños en un yeso Mehta o un yeso EDF para escolisis infantil.

¿Què llevar al hospital el día del yeso?

-2 juegos de ropa: suelta, elástica y confortable y una talla o 2 más grande. Evita los camisetas de una pieza. Camisetas y pants elásticos son lo ideal.

-manta, peluche o juguete favorito. También hemos encontrado útil llevar un juguete nuevo o algo que darle una vez que está en recuperación. Nuestra hija tiene un momento duro después de la anestesia y algunas veces un globo o un nuevo Elmo ha ayudado a distraer.

-DVD o una tablet son siempre útiles y buenas distracciones.

-jugo extra, leche y galletas así como otros bocadillos junto con su taza o mamila favorita son útiles para el regreso a casa. Cuando te permiten darle agua o un jugo en recuperación ellos prefieren su taza o botella.

-Baberos largos contra agua : el vomito no es algo extraño al salir de la anestesia y no querrás lidiar con vomito sobre un yeso nuevo.

-gotas para gases: muchos niños tienen dificultad para salir de anestesia. La anestesia causa gas en sus estomaguitos y les puede costar trabajo sacarlos. Las gotas infantiles para el gas con dimeticona ayuda a aliviar las molestias del gas. Asegúrate de consultar con tu doctor y enfermera antes de adminístralas. Este tip resulta muy útil.

Si tu hijo parece tener dificultades vomitando después de cada yeso, puedes pedirle a tu doctor o enfermera que le den Zofran para ayudar con las nauseas y vomito.

-lleva tylenol

-lleva un refrigerio y algo de tomar para tu pareja. Aunque probable te no tengas hambre mientras tu hijo esté en Quirófano debes tratar de comer algo. Puede ser un día muy largo y emocional.

-dependiendo de tu cirujano y donde vivas, el yeso de tu hijo estará hecho ya sea de puro yeso o con fibra de vidrio como cubierta. En algunos casos si la curva de tu hijo es baja podrán ponerle un yeso con material resistente al agua por algún periodo de tiempo -verano-. Sin embargo hay muchos pros y contras que deberás discutir con tu Doctor. Referente a los yesos típicos, estarán normalmente acolchonados en las orillas y cubiertos con “moleskin” y asegurado con cinta. Puedes conseguir duck tape con decoraciones de la marca Duck tape (la de Scotch no pega bien) o usar cinta coban. Incluso he visto casos donde usan tela o usan modgepodge para decorar el yeso. Pero todo esto son cosas que te gustará más hacer en casa.

-si tú hijo tiene una camiseta debajo del yeso y no está pegada o cortada, esta podrá cambiarse en algún momento y puedes pedir otra extra al hospital. Ser capaces de cambiarla y lavarla es muy bueno por muchas razones. Al menos es lo que hemos encontrado. Tampoco es tan difícil cambiarla como parece. Existe un vídeo que te explica cómo cambiarla. Si tu seguro o tu doctor no cubre playeras extras puedes encontrarlas a un precio muy razonable en línea

-esto es muy importante, asegúrate de que la enfermera o el Dr. examiné bien el yeso de tu hijo y que éste se haya sido cortado adecuadamente. Revísalo mientras lo cargas y lo sientas. Checa

Que no esté muy e largo u le roce la cadera o sus piernas mientas está sentado. También checa que la barra del pecho no este muy larga mientras se sienta y que no pegue con su barbilla . Verifica que no este muy alto en las axilas y que pueda colocar sus brazos abajo cómodamente.

Si no  tienes suerte de tener programado el yeso muy temprano y lo tienes a medio día o en la tarde. Muchos padres, incluyéndonos, hemos encontrado muy útil dejar que una noche antes tu hijo se duerma lo más tarde posible, darle algo de comer y beber. Ya que esto calmara su deseo de pedir comida o algo de no tomar, lo cual no puede. Hacer antes del yeso. Galletas y helado nocturno puede ayudar.

¿Qué esperar los primeros días con el primer yeso?

No voy a endulzar el proceso, el primer yeso es difícil para todos. Incluso después de leer esto y estar tan preparado como puedas, es muy difícil saber realmente como va ser.

