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Wednesday, August 24, 2016

Practical Tips for Taking Your Loved One (or Yourself) to the Doctor

You could say our family has had a decent amount A LOT of experience with medical appointments. Of course, the last 7.5 years with John have provided quite the education, but then we also have three other children and my own medical factors requiring regular visits to the rheumatologist and high-risk OB (aka maternal-fetal medicine) with each pregnancy.  It may not come as a surprise that we are on a first name basis, exchange Christmas cards, and have the cell phone numbers of many of our doctors!
Dr. Berry in Boston; we love you!
In this post, I am going to share what I have learned over the years in hopes of making your future doctor visits both manageable and worthwhile.  Here we go!

1. Dress up for medical appointments!  Remember that you are seeing a professional, and YOU are also a professional (whether you are a professional mom/caregiver or perhaps you teach, practice law, or run a small business).  I have found that if I want to be treated with respect and as an intelligent human being with valid opinions, then I need to dress the part.  Additionally, “dressing for success” significantly boosts your mental and emotional poise.  And let’s face it, we often need the extra grit and mental fortitude in these types of situations.  When you dress professionally, you put your game face on and are ready to communicate clearly and effectively with your healthcare providers. 

2.  This leads me to my next point.  Remember that you are a TEAM with your doctors.  Your input is valuable!  You may not have been to medical school or be an expert in a certain field, but you certainly are the expert on yourself, your child, or aging parent.  My dad, a pediatrician himself, has been known to always ask a mother what she thinks is going on and to typically trust her instincts.
Granddaddy pediatrician, "Daddy B," with baby Andrew.
SO GRATEFUL to have a doctor in the family!  And we are crazy about him too!  :)
3.  Do not be afraid to speak up!  Again, you are a team, and the old adage is still true: there are no stupid questions (or at least most of the time, ha ha).  Additionally, don’t feel embarrassed if you need a doctor to explain something, especially highly technical medical jargon that is only commonplace in her field.  Remember that, just as this sounds like Greek to you, she probably does not know what a peplum is.  However, if you are a tailor or clothes designer, you would know that term.

John with our beloved Dr. Khwaja

Preparation is key…. So let’s back up…
Prior to the appointment:

4. Do any research or chatting with knowledgable parties (other parents are always essential resources for us) prior to the appointment.

5. If you have an opinion that you think will challenge traditional medical wisdom, it is game changer to bring in a medical journal article supporting your view, i.e. not quotes from a mommy blog, as informative as they can be (and great places to start, I might add).  I learned this the hard way (and continue to, as I’m always researching new possibilities for John in particular).  
     Here is one of my stories: I found all these compelling arguments on delaying the newborn baby’s bath following delivery.  It resonated with my gut and made logical sense.  Apparently, the vernix (the substance that covers the baby when they are born) possesses antimicrobial properties, providing a barrier of sorts to any harmful germs or “perinatal pathogens” that may be floating around.  Additionally, delaying the bath helps the baby maintain adequate body temperature and is a bonding connection to the mother. BUT, when it came time to go over my plan with my current OB (who I really love, by the way), all my great reasons came out in a jumble and I quickly became the crazy hippie who didn’t have a proper appreciation for the advancements of modern medicine (which I do).  Well, I came to my next appointment prepared, with scholarly article in hand.  He later told me that he ended up showing it to all of his partners in their next meeting.  And as a side note, vernix is not gross.  The nurses will still wipe your baby down, and by the time the next nurse comes in for the following shift, they will not even know your baby didn’t have a bath!  You can wait until you get home.      Links are included at the end for those who are curious about this particular example (a.k.a. other dorks like me).
Dr. Taylor, the man!  He delivered both of my Atlanta babies. Here we are post-Michael.
Dr. Chugani with baby Michael; she is also a great part of the team!

6. Write down your questions and take them with you (make a note in your calendar as to where they are and a reminder to bring them to the appointment).  It is shocking how quickly even pressing questions can fly out of your brain the moment the doctor walks in. Don't rely on your memory alone!

7. If you have children that are not being seen at a particular appointment, try to arrange childcare for them so you do not have to bring them with you.  You want to make the most of your time and not have the added distractions of a fussy, hungry, goofy, or even delightful child. 

8. Bring snacks and drinks as you never know how long these adventures take. Books and toys are also a plus.

John in the early days during one of many EEG studies in 2009.

