On this blog I try very hard to be positive – especially when it comes to Daisy. I am keenly aware of how lucky we are to have her at all and I realize fully how fortunate we are that her ailments aren’t worse. She doesn’t have leukemia or a life-threatening condition. She hasn’t lost her legs permanently. We will eventually get through this period in our lives. But, with all of that said, I wouldn’t be authentic if I didn’t express that this has been really, really, really hard for our family. I caught myself telling someone last week that “it gets easier every day!” before realizing I’ve just been saying that to ease other people. I don’t want people to feel badly for us or to make them uncomfortable but the truth is this isn’t getting easier at all. If anything, it might be getting harder.
Given that the goal of this blog has always been to share our journey as a family in the most honest and helpful way possible, I’ve decided to share the nitty gritty of our day-to-day right now. For the parents scouring the internet looking for a hint of what’s to come for their own spica-bound toddler, hopefully this may help.
Daisy is typically a really sweet, good-natured, polite and loving child. She is strong-willed but was never, ever bratty, explosive or violent. However, being in the hip spica cast has completely changed her personality. She goes from 0 to 60 in about two seconds – happy one minute then screaming bloody murder and crying hysterically to the point that she can’t breathe: over things like suddenly discovering she isn’t wearing socks or the DVR taking more than one second to load Moana. It seems that about half the time she is close to us, she is striking or slapping us or pulling our hair. She is so frustrated by her circumstances and cannot comprehend why she is in the cast or why we won’t take her out of it. She cries a hundred times a day that she is “stuck” and begs us to let her walk with tears in her eyes and it breaks my heart every single time. She points to areas in her playspace like her kitchen and our attempts to explain why these things aren't possible do not help because she can't understand. Her behavior is taking a toll on us as her parents in that we desperately miss the real Daisy who we know is underneath these layers of anger and frustration. We completely understand why she is acting out the way she is and we feel so helpless and defeated.
Nick and I have always been big believers in loving but firm boundaries and rules. We don’t want to raise children who are spoiled and we have always insisted that Daisy earn the things she wants and have always enforced time outs for bad behavior. In this situation, it is so hard to stick to our typical rules. She has become bossy, demanding and easily outraged when she isn’t instantly granted what she wants, but, it’s so difficult to discipline her when we know we’d be miserable in her shoes. “Time outs” involve carrying her up the stairs to her room and the cast is incredibly heavy, especially for this pregnant mama, so those end up being a punishment more for me (or whomever is caring for her) than anything else. We fear reinforcing negative behavior by turning a blind eye or giving very light discipline – will our approach to discipline in these weeks and months have a lasting impression on Daisy? If we go easy on her, are we sending the message that bad behavior is acceptable and letting her turn into a bad kid? Conversely, if we take a hard line will she remember us as cold and unloving during this dark period in her life? No matter what approach we take, it never feels quite right and I often want to just curl up and cry because I know she is hurting and I am hurting too. We welcome any ideas from fellow parents, teachers, people in the medical field - we are so lost here!
I have never dreaded meals more in my life than I do right now. Daisy insists on feeding herself – her hands are her only mobile part right now and she wants to use them fully – but her cast keeps her in a reclined position so 80% of her food ends up on her clothes or in the surrounding area. She gets extremely frustrated when her attempts to deliver food into her mouth are unsuccessful and she’ll throw her utensils and often bowls full of food across the room in a fit of rage. Other times, she protests eating altogether. To make matters even worse, she often has no appetite at all and there’s nothing we can do to get her to eat.
Daisy has become completely resistant to medication of any kind. While most of the intense pain following her procedure has diminished, it is recommended that a light dose of medication be administered to keep the patient from discomfort related to atrophying muscles and/or spasms. Daisy will not accept any medication via syringe, spoon, mixed into apple sauce, blended with juice or mashed with a popsicle. We’ve tried administering by syringe and blowing on her face so she’s forced to swallow – she caught onto that too. She can smell medicine from a mile away and will do everything in her power to keep it from entering her system including gagging, spitting, choking and physically fighting us away from her. I love so much that she is independent and already insists on making decisions about her body, but, I wish so desperately that she could understand we are just trying to make life easier for her.
Daisy was always an incredible sleeper. Now, it’s like we have a newborn (and our actual newborn isn’t even here yet!). We are awakened every few hours (sometimes every hour) by the sounds of her screaming for us and crying hysterically. Understandably, she tries to shift positions in the night and when she is unable to do so, frustration sets in. She is normally a stomach sleeper so we’ve started placing her on her chest at night but in the last week, she has figured out how to push up on her hands, shimmy down to the end of her bed and rotate her body out of bed and onto the floor where she then drags herself across the carpet towards the door. She is only truly content at night when she is sleeping in our bed, propped up on a large Euro sham in between us. This of course means a restless night for Nick and I.
She has also been experiencing night sweats. When we retrieve her from her room in the morning, her pillow and sheets are often soaked. Even with an air conditioning unit in her window, she seems to struggle through the night to regulate her body temperature.
Maintaining our usual bedtime routine has helped a bit. We read the same books before bed as a family and Nick and I sing the same two songs that we've always sung to her. She asks for "one more birds" (Blackbird by the Beatles) almost every night and we usually end up singing a few extra renditions because it seems to help her relax.
We did find in the beginning that Daisy’s excitement around having a new “big girl bed” helped facilitate a smooth initial transition. She was so thrilled to get into her bed and be tucked in with all of her stuffed animals, she didn’t seem to initially mind the cast. We’ve tried to keep things are comfortable as possible with an air conditioner, a sound machine and super comfy support pillows and soft blankets which help a little.
We work so hard every day to avoid television and movies but they are the only thing that hold Daisy’s attention and keep her calm for long stretches of time. We have been spoiled rotten by our village who send what feels like five packages a day (!) so we have hundreds of activities to choose from, but, Daisy will only remain occupied for so long because she is ultimately just being distracted from what she really wants to do which is walk, jump, run and play independently. We try our best to strike a balance between puzzles, arts and crafts, playing with dolls/figurines, sorting, stacking and resting with movies or TV. From the moment she opens her eyes in the morning, she begs for Bubble Guppies, Doc McStuffins or Moana. When we tuck her in at night, she is begging for Bubble Guppies, Doc McStuffins or Moana. TV is all she wants and all she thinks about – and that in and of itself is making us feel like failures in the screen time department.
Daisy does not fit in any kind of stroller so the only way to bring her outdoors is to prop her up with pillows and rolled towels in a wagon and pull her around. Because of the position of her cast, she is forced into a reclined posture which makes it hard for her to see much other than the sky and usually the sun is in her eyes which angers her almost as much as her inability to get out of the wagon. Nonetheless, we are determined to get her outside at least once a day for a walk around town and once in the evening. We make a point of grilling a few times a week so we can sit outside at twilight and be together while we prepare food. She tolerates this for a little while with the help of bubbles and an occasional iPad movie. She also loves being carried over to look at the “fishies!” in our koi pond and smelling all the beautiful flowers growing in our garden.
One of the things I have learned is paramount for keeping Daisy happy is providing closeness and affection whenever possible. One of the most difficult adjustments for a child in a spica cast is the sudden forced distance from others. Daisy and I have always been so physically affectionate and I noticed in the first week or two that we spent much less time touching because she doesn’t fit in my lap and we can’t really sit side-by-side. Lately I have been doing my best to arrange myself around her so that we are holding hands, our arms are touching and our heads are close together whenever possible. When I am changing her diaper we talk a lot face-to-face and give lots of hugs and kisses. The physical closeness seems to help connect us and make Daisy feel some sense of calm. It isn’t always easy or comfortable but it’s so necessary and worth it!
Changing diapers for a toddler in a spica cast is challenging on a number of levels. First, the child is simply heavier because of the cast. Second, they are less mobile so you can’t change a diaper just any old place, you really need a stable platform like a changing table. Most families only have one changing table and if you’re like us, it’s on the second floor so every diaper change involves a trek up the stairs carrying a heavy child. Once you’re ready to actually change the diaper, you first remove the outside diaper then carefully un-tuck the smaller diaper from the opening in the cast and must carefully clean in and around without getting the cast wet or spreading any bacteria to places it shouldn’t be. After everything is cleaned, we then flip Daisy over onto her stomach to tuck the small diaper into the back opening and loosely fit the larger diaper on the outside. Then we flip her back over to address the front. We've found this is the best way to ensure complete coverage and avoid the cast getting too messy - but it is physically taxing to lift and flip her. Daisy absolutely hates this entire process and will usually scream and cry through the entire diapering session.
Poopy diapers are a nightmare but we're surviving them. Keeping the cast area clean is simply challenging when it is exposed to fecal matter on a daily basis. This cleaning solution was recommended by an old coworker (who is one of those moms who always knows the exact right product for every need!) and it’s a great way to sterilize the cast and surrounding area, remove smells and keep your kiddo safe from toxins.
Keeping Daisy Clean
Given that Daisy's cast cannot be wet, bathing is out of the question for the next 7 weeks. To keep Daisy's hair clean, it takes one person to hold her over the kitchen sink and another to use cups of water to wet her hair then shampoo/condition and rinse. Daisy's hair easily gets snarly now because she reclined most of the day with her hair rubbing against fabric. Detangling and combing is a painful process for everyone with lots of yelling and hitting.
Spica casts are typically made from fiberglass which must be kept as clean and dry as possible to prevent skin problems and breakdown. Keeping the cast dry is a challenge – particularly on hot days when you’re trying to keep your fussy toddler cool with misting spray or cold compresses. We’ve found that keeping a thin towel over the cast during feedings and any time we’re trying to cool Daisy down helps.
The cast is lined with Goretex Pantaloon liner which helps the cast and padding from becoming soiled or mildewed from moisture. The Pantaloon liner can be tough on skin so the edges of the cast are prepared by “petaling” which is the process of affixing soft adhesive tape called moleskin. For parents with kids experiencing pain around the cast edges, instructions on how to “petal” spica casts can be found here.
When you decide to have children, you (hopefully) plan for changes in your budget. You know you’ll need to buy things like diapers, wipes, clothes, formula and eventually baby food. You may have to pay for childcare and insurance and any gear you’re not gifted by friends and family etc. What no one prepares you for is the possibility that you might have a sick child. In Daisy’s case, there was the eight weeks in the NICU, then the six months that followed where we needed to purchase medical supplies, equipment, special formula, syringes, tubes, IV poles, medical tape, gauze, sterilization materials.
Now, it’s giant boxes of diapers in new sizes (size 2 to go inside the hole in the cast and size 6 to go outside the cast to capture any leakage). Then there’s the nanny we needed to hire since Daisy can’t attend the private school we pay for given that she can’t walk and needs significant attention throughout the day. There are special chairs needed for kids in spica casts – one for activities that costs upwards of $250 and a bean bag chair for comfort which can be $100. There is the wagon you need to get your child outside since they won’t fit in a normal stroller ($100). There is the Hippa car seat ($500) that you need to transport your child safely from Point A to Point B. There is the bed you need to buy since it’s impossible to arrange a spica cast-bound child comfortably in a crib ($100). Then there are the “little” costs that add up quickly – the special haircare products you’ll need since your child’s head is rubbing against fabric most of the day and you can’t wash their hair in the tub (detangling spray and conditioner, dry shampoo, special combs) and the $3.99 you spend every other day to rent the Disney or Pixar flick your child is begging for. The list goes on. And on. And on.
For parents preparing for this experience, plan to put aside a thousand dollars if you can. Between supplies, medication, gear and entertainment, you’ll need every cent. If you work far enough in advance, you may be able to secure a Hippa car seat from your hospital and a used spica chair from another family on Craigslist or Facebook. We had no such luck with the latter but many families do have success and it’s worth trying.
The Importance of a Village, AKA “Our Tribe”
There is absolutely no way we would be able to survive this period without the love and support of our families and the generosity and creativity of our friends. There was a four-week gap between Daisy’s surgery and when our new nanny could start and our mothers helped provide childcare for that entire four weeks so Nick and I could work and Daisy was well taken care of. Without that help, we would have been completely lost and possibly jobless. My mom put her design business on hold, changed travel plans and rearranged her life to join us in April and again this week to care for Daisy from morning to night. My mother-in-law packed two weeks of groceries and clothes into her car and moved in for the middle fourteen days to care for Daisy (despite upcoming shoulder surgery and her own joint problems) and prepared three meals a day for two whole weeks.
Every afternoon when we open our front door to check the mail, our front porch is stacked with boxes, packages, letters and cards. The love and support from readers of this blog and friends from all walks of life has amazed and overwhelmed us. You have sent the BEST toys, books, activities, arts and crafts packages and even gifts for me and Nick and our moms. You have texted and DM-ed and emailed and called daily to check in and see how we are doing, to offer prayers, words of support, jokes and silly stories to raise our spirits. I cannot thank you all enough for everything you’ve done to help us fill Daisy’s time and to keep us feeling positive. Without these waves of love and support, we would be drowning.
What the Future Holds
Daisy is scheduled to have the pin in her femur removed tomorrow. They will saw off the cast she is currently in, remove the pin, conduct an MRI then re-cast her for another five weeks which will be followed by two weeks in a brace. My research tells me she could walk within a few days of the cast removal or it could take up to six weeks for her to take independent steps. If the MRI results have shown a successful intervention (which would mean that enough of a hip socket developed during the time she had the metal pin for the femur and socket to be joined), we will repeat all of this on her right hip in the fall.
It’s a long road ahead and this is going to be a challenging several months for our family, particularly as we introduce a new baby into the mix. With a little luck, a lot of creativity and all the love and support from all of you, we’ll come out the other side, stronger and more grateful than ever ♥