No te sorprendas si tu hijo está alterado, incomodo, difícil de consolar, de mal humor o frustrado. Sí corres con suerte quizás tu hijo solo este un poco molesto y no lo demuestre mucho. Sin embargo, la reacción de tu hijo es normal y TEMPORAL. Los niños son muy resilientes. Yo continuamente me sorprendo.

Pueden tener problemas con el balance a causa de la anestesia pero también debes tomar en cuenta que su columna acaba de ser torcida y rotada a una forma mas derecha, así que tomara algo de tiempo para que tu hijo se ajuste a su nuevo balance. La anestesia puede causar que este un poco adormilado y fuera de balance horas después de aplicarla.

Algunos niños tiene más problemas que otros para caminar, gatear o hacer su vida normal pero no te preocupes esto pasara. El peso del yeso varia entre 2-4 libras. ¡esto es mucho peso extra para nuestros niños! Así que no te sorprendas si tu hijo desarrolla piernas muy Fuertes una vez que le quiten el primer yeso.

En algunos casos los niños debe de re-aprender o inventor algunas nuevas formas de maniobrar. Por ejemplo, levantar cosas del piso o inclinarse por un objeto puede ser difícil al inicio pero estos niños son tan resilientes que la mayoría encontrara la forma de hacerlo. Sé paciente y ayúdalos a guiarlos a encontrar nuevas formas de hacer las cosas. Sí en algún punto estas muy preocupado porque tu hijo esta teniendo muchas dificultades para hacer las cosas que normalmente hacía contacta a tu doctor o enfermera, que para eso están.

Dormir puede ser difícil las primeras noches. La primera noche en un yeso Nuevo, normalmente dejamos que Nora duerma con nosotros y así estamos más tranquilos. Nosotros también tenemos una almohada tamaño estándar para adulto de memoria en su cuna en la cual ella prefiere dormir. Muchos niños encuentran más cómodo dormir en una almohada más grande.

No te alarmes si tú hijo no come tanto como solía hacerlo en antes de traer el yeso. Estos yesos están diseñados para ser suaves y abrazarlos y eso da una sensación de sentirse satisfechos más rápido. Comidas pequeñas más frecuentes ayuda mucho.

No te preocupes demasiado, en algunos días tu hijo estará hacienda las cosas que hacia antes. Y te verás con una gran sonrisa en la boca cuando eso suceda.

 ¿Qué debes tener en casa y qué hacer para prepararse para vida en con un Yeso?

Moleskin: (protector de pies para zapatos) Vas a necesitar tenerlo por sí se zafa alguno o se ensucia. Puedes usarlo para las áreas donde esta más a apretado causando alguna irritación- Sirve para tener más protección y suavidad del yeso contra la piel. Puedes pedir más a tu cirujano o técnico de yeso cuando estás en el hospital.

Aquaphor: Nuestro cirujano nos recomendó usarla cada 2-3 días en la piel de nuestra hija bajo el yeso. Nosotros metemos los dedos como podemos y tratamos de poner una buena capa. Ayuda a tener la piel suave y evita tener erupciones.

Extra duch tape o coban

Si una erupción menor ocurre, puede poner extra moleskin en el área donde se está irritando. Puedes usar banditas de Mepilex (éstas son difíciles de encontrar en las farmacias pero las puedes conseguir en Amazon) y ponerlo directo en la irritación. Asegúrate de tener el resto de la piel bien lubricada con aquaphor para prevenir problemas de piel.

Baberos resistentes al agua de varios tamaños, los extra largos con mangas son muy buenos para que tu hijo pueda tener un tiempo de jugar con agua.

Pinzas de estilo de aviación de mayor fuerza posible y como complemento debes de ver el video donde te explican como remover un yeso con estas pinzas. Esto es en caso de alguna emergencia donde debas quitarlo. Es mejor estar preparado y saber que hacer en caso de una emergencia que entrar en pánico. Esto es algo que nos sugirió nuestro cirujano. Incluso, si escoges o te permiten remover el yeso de tu hijo necesitaras saber todo esto. Nosotros hemos encontrado muy bueno en muchos sentidos quitarlo nosotros mismos.