9. Figure out the parking situation in advance; 
Arrive Early.   Many doctor’s offices addresses are actually different from where you should actually park.  Ask the receptionist what you need to know about finding the building and parking when you are on the phone scheduling the appointment.  Ask for multiple landmarks and intersections.  GPS is not enough!  Arriving early is an easy way to reduce anxiety and regroup before the appointment begins.  Oh, and bring cash!  Oftentimes, parking decks or lots charge and still do not accept plastic.

10. Bring a relative or close friend with you ONLY IF you think that will be helpful, but let them know in advance what you want his or her role to be, i.e. do you want your friend to be a silent supporter, take notes for you, or jump in and ask questions.  You may also want to let the doctor know that he has permission to discuss anything in front of your buddy.

11. Clear your mind, pray, meditate, do some deep breathing…. whatever it takes to calm any anxiety or tension prior to the visit.  Again, mental focus is key.  There is a time and place for tears or anger outbursts, and trust me, I have shed PLENTY of tears with nurses and doctors. And probably been a little witchy at times, too.  However, I often find I am in a better place and leave an appointment in a better place if I view myself as a professional and reserve my superfluous emotions for another time. 
Baby Daniel with pediatrician and mentor extraordinaire....  there are no words!!  We miss you, Dr. Wrubel!

During and after the appointment:

11. Ask your questions!   Have a pad of paper with you (yes, this is often a lot better in the moment than your iPhone, and it is clear you are not texting!), and make a note of additional questions that may spring from the answers you are hearing or items you are discussing.  I like to even ask a doctor if there is anything else I should be asking. 

12.  Remember that this time has been allotted for you or your loved one. Try to fight the temptation (or reality) of feeling rushed.

13. If any procedures, medications, or treatments are recommended, obviously ask why and explore the rationale behind each suggestion. Additionally, ask if there are any alternatives that should be considered and ask how all of the suggestions have worked in the general population. Percentages help, especially when weighing potential costs and benefits.  What would the medical professional recommend for his son/friend/mother/etc?
Yes, this is a real thing.  Resting Metabolic Rate study.
14. Write down any follow-up or action steps and go ahead and make notes of these in your calendar, both for implementation and alongside the date for your next appointment.

15. If you had labs are other tests performed, ask when you should expect to get a call with results or when is a good time to follow up. I receive better and quicker results if I call rather than waiting on an office to call me. Results often come in early, and it could take them awhile to get around to calling you. Additionally, scan in any and all records to your computer. It is extremely helpful to have electronic copies at the ready.  And if you don't have access to a scanner, you can download the CamScanner app for free!
With our favorite Boston researcher, Dr. Agrawal, and the talented Meghan!
16. Get any scripts (this is the fancy medical term for prescriptions) you need before leaving the doctor’s office.  AND if possible, ask the doctor or secretary to call in the prescriptions to your pharmacy, as that will save you a step and at least one trip to the pharmacy!  You may additionally require scripts for medical equipment, orthotics, further labs, etc.  

17.  Go ahead and make a follow up appointment, AND see how far out the doctor is currently booking. That way you know how much buffer time you will have should you need to change your appointment down the road.  Also, clarify who you will see during your next appointment and state your preference of who you would like to see (doctor, nurse practitioner, etc… there are benefits to all routes).

18. Congratulate yourself!  You did it, and you are a GREAT advocate!  Along these lines, I recommend having something planned to look forward to following the doctor’s appointment, whether it’s a candy bar like my mom always let us pick out following our appointments as kids, a dinner out, or a Netflix marathon. We often work so hard to accomplish these tasks, and then we move right into the next thing.  Let’s pause, celebrate, and thank the Lord for continuing to carry us through! 
Grateful for friends like Bryan and so many others (you!) who have supported us over the years!
Fortunately, he lived near Boston during our many trips up there!
Red Sox game, courtesy of a kind supporter of the hospital.
That time we almost walked into the dugout and were greeted by the grounds crew...


(For those of you who are wondering where “What’s in a Name? – Part 2” is…. Stay tuned!)


Just a few of many links on the amazing and protective properties of the vernix cases:


Monday, June 6, 2016

What's in a Name (Part 1)

What is the coolest thing you have ever done?  I imagine bungee jumping would be at the top of the list for some, but not for me.  I am way too afraid of heights—good thing I was never a contestant on the Bachelor!  Not backpacking across Europe either... at least not yet.  Undoubtedly, the most exciting thing I have ever done is to name another human being.  Hands down.  It is a truly profound and special experience— it feels like walking on holy ground.  My heart bursts a little when I reflect on having been blessed with this exhilarating privilege five times!  That is probably one of the reasons we have what many would consider a good number of children.  It’s kind of addictive!


