When It’s Your Child, Every Surgery Is “Special”

This is Gabrielle. She has juvenile arthritis and was treated at the Hospital for Specialty Surgery. More about her below.

Because my job involves being a liaison between health insurance enrollees and health plans, I frequently find myself talking to parents whose children need specialty care. Although they have “black and white” questions about benefits, providers, and copays, I hear something else in their voices. I hear the very non-definable and nondenominational parental prayer that everything will be okay.

As a parent, I have a sense of that place from which the parental prayer comes. I have been fortunate that neither of my children needed extended hospital care when they were young. My daughter’s broken foot at the age of three was a challenge but it has become more of a “childhood war story” than an experience that still affects her life and her attitude about the medical field.

When I had the opportunity to write this post, I consulted two friends whose children needed specialty care when they were young. J’s daughter had multiple surgeries for cleft palate when she was very small and has had other orthopedic procedures. N’s child was born with torticollis which caused plagiocephaly —  as an infant he required a helmet, physical therapy, and many out-of-town specialist visits (as an older child he still needs specialized care for hypotonia, dyspraxia, visuospatial deficit and central auditory processing disorder). There were recurrent themes in each of their stories:

Coordination

We know as adults what a pain it can be to navigate the medical system. Referrals, lengthy stays in waiting rooms, confusing lingo …. the list is endless. Dealing with coordination issues when your child is the patient is even more daunting. Both parents I spoke with talked about what a difference it makes when there is a concerted effort by the medical team to coordinate your child’s care. For example, J’s child needed two different dental procedures and the provider was persuaded to do them both while she was under anesthesia, instead of anesthetizing her twice. Things that don’t seem to make a difference on paper can make a world of difference for a child who has anxiety issues.

How Do They See My Child?

J. said it best: “At the moment that provider is seeing my child, I want it to feel like they are dealing with my child and my child only.” In my experience, specialists can be pushed for time, especially if they only visit your town monthly. Does the specialist put all that aside to look you and your child in the eyes, and then to explain to you as the parent what to expect?

What is the quality of their work?

One of J’s biggest recommendations is to research the success rate of a physician you are considering using for your child. If a facility is not transparent and forthcoming with data, think twice.

I am grateful to have an opportunity to share ideas about how to make the best choices for your child (and you) should they ever need specialty care. Thank you J and N for sharing your experiences.

The Hospital for Special Surgery (HSS), in New York City, is one option for pediatric specialty care, especially in the fields of orthopedics and rheumatology.  HSS recently opened the CA Technologies Rehabilitation Center at the Children’s Pavilion providing comprehensive, individualized rehabilitation for both inpatients and outpatients from birth to 21 years. You can learn more about HSS via their website and their Facebook Page.

Both of my friends talked about the support and information they got from other parents. They encouraged anyone facing a specialty hospital stay for their child to take advantage of the hard-won expertise of parents who are farther down the road than you may be.

I promised you more about Gabrielle. As the parent of a dancer, I know how dismayed a motivated child can be to have physical symptoms keep her from dancing. Through HSS, Gabrielle has been successfully treated for pauciarticular juvenile arthritis. Her mother reports that she recently did a solo in a national competition and won a gold medal! Her complete story is here.

This video contains more information about the Hospital for Special Surgery:


I wrote this review while participating in a blog tour by Mom Central Consulting on behalf of Hospital for Special Surgery. A small donation to a charity of my choice was made in my name as a thank you for participating. You should consult with your physician or other health care provider before beginning any rehabilitation/therapy, sports training, or exercise program.”

 

“ithurts” (A Mama Kat Writing Prompt)

This week, random.org handed me Mama Kat prompt number four: What was the last thing your child cried about? Write a blog post about the problem in the voice of your child.

ithurts

One, two, three…Jeté!

OUCH!!


Ithurts…ithurts…ithurts…ithurts

I just landed wrong and ithurts…ithurts…ithurts


Tears are coming down my face (but I hardly ever cry in front of everyone anymore) …this is bad

Ithurts…ithurts…ithurts…ithurts

How am I going to keep dancing?

Mom will say what she always says – “Ice it! Did you take Motrin? If you love dance enough you’ll deal with the pain. No one said it was going to be easy.”

My feet already hurt all over from the pressure of dancing en pointe, from the bunion, from being on them all the time.

Ouch! Ouch! Ouch!

I wish I could take a break. Maybe I’ll have to take a break. Why did I ever kinda wish for a “minor injury” that would get me a break? But performance awards are in 14 days and the huge show is in 10 weeks and people are paying money to see the show and I want to get a gold medal at performance awards and …


I wish I could take a break. Maybe I’ll have to.

Maybe I can’t.


It hurts.

Author’s note: I would like to thank my daughter Tenley for the conversation that led to this post. In addition, I would like to thank her for reading over what I wrote and allowing me to share it with you. Her main addition was that she would have added a “why won’t my mom make a doctor’s appointment immediately?” kind of line in there somewhere. Also, the phrase that she said didn’t ring true as something she would envision me saying was “if you love dance enough you’ll deal with the pain.”

I would also like to thank Mary McManus, poet, author, and friend for gently yet firmly convincing me that I should share this poem with Tenley in advance of pressing “publish.” That was a very good call. Thank you, Mary. 

Mama's

Wordless Wednesday (Getting to the Pointe Edition)

Tenley got new pointe shoes.
The instructions tell us not to store them in a plastic bag immediately after use.
They’ll last “mush” longer that way.
That’s a relief.

The “mush” amused me so much I didn’t even pick at the oddly placed comma after the “recommend.”
It’s not like the Big Green Pen always has to prove a “pointe.”

Burgeoning Baby Ballet Bucks

My friend and coworker, Niki Pocock, was a dancer from the time she was a little girl.  Since she has a young daughter, our conversation often turns to our daughters.  Her toddler is just starting to test the waters of children’s activities; my teenager has been through dance, soccer, gymnastics, cheerleading, a few I have probably forgotten (but definitely paid for) and is now back at dance.  Her daughter is “little,” mine is “big,” but Niki and I both share big dreams for our children to find some path that brings them joy.

I appreciate Niki’s guest post, in which she shares her experiences thus far in the world of children’s activities (and parents’ pocketbooks).  Niki blogs at It’s All Wrong and you can find her on Twitter here: @NikiPocock.

My daughter is only 22 months old, but her extra-curricular classes already have put a dent in my wallet.

Now that I think about it, it started before she was born. My husband and I took the necessary childbirth class for $160 that at the end was unanimously voted as pointless (although I did meet a BFF there – we had baby girls within weeks of each other). If I heard that instructor talk about “normal” childbirth one more time I was going to strangle her. I was getting an epidural. No question about it. Back off, lady! Oh, and I just about passed out when I saw the video of a woman giving birth (I would later find out that my new BFF’s husband was having a great laugh at my progressively whiter complexion as the video went on).

Then there was the breastfeeding class (this one was actually helpful), and the breastfeeding support group (also helpful, as I walked in with tears in my eyes because it hurt so much. I survived and nursed my daughter for a full year – mostly because of the support from these women).

All of it? $$$$$ – Lots of it.

My daughter’s first class after birth was a Mommy and Me ballet class. This was a bit nostalgic for me because I danced ballet for 20+ years, including seven years performing with a company. The place she took her lessons was the same place I spent the majority of my dance life. But at $70 for just a summer semester (About $140 for the fall semester, PLUS a $50 costume AND recital tickets – not sure if that is going to happen), it hurt a bit. Oh, and then you have to get a leotard, tights and shoes (Did you know Payless has a line of American Ballet Theatre dance shoes? $17 vs. $30 at the local ballet boutique. I’m sold!)

And now we want to put her in swimming lessons. The local city pool offers $22 and $45 classes. Not bad, but that is just for a few weeks. We are thinking of putting her in a music class, but there is another $140 per semester, not including instruments and “take-home materials.” Do these people think we are made of money??? Aren’t we in a recession?

When you plan to have a child, you know about all the expenses that come with a baby. The hospital room, the crib, the clothes, etc., but hand-me-downs and baby showers work wonders. Even as my child grew I was set because my parents are in town and buy her everything under the sun (including aforementioned ballet leotard, tights and shoes). But what about these classes???

I hereby publicly thank my parents for paying for 20+ years of ballet classes (and pointe shoes at $60-80 a pop) and for attending all of my performances. My dad encouraged me to quit on numerous occasions; after all, I wasn’t going to dance the rest of my life. But the discipline and drive that I learned during my dance years has shaped more of my personality today than anything else my parents did.

The benefits set aside, I can tell you that my daughter had better be the best kid in the world if she expects her non-outdoorsy mother to sit in the hot summer sun while she plays soccer, softball and who knows what else – all on my dime.

Who has time to save for college when you are paying an arm and a leg right now? How do parents deal with all the expenses of money and time? I know I am not the first to experience this sticker shock, but geez, this has been quite an eye-opener!
Paula here — I know a lot of you readers have experience with years of children’s activities (and the related impact on the family bottom line); please share any comments/guidance you have!  And I will look forward to running into you next week!