Hablando de emergencias, habla con tu doctor acerca de lo que necesitas saber en caso de algunas emergencias. Hay muchas opiniones y consejos acerca de cómo hacer CPR y atragantamiento o maniobra de Heimlich con niños con yeso.

Muchas familias han encontrado muy útiles las sillas tipo beanbag para darles confort a sus hijos.

Las sillas para infantes de carro pequeñas no funcionan para los niños con yeso. Ellos necesitan una silla más grande y cómoda para evitar que el yeso los roce. La silla BritaxxRoundabout ha sido recomendada por muchos padres. Incluso he escuchado que en algunos hospitales les prestan sillas especialmente recomendadas y probadas para niños con yeso.

En el caso que tu  hijo se haya introducido algo a su yeso como piedritas, comida, juguetes y no puedes alcanzarlo con tus dedos, la mejor manera de removerlo es primero quitar la camiseta y ver si eso ayuda. Sí eso no ayuda, puedes utilizar unas pantimedias de manera vertical como si estuvieras usando hilo dental por todo el yeso. Eso deberá sacar lo que fuera se hubiera quedado ahí. Este método de asemejar el hilo dental con la pantimedia puede ser muy útil para calmar la comezón. Sí es tierra o arena lo que tiene adentro también puedes usar una secadora de pelo con aire frio.

Pañales

Cada niño es diferente y cada yeso puede ser diferente a otro y esto afectara la manera en que uses el pañal. Lo que me funcione a mí puede que no funcione para otros. El tema del pañal es algo más de “prueba y error”  pero aquí hay algunos tips que han experimentado algunas mamas.

HuggiesOvernights-sólo para la hora de dormir. Estos pañales absorben mucho agua y ayudan a no preocuparse por fugas nocturnas.

Incluso los pañales normales del día puede ser un problema que se queden en su lugar. Quizás puedas intentar tener una talla más chica para tener un mejor ajuste. O quizás te podrá ayudar doblar la parte de arriba y meterlo debajo del yeso.

Sí sigues teniendo problemas de fugas experimenta con varios pañales. Muchas mamás han encontrado mejor el uso de pull ups que los pañales regulares, incluso hay algunas que dicen que los pañales de tela funcionan mejor. Algunas usan un calzador de zapato para tener mejor ajuste del pañal debajo del yeso.

Almohadillas  para absorber humedad o toallas femeninas pueden agregarse a los pañales para tener una mejor protección e incluso son buena idea para usarlos como una protección extra si tienen diarrea o algún otro problema intestinal

Sí tu hijo tiene alguna fuga en el pañal o se moja el yeso trata de secarlo lo mas posible con una toalla o con la secadora con temperatura fría. Si tienen una playera removible quítala y lávala. Si no se puede quitar jala la playera lo más que puedas, lávala y sécala con la secadora de pelo.

Baños de esponja:

Los baños de esponja pueden ser un reto, especialmente para mi hija que incluso después de 5 yesos odia los baños de esponja y nosotros también. Hemos tratado múltiples maneras de hacerlo. Fuimos afortunados de que no tuvo mucho cabello los 4 primeros yesos así que no teníamos la necesidad de lavarlo cada baño de esponja. En ese momento, nosotros poníamos 2 juegos de toallas frente a la TC (o frente a la chimenea en invierno) poníamos 2 contenedores de agua grandes, uno para agua con jabón y otro para enjuagar. La acostábamos en las toallas y la limpiábamos en las áreas de piel expuesto lo más rápido posible. Ahora ponemos unas toallas en la cocina junto a lava trastes  y hacemos que incline la cabeza para lavar su cabello. Muchas mamás han encontrado muy útiles los shampoos en seco y toallas de limpiezas.

Incluso hay una mamá que han encontrado la marca de Norwex muy útil incluyendo la microfibra súper absorbente que recoge agua, mugre, bacterias etc sin necesidad de enjuagar, puedes contactarla a ella en wagoner518@gmail.com.

Sí tu hijo tiene el ombligo cubierto no será raro que desarrolle algún tipo de humedad o levadura. No te preocupes no es dañino y tiene un olor raro, dulce. Sí puedes y tiene camiseta trata de levantarla y limpia su ombligo con agua y jabón una o dos veces al día. Los q-tips sirven de maravilla y sí esta rojo o irritado un poco de aquaphordebe de ayudar,

Tips para amamantar a tu hijo con yeso

Sí, aun puedes amamantar a tu hijo. Muchas mamás han encontrado que el yeso las roza para esto han sugerido ponerle cinta al yeso. Dependiendo del hospital donde le pongan el yeso, algunos te pedirán esperar antes de que le pongas cinta, así que mientras tanto podrás una playera de lactancia. Asegúrate de preguntar a tu cirujano acerca de amamantarlo antes de cada yeso (por el ayuno de fluidos que debe de existir). La leche materna es considerada un fluido claro y tiene restricciones diferentes que la leche de vaca. Asegúrate de ir con alguien el día de yeso que te ayude a distraer a tu hijo cuando esté desesperado por lactar y no entienda porque mamá o lo puede hacer. Te van a permitir amamantarlo una vez que salga del yeso.

Cómo manejar un yeso en el verano

 Sobrecalentamiento y erupciones de calor pueden ser muy serios en un niño con yeso. Considera invertir en un chaleco refrescante  (http://www.noeledfcastframe.com/2012-09-27-16-54-53/accessories) – el cual podrá ajustarse y ser usando durante todo el proceso del yeso. Duran aproximadamente 2 horas y después necesitan volverse a congelar. El chaleco es seguro y fácil e usar. El peso es menor a 1 libra.

Bandas refrescantes

Es muy importante que hables con el cuidador de tu hijo o a la escuela ya que los niños en yeso no pueden estar en temperaturas superiores a 80-85 F por más de 20 minutos. Sobrecalentamiento y erupciones de calor pueden ser muy graves.  Un ventilador de baterías portátil puede ponerse en la carriola y puede ayudar mucho. Si quieres que tu hijo siga disfrutando de las fuentes que salpican agua puedes hacerlo poniendo algún protector como una bolsa de basura con hoyos que lo proteja del agua. Una cama de agua al aire libre puede ser una gran diversión también. Por supuesto no olvides darles muchos líquidos , las actividades dentro de caso pueden ser muy divertidas también.

Quitar un yeso en casa

Una vez que aprendimos como quitar un yeso en casa fue algo muy bueno para nuestras vidas. Desearía haberlo aprendido antes. Aquí algunos tips:

-Ver el video

-Creo que la mejor hora de hacerlo es en la mañana cuando el estomago de tu hijo no esta lleno y esta desinflamado.

-Acuesta a tu hijo de espaldas viendo la TV o algo que lo distraiga con tus manos y tijeras quita todo la cinta y moleskin que tenga.

-ya con el yeso expuesto o la fibra de vidrio desliza tu mano debajo de la barra del pecho para que quede entre la piel y el yeso.

-Suavemente ve cortando el yeso, empieza con la barra que está debajo del ombligo. Se necesitara fuerza. Asegúrate de no presionar mucho sobre el yeso o el estomago. Una vez que cortes ese sigue con el del pecho y luego con los tirantes de los hombros. Para entonces podrás abrir el yeso y quitarlo fácilmente.

-Puede sonar complicado pero realmente no lo es, no tardas más de 5 mins.

Traduccióntextualpor: Paola Ortega Hernández Santarriaga.

 

“A Special Little Place In Heaven Just For The Person Who Developed Valium & Versed”

I’ve said this many times…..There’s a lot I have learned I wish I had known earlier; the role of pharmaceuticals drugs being one of them. As I’ve written about before, by our 3rd cast Nora was really having a tough time with the entire casting process. She knew as soon as we got to the surgical wing of the hospital what was about to happen and she was scared and terrified and when it came time to have a cast trimmed or removed we went through an even more terrifying process. I’ve also written about the amazing help we found through a child psychologist and play therapy but I haven’t talked yet about drugs we have used that fall into the sedative category.

There is a big taboo around even the justified use of drugs like Valium and Xaxax, probably because they are also drugs that are abused often and have addictive qualities if not taken properly. Then you throw in the idea of prescribing these drugs to children, toddlers even… and people are often quick to judge and question and let fear take over . Heck even I did. When the idea of prescribing Nora a dose of Valium before any cast trimming or removal was brought up, I was initially frightened. Scared I could accidentally over dose her or she could have some crazy side effect, like stopping her breathing. But we were desperate, desperate to take that terrifying fear away from her. So we decided to try it.  It was incredible. It worked amazingly. It did just as her child psychologist said it would. It made her relaxed and just as though she didn’t care much. She still got a little nervous and cried for a brief second or two, but that was it. Since then we’ve learned to take her casts off ourselves so we bypass this entirely now for removal, but cast trimmings are always something we might face with each cast. I’m relieved to know we have this in the back of our medicine cabinet if needed.

Then there’s the drug called Versed. This little number was recommended to us at our third casting when Nora was terrified, crying and hiding in the play room on the surgical floor before her casting. This drug is a bit complicated though. It’s a drug administered only in the hospital before surgeries to relax a child and it also produces amnesia, so when they wake up they won’t remember what all went down beforehand. The downfall is some kids do not react well to this drug when they come out of anesthesia and are erratic. So it was a gamble. Nora was already one of the lucky kids who has an even tougher time than most coming out of anesthesia so the idea of giving her something that might make that part even worse didn’t sound like a gamble we wanted to take. So we sucked it up and dealt with a scared child beforehand who screamed and screamed while we held the mask to her face that made her go to sleep in the OR. It was very hard for Matt and I emotionally but we just did it. You do what you have to do.

It was at our fifth casting when our anesthesiologist recommended it again. This doctor was a straight shooter, former army doctor and very easy going, he told us he thought the chance of her reacting poorly on the other side was low and since we’ve been to this horse and pony show before we know what we are doing and how to handle a rough spell anyway. So we decided to try it.  This was a choice I wish I had made two casts before. I can’t explain how it felt to take my little 21 pounder to the OR and put that mask on her face and she was cool, calm and didn’t have a care in the world. As she laid there sleeping on the surgical table, I let out a huge sigh of relief. It was then the anesthesiologist said “there’s a special little place in heaven just for the person who developed Versed.” I couldn’t agree more.

IMG_5380

So if you are going down this road of casting, surgeries, and difficult procedures and your child is having a tough time and you are too…please ask your doctors about your options. They can make a big difference.

Summer Break – No Casts! YIPPEE

It’s been a great summer so far. We were very excited Nora’s five casts so far have done their job and have allowed her to have a two month break from casting this summer. It couldn’t have come at a better time, this almost two year old (in just two days!) is as curious as curious can be and into exploring everything; which with summer and outdoor fun means lots of dirty grimy things kids should be getting into!
We  have also learned we how to remove her cast ourselves! This is simply tremendous for us for a number of reasons. Mainly being, Nora is terrified of the hospital and cast removing saw. We can take it off in a matter of minutes now. It takes some serious strength and the right tools but it can be done!

See here how we do it!  https://www.youtube.com/watch?v=MoigLgFPwvs&feature=youtu.be

After we removed her last cast, we left the very next day for the beach in the Carolinas for a week to visit family. It was a great time and I can’t begin to tell you how fortunate I felt to be able to take her to the sandy beach. I often think of the little kids who don’t get cast breaks and especially those who live in the south or beach towns. My heart breaks for those families. It can be a rough a long road that families who aren’t dealing with it themselves often just can’t understand or relate to.

IMG_5956 IMG_5905 IMG_5926 IMG_5960

We are now getting ready to celebrate my brave, smart, sassy and determined little girls second birthday. I can’t believe how fast the time has gone. And the next several weeks will be filled with water, sand, dirt, rocks, messy crafts, and all the things that are no-no’s during cast time.
I’ll be posting soon more details about our trip to visit a team of specialists in San Diego and our experience there. Stay tuned and have a great summer all!

The Child Psychologist, Play Therapy & A Doll Named Scully

Through this blog I’ve had several parents reach out to me specifically about the psychological and emotional toll all of this might have on their little ones who are about to face some of the same things Nora has faced. So clearly now is a good time to share our experiences on this.

By time we got through cast number three, things had changed. In many ways, things had actually become harder, even as we hoped the opposite would be true. When we arrived at the hospital for that third cast, Nora almost immediately started crying and panicking when we were taken back into our pre-op room. Simply put: She remembered. This hadn’t happened before. She was upset and fearful of anyone in blue scrubs or a white coat. We spent as little time as possible in our room and spent as much time as we could in the playroom. Even in that “safe” environment, Nora would hide in the playhouse when she saw any staff come in to talk to us. It was an added stress for all of us that we weren’t expecting. Our nurses told us it was normal, that she was getting to an age where she can remember. We discussed some ‘pre-med’ options for our next cast that we would give her as soon as we got to the hospital to help her relax and, as they said, would make her forget the entire experience afterwards. It sounded like a great idea. However the drawback is some kids come out the other side of anesthesia more or less freaked out and have a tough time coming out of surgery. This doesn’t happen to all kids but some. So it was a gamble and Nora is already a kid who struggles more than most coming out of anesthesia. Things to think about…

We got through that third casting and made it home, but it was becoming obvious to me — after playing back in my head the responses to all the previous casts — that Nora was just not herself for about a week after each cast. She seemed as though she wasn’t trusting of people, very shy and nervous and as though she was just angrier at times, which was not generally like her at all. Now of course this is also very common in 18 month olds who aren’t going through anything. But how were we to know what was normal and what was a reaction to everything she had been through? We don’t have other kids to compare to.

cast 3I decided to trust my gut and reach out to a child psychologist at Children’s Hospital who works in the rehab medicine department. She specializes in kids who deal with things like long term medical issues, lots of hospital stays and long term recovery. I met with her without Nora the first time. She was wonderful. She explained a lot of basic child psychology things and how a toddlers mind works, etc. She explained that Nora’s reaction was very normal, but that didn’t mean we shouldn’t try to find ways to have her more prepared and help her through it all. She gave this example: Imagine continually waking up next to a fence and on the other side of that fence was a giant, snarling wooly mammoth wanting to eat you. Of course you would be terrified and would scream. That’s a normal reaction. But we can give you tools to help you deal with that encounter better –how to acknowledge there is a fence there to protect you, how you have the ability to move, etc.

So that’s what we did. We got tools. Her first suggestion was to get a play doctor’s kit –preferably with a saw, since a huge part of Nora’s fear was around cast trimming and removal — a larger soft cloth doll, and one of Nora’s old casts.

IMG_5406

We put the cast on Nora’s new doll who we named Scully. Scully, just like Nora, has scoliosis too. We talked to Nora and Scully about getting a new cast and also getting it off. We would tell Scully it was ok to be afraid and that it was a scary process but she’d be ok. We practiced examining her with all the doctors kit stuff, and we used the toy Bosch circular saw — the only loud saw toy I could find –and we practiced taking it on and off. And we celebrated with milkshakes, just like we do with Nora.

scully
At first Nora would say, “No, no!” She clearly didn’t want anything to do with it. It was clear it was a fear of hers. But soon she came around and was eager to ‘go get Scully’ so we could take her cast off and we could play. I really didn’t think any of this would work nor have any effect on an 18 month old. But once again, I was amazed. These kids understand far more than we give them credit for. We continue this play routine often, and it really has helped. Nora is now happy to show you her cast and Scully’s.

playing with scully
When Nora met with the child psychologist again, we did more play therapy with Scully and other toys she had in her office. We also practiced taking Nora back and forth to actual exam rooms and pre-op rooms –other places Nora has a big fear of. Nora was adamant she didn’t want to be in there. She cried and clung to me as best as she could. The doctor practiced examining Scully or putting a cast on or taking it off. After about four or five times of going back into these rooms, Nora relaxed and even became helpful with Scully. It was working! By time we were done, Nora was handling it all so much better.

The psychologist also practiced examining Nora’s cast and tapping on it up and down, shaking it a bit. Trying to somewhat mimic what it would be like when the casting saw would be out. Nora tolerated it but it was clear she didn’t like it at first. I realized at that point that I’ve never patted on her cast, like I would her back. I had always found a way to actually rub or tap her skin for comfort; I’d focus on her head or arms and legs. I always ignored the cast as much as I could. It was then I realized, I too, should tap her cast for comfort, and not to ignore it like we had been doing.

After our sessions with the psychologist and the continued play therapy, we really did notice a difference. It really helped. We got some children’s books too about getting casts, going to the doctor or hospital, etc. These books are some of Nora’s favorites now. She loves to point to the characters’ casts and hers while reading them.  We are still working on a few things, Nora still has a tough time with going to sleep at night for about a week after each cast, but I’m hoping with continued work and learning from others we will begin to find ways to help with this as well.

reading with scullyAny parent concerned about how their child is reacting to their casts, braces, surgeries, etc. –or if they are worried about how that first cast will go and would like some tools to try and help — I hope our experiences will give some ideas.

Here’s a list of key things to get:
Toy doctors kit
Toy saw – the best one I could find that makes a loud noise is this one
• A soft cloth doll or stuffed animal:

  • Use an old cast to put on the doll
  •  Put an ace bandage and duck tape around the doll or stuffed animal
  • You can even have a custom ordered toy with a replicated metha cast. You can order those from Mehta Casted Dolls FanCASTic Friends

• Books:

 

 

Here we go! Bring on cast number 5

Like all the castings so far, I’ve dreaded this one just as much. I’m hoping that one of these times the big lump in my throat and the watery eyes will lessen.

As we sit here and wait in her pre-op room Nora is relaxed and enjoying watching her Elmo videos. She has been great so far with all the doctors and nurses who have come in to see her. This in itself is a relief and I’m so grateful.

Just a little while longer till we get started. Lots is prayers and squishy snuggles to cram in.

Stay tuned!

Day-to-Day Life in Plaster

We are currently on our fourth cast and boy have we learned a lot by now. Much of it I wish we had known sooner, but isn’t that often how life goes?

Nora adjusted pretty quickly to her first cast. It really wasn’t holding her back from doing anything. In fact, she was developing some serious baby muscles. When we would remove her knit-rite shirt, that’s worn underneath her cast, and she would flex and pull herself almost into a crunch and you could see a six pack muscle outline. I kid you not. Carrying around that extra 2 to 2 1/2 pounds on such a little body is making our baby buff!

Speaking of the shirts, changing these little suckers is not fun nor is it easy but we feel it’s a must with a busy toddler who’s into everything. There was one changing episode where I didn’t think I was going to be able to get a new shirt on. The cast was so tight and it was so hard to dig and squeeze my fingers in between to try and pull it down and into place. After about 20 minutes and a few breaks I finally got it.

We’ve figured out a sponge bath routine that to this day, eight months later, is still a dreaded task. She simply hates just about every aspect of the sponge bath and hair washing. No matter what distractions we have or how many pieces of bribing candy we have on hand, it doesn’t matter she hates the whole thing and screams and cries. She just wants in a big full bathtub. But even though she hates it and fights it, she has, in a way, come to terms with it. As soon as we are done she, all on her own, happily applauds herself and smiles and typically does her happy dance.

Having the cast trimmed or removed is an absolute nightmare. Unfortunately, after four casts we’ve had to have 3 trimmed for various reasons. Being too high under her arms, too low on the hips so she can’t move about normally. The sound of the machine and the way it shakes her entire little body while it’s doing its job is simply terrifying for her. The techs felt so bad one time they went to the hospital gift shop and brought her back a couple of stuffed animals to keep.

We’ve taken her to a closer branch of Children’s hospital just for trimming and removal and it got to the point where she was crying and pleading as soon as we walked into the hospital – she just remembered. Holding your child while they try and cut and tear away at the casting material while she’s crying… No, not crying – screaming, screaming sheer terrified help me screams is just awful. I’ve broke down crying right along with her.

But once she’s settled down after having her casts removed, every time she points to her belly and pats her ribs and has a look of wonder, joy and confusion in her eyes. These casts have become a real part of her and suddenly they aren’t there anymore. It’s almost awe inspiring to witness. With each removal we’ve spent a few minutes afterwards just taking it all in…And that includes endless hugs.

The cast removal appointment is a roller coaster of emotions. I can’t tell you how amazing and incredible it feels to be able to wrap your arms around your baby…Around her body, touch her skin, feel her body expand and contract with each breathe after two months of wrapping your arms around a hard plaster cast. It’s like Christmas morning to me. I can picture it and I can feel it right now as I write this…I long for it and I miss it so incredibly much. It’s one thing I often find myself jealous of. I see parents pick up their little ones and give them a quick hug like or a big huge snuggle. They don’t think twice about it usually, why would they? But I do.

So after a long hug and squeezing session in the doctor’s office our routine is to go get milkshakes on the way home as a reward. In fact, it’s become our routine for just about any doctor visit now. And once we get home its bath time. The excitement on her face when she’s in the tub and realizing she can actually splash and play is infectious. It’s impossible not to grin ear-to-ear.

These breaks from her casts are filled with more baths than you can imagine, almost daily trips to the pool, ooey gooey messy crafts projects, more hugs and snuggles. I’m beyond grateful for these breaks where we have a few days to live life like normal.

milkshake  crafts  pool

 

Trading Worry for Peace – Present Day: April 3, 2014

The Dalai Lama once said, “If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it’s not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever.” Such a simple and yet profound explanation of worry. I know this. I believe this. I’ve tried to live much of my life knowing worrying is useless and won’t get me anywhere. Lately, I’ve found myself reading this quote, and a few others about worry, over and over and yet I’m struggling, really struggling to push worry aside.

After first getting Nora’s diagnoses over a year ago, I did a great job of pushing worry aside and focusing on what was right in front of me and what I could control. But in the last month or so, since her case has changed, I can’t seem to push worry aside. Not even a little bit. My days and nights are constantly filled with worry, fear, wonder and doubts and so many unanswered questions…questions that simply do not have answers. Constantly.

We meet with Nora’s surgeon yesterday again to talk more in-depth about our options. I was truly hoping that we would leave that appointment and things would suddenly become clearer, that there would be an obvious path to take. But there wasn’t. Her doctor said it best, “When you have several surgery options it’s because none of them are really that great. There is no perfect solution.” It’s a freakin’ complex matrix. It’s not a simple pro’s and con’s to each surgery, there are too many factors that play into it. But the worst part of it all, is there are so many unknowns, questions that don’t have answers. Eventually, hopefully a year or two from now, we will have to pick something. How do you pick a surgery when you don’t have all the answers? When they all have risks I simply don’t want to think about.

I’ve spent hours and hours digging and finding all sorts of research and studies. I keep searching as if I think I’m going to find the perfect solution out there. In my subconscious I think I’m going to somehow discover something none of the experts have ever thought of.  As if I’m now some orthopedic spine genius sent down from God himself. Yes, it’s crazy. I know that. But what it’s really called is denial. DENIAL. I know I’m in denial… still. I can rationally understand that but I’m not ready to move on to full acceptance.

None of us know what the future holds for ourselves or our children but we all imagine it and have a basic story line in our heads. Worry has driven me to think of what my daughter’s real future will be like. What will her life be like as a teen and into adulthood living with this? A big percentage of spinal surgeries using rods, screws and fusions have complications 15 -20 years down the road. At least that’s what studies show from those who had those surgeries 20-30 years ago. Some of the complications are, all things considered, minor but many are not. I’m inundated with stories I read daily of adults who are suffering now. We are talking on living on disability, continually use of pain medications, a limited lifestyle, etc. The surgery options we have now do not have any long term studies because they just haven’t been doing them long enough. But that’s what I worry about so much these days. The unknowns. Things out of my control anyway.  I worry for her future in a way I never thought I’d worry. I worry we will choose the wrong surgery. I worry later in life she will live in pain. I worry about her psyche, her self esteem, not being able to do all that she wants to do. I can’t push those worries aside no matter how hard I try these days.

And so I will close with another quote that spurred this blog entry

“Never worry alone. When anxiety grabs the mind, it is self-perpetuating. Worrisome thoughts reproduce faster than rabbits, so one of the most powerful ways to stop the spiral of worry is simply to disclose your worry to a friend… The simple act of reassurance from another human being becomes a tool of the Spirit to cast out fear — because peace and fear are both contagious.”