Whether a family name, biblically significant name, or name you just LOVE, choosing first and middle names for someone is a great honor and responsibility (I hear there’s a similar warmth and pride in naming pets, cars, businesses, or culinary masterpieces).  I love hearing the names my friends come up with, because each name they bestow can capture their personalities and their hopes for their children so well!   Of course, some names baffle me, usually those of celebrity children or the redundant first and last name, i.e. William Williams. But, I digress.

It still gives me a thrill to speak each of our son’s full names out loud—the products of careful thought, much prayer, and many conversations in the car with Meade.  These children were loved before they drew their first breaths. 

Here are a few pictures of our “ten names,” our pile of boys we get to love and treasure:

John Meade (left) and William Warren 


Warren

Baby Daniel Hightower (who is 5 years old TODAY!)

Baby Andrew Kellam

 October, 2015.  Michael is 1 month old.


Michael Chester at 6 months

I imagine one reason that naming children is so very special and even feels sacred is that, in this act, we are not only reflecting our Creator by imitating His work in creating us and instilling worth to us, but we are also fulfilling His command to Adam and Eve to name and steward every living creature.  We are leaning into God’s intended purpose for us before sin and brokenness entered the world.  It is redemptive and humanizing to name and call forth.

What’s more, Romans 8 further develops our restoration in that God our Father adopts us, giving us true family as His heirs and co-heirs with his Son, Jesus Christ.  As “Christ-ians,” or “Christ followers” as a dear mentor likes to call us, we now carry our Lord’s name, despite the many ways we fall short and mar it.  Christ becomes our covering, our forgiveness, our salvation, and our worth. We have been brought into the fold.  We belong. 

The earthly picture of adoption demonstrates this truth so well. Recently, our dear friends Megan and Dave adopted a precious 3 year old from China.  Previously, this little boy had two different names, a Chinese name given by his orphanage and a name that was arbitrarily assigned to his file by the adoption network.  However, once this child was brought into the Rathbone family, he was not only given his father’s name, David, and their last name but also his very own name, Elijah.  This name was lovingly selected for him, just as names had been prayerfully chosen for their biological children.  This name, Elijah David Rathbone, forever binds this once family-less child with his true earthly family— the family that God had picked out for this little one before he was ever conceived halfway around the world or a reality for Megan and Dave.  

The Rathbone Children 
There is certainly power in a name; this little boy has been given the confidence and spirit of sonship, right along with his siblings, Noah, Emma, and Micah  (I love how each child’s name ends with the same “ah” sound… yet another sweet stamp of Elijah’s full status as a member of the Rathbone family). 

Can you believe this is how God views us?  Because of His great love, we can come to Him and belong to Him like His Son Jesus, confident and unashamed. We have been given “the right to become children of God—children born not of natural descent… but born of God” (John 1:12-13).  

What do you need to name and call forth in this season?  Moreover, how do you need to alter the way you view yourself in light of the fact that you are a beloved, chosen child of God?  He is your worth.  Your covering.  You belong.

Stay tuned for Part 2…

Click here to read more about the Rathbones' journey.

Image courtesy of http://www.childrenstorytales.com/maxwell-the-elephant/



Wednesday, May 18, 2016

Let Them Eat Cake

The Lord has been working on me… the often painful, but always rewarding kind of work.  Not content to leave us as we are, Christ comes in and prunes, searches, encourages, and matures.  I hope I can start writing again and share more about what I’m learning.  But we’ll start with a story about some stale cake. 

There has been a slice of cake in our freezer chest for almost seven years.  In recent months, the presence of this cake was sending me into a major funk, messing with my already-fragile postpartum emotions.  This particular piece of cake, which once brought hope and encouraged faith was now only bringing despair and longing.

The cake has been saved, moved across states, and stored since John’s baby dedication at church when he was almost seven months old in August, 2009.  You can read the label on the tupperware holding the remaining slice:

“John's cake to eat when he crawls.”

Back in 2009, I decided to save the piece with John’s name on it as a sign of faith and hope, even if the answers to our prayers for John’s growth and development lingered.  It provided a way to move forward in trust, while knowing we had that symbol waiting for us when the proper time came.  Looking back, I honestly don’t think I ever thought I would still be praying for my seven year old to simply crawl or sit up independently, despite his severe challenges and poor prognoses as an infant.

So you can imagine how, as the months have rolled into years, this cake sitting at the bottom of our freezer chest has brought mixed emotions.  I get a glimpse of it from time to time as I rummage through that chest to pull out frozen meat or veggies, most often to be used for John’s food we make and puree.   And as I’ve caught those glimpses recently, I have been downright depressed.  It felt like a slap in the face—like another reminder of all the dreams we had that never came to fruition, for a life with twins and the type of life we pictured for John even after burying Warren. 

I spoke to a couple of close friends about what the heck I should do with this cake that was now majorly bumming me out.  I felt the whole situation was a big Lose-Lose.  If I kept it, then the cake remained this depressing reminder of what has NOT happened, how the Lord has NOT provided in these particular ways, and how we can shift our focus off of the wonderful things John IS doing and how the Lord HAS provided in his and our lives.  And yet, if I threw it out, I thought that would indicate I was “giving up” on John and possibly an aspect of my faith in God, too.  As though I were throwing in the towel and surrendering to defeat in this area.  My sweet mom even offered to store the cake in her deep freezer if that would bring more peace.

When explaining my predicament and anguish to a dear friend, she whipped out an amazing quote that had been posted on Instagram that week:
“Go and love someone exactly as they are.
And then watch how quickly they transform into the 
greatest, truest version of themselves.
When one feels seen and appreciated in his own essence, 
one is instantly empowered.”
-Wes Angelozzi

This wise friend proclaimed, “M.E., you need to get that cake out, eat it, and celebrate exactly where John is!  
Then get rid of it!!” 

A light bulb of joy and peace went off in that moment.  She wanted for me exactly what God wanted for me: to enjoy John exactly where he is.  And what a gift to have friends that can boldly speak the truth we need to hear!  To have her and countless others who will continue to pray for John and however his journey is to unfold (just as I do for my other children), but to also pray for freedom for us in the present situation.  To know that “different” is not “less than,” as my counselor always reminds me.  To set aside some of the striving and deep longing that has marked much of my journey since 2009.  To continue to pray for development and to provide opportunities for John, but to also shift my perspective on what that development may look like and to get rid of this albatross around our necks.  To celebrate life, God’s goodness, and our sweet son, as he is today: a sweet 7 year with two teeth missing (big boy!), contagious laughter, the relationships he forges, and the joy he brings to so many.  As a person, not a milestone in the "What to Expect When You're Expecting" book.




The plot thickens.  I mulled over my friend’s brilliant suggestion for a couple days, finally telling Meade, “Alright, I have a plan.  We are going to get the cake out and eat it.”  Then I let him know that Friday night was the night.  You won’t believe this.  As I was about to take the cake out of the freezer, this text came in from a sweet friend who used to faithfully help us with John’s “patterning” (the exercise we did with him for years that required 3 adults in hopes of promoting the neurological input and connections needed to spur development and, specifically, crawling).  She now lives many states and miles away and had no idea that her out of the blue text was confirmation and a gift of love straight from the Holy Spirit.  Here’s the screenshot of our exchange:



John HAS grown and developed since those patterning days, and it is a wonderful thing.

So eat cake and celebrate, we did:




And it wasn’t too bad!!   And then, let me tell you how GOOD it felt to throw the rest away, container and all!  John, like every child, is special and unique and deserves to be celebrated for who he is, for who God is growing him to be, and for how God sees him in light of eternity: whole in every way.

Here is what the cake looked like in its original glory:


John remains a precious child of God.  We claimed Ephesians 2:10 for our twins when they were born, and they are both still living this out, even if it looks different but never less than we expected:

For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.

 -------

As an afterword, Michael was dedicated to the Lord this past Sunday at church.  It was a special time as we brought our entire rambunctious crew up on stage with us and both sets of grandparents beamed from the front row.  I thought I would include a picture of each of them at their respective baby dedications, all wearing the beautiful christening gown that was made for Meade and worn by him as a baby (our boys have also worn camo booties underneath!).  And yes, the best quote of the day was Daniel pointing to Michael, saying, “He looks like a princess!”  Yes, he sure did.  :)

John's dedication in 2009:




Daniel's dedication in 2011:


Andrew's dedication in 2014:

Michael's dedication on Sunday (you can see the booties poking out):



And of course, Warren is always in our hearts and remains a precious gift to our family: