Friday, August 29, 2014

Hannah's First Casting Appointment

Yesterday was Hannah's first casting appointment at Texas Children's.  We have six casting appointments scheduled over the next seven weeks.   All of them are located in Sugar Land except for this first one which was held in the Medical Center.  Hannah's doctor was in surgery all day at that location and managed to squeeze in her appointment that afternoon.  

We arrived at our 3pm appointment and began our long wait in the waiting area! Luckily I was anticipating this and brought books, snacks, a baby doll + accessories and more.  Hannah loved looking at the fish, telling other children not to touch her chair or her baby and of course, taking care of her doll.  We let her walk and explore as much as she wanted, knowing it would be her last chance to walk for at least 2 months.  

At 4pm Bryan spoke with the front desk and they finally called us back.  Hannah's doctor arrived soon after and met us in the casting room.  

Sweet baby waiting to get started

A before picture of Hannah's feet.  We plan to take the same picture each week when they remove her casts and get ready to put a new pair on.

Hannah's casting was done by her doctor and a casting tech.  It was clear this was not their first rodeo putting casts on feet like Hannah's!  Hannah watched as they wrapped her feet and legs and let the plaster set.  The physician held the wet plaster on her foot in place as it dried.  The theory is to stretch the foot and slowly train it to have correct placement.  

Hannah was so very brave and stoic during this process.  She was fine through most of it but at one point as she leaned against her Daddy, her bottom lip began to quiver.  She turned to me and said in a little voice, "Mama".  I held her hand and told her she was doing a good job... and then gave her M&M's!! She was happy to have a treat and that kept the tears away while the doctor and tech finished the job.

The finished product
Bryan took detailed pictures of Hannah's toes so we would remember their initial appearance and placement in the cast.  Changes in color or not being able to see her toes could indicate circulation issues or that the cast is slipping.  

Almost immediately after leaving the casting room Hannah began to cry.  I think reality set in that these things were stuck on her legs and they did not feel good at all.  She screamed through all the hospital lobbies, the elevators and the parking garage.  She continued to scream for most of our drive home through rush hour traffic.  We tried positioning pillows under her feet for comfort, offering her snacks, drinks or toys, turning on a movie in the car.... nothing helped.  She screamed and thrashed around and dry heaved for what felt like forever.  It was a horrible, helpless feeling for me and I know she was so upset and frustrated.  Hannah would drift off to sleep only to start screaming again after 5 minutes because of the pressure and discomfort from her casts.  Like I said, the casts are slowly stretching her foot and that can be uncomfortable the first couple of days.

Mad, sad baby girl :( 

Asleep for a few moments

Finally awake, and very angry.
Hannah wanted to hold my hand so I sat twisted around in the front seat for the last hour of the drive.

As we got close to home she agreed to have a drink and wanted some Cheetos.  If Cheetos and M&M's make this process tolerable for her, then that is what we will do!
At this point she still wanted to hold my hand but didn't want to eat anymore, so she kept her hand in the chip bag and held my hand through the bag.

As we pulled into our driveway, Hannah yelled out "HOME!".  She was so excited to come in and see her brothers, Granny, and her dogs.  She enjoyed sitting in her little chair and yelling "GO!" at the Aggies.  We were glad to see her enjoy her first football game in spite of the circumstances with her legs.

That night Bryan (who keep in mind had driven 5 hours that day on top of the casting appointment!) went to work from midnight to 6am.  Hannah slept in bed with me and it was a pretty rough night.  She could not get comfortable so I was constantly helping her reposition herself and wedge pillows around her to provide support.  She would get so frustrated and randomly swing her heavy, casted legs around.  I was afraid I would wake up missing some teeth if I wasn't careful!

Thankfully as the day went on, she handled the casts pretty well as long as I kept Motrin and Tylenol in her.  She enjoyed playing with some toys, riding in her wagon and was even able to take a 3 hour nap in her room! Unfortunately Hannah is battling an ear infection and some sinus junk all while getting used to casts, so this is just not a fun week for her!  She went to sleep without problems in her crib tonight and I am hopeful that I will get more sleep tonight.  Regardless of the sleepless nights or difficult days, Hannah is worth every challenging moment.

While this casting process is certainly not easy or fun, I have been reassured by many mamas who have 'been there done that' that the first 24-48 hours is the worst part.  We are hopeful Hannah will become used to her casts and figure out ways to be mobile with them on.  Most of all, we have great hope that these casts will provide drastic changes for her feet.  We feel confident in her treatment as we move forward and are excited to see what she will be able to accomplish once she has flat, straight feet.

Thursday, August 14, 2014

Another Perspective

Today was Hannah's appointment with Texas Children's orthopedics department.  I am thankful that we were able to get an appointment so close to the Shriner's appointment while all the information is still fresh on our minds.   The appointment was @ 2pm in Sugar Land so we took the boys to Bryan's parents' house around lunch time.  We were then able to get on the new Grand Parkway toll road that took us all the way from Cypress to Sugar Land in around 45 minutes with no traffic.  It was fantastic and so much less stressful than driving to the Medical Center!

We were taken back to an exam room at 2pm but unfortunately the doctor did not come in until around 3:15.  Luckily we had "bee bee" aka Hannah's baby, snacks and Mickey Mouse Clubhouse on YouTube.

Waiting in the exam room with Daddy

A pretty sweet set up for our little 2 year old:
"bee bee", a snack cup, and Mickey Mouse on YouTube

Tired of waiting- trying to escape!

Coloring on the exam table paper to pass the time
Of course bee bee had to be sitting next to her

When the doctor came in we were up front about the evaluation she already had at Shriners and that we had also sought out the opinion of Dr. Van Bosse in Philadelphia.  This new doctor agreed wholeheartedly that the surgeries planned at Shriners were not the correct path of treatment.   In fact, he mentioned that the surgeries planned for Hannah have been proven to yield 'fair' and 'good' results-- but never 'excellent' results.  His suggestion for Hannah was to do serial casting:  weekly casts for 5-7 weeks.  This would help to get her foot/ankle into a straight position.  However, there is a lot of tension in her foot coming from her Achilles tendon that is keeping it from being flat.  He recommended a minor procedure to release the tension in both tendons.   The goal of all of this would be a flat, brace-able foot which is exactly what we are hoping for.

This new surgeon's plan is perfectly in line with the recommendations of Dr. van Bosse in Philadelphia and with what most people agree is the best approach for club foot caused by arthrogryposis.  While Hannah's feet may look like a typical presentation of club foot, the underlying issues in her anatomy will mean that her feet will always fight to go back to this position.  She will likely always need some kind of orthotic or bracing at night to keep her feet corrected.

We felt like the surgeon today was optimistic about Hannah's prognosis and realized that we were there to make a decision for our daughter.  He encouraged us to think over his plan and do what we felt was best for her.  We were not surprised to hear that we are not the first patients who have come to him after having a less than pleasant experience with the other surgeon.  This new doctor also emphasized that casting is a great way to start because it is essentially 'no harm, no foul'.  We can't do any harm by casting her feet, but we could do lots of harm by rushing to the OR and cutting up the structure of her foot!  At the end of her exam the doctor dictated his note for her chart in front of us.  This was a good way for us to listen again and get the full recap of his assessment of Hannah.  Hannah was less than interested in what he had to say and whined to get Bryan to let her use the hand sanitizer mounted on the wall. He gave in just to keep her quiet and she proceeded to sanitize her hands at least 20 times while the doctor spoke 90 to nothing doing his dictation.  I had a hard time not laughing.

Leaving these kind of appointments is tough because it is like drinking from a fire hydrant.  It takes me awhile to process everything and I'm always so thankful I have Bryan to talk through everything.  Bryan and I discussed our experience today and have decided to pursue treatment at Texas Children's.   We want to research the specific tendon release this doctor suggested to make sure we are comfortable with it, but other than that this feels like a good fit for us.  The scheduler is supposed to call me tomorrow morning to set up Hannah's 5-7 consecutive appointments for casting.  We are not sure how soon they will fit us in but trust God is sovereign over the timing of Hannah's treatment.

We feel so much better about the plan for Hannah now that we have another opinion and new opportunity for treatment!  While wearing double leg casts is going to be no fun, we are hopeful and excited to see the results of this treatment.  It's our hope that Hannah will make great progress towards walking after she's received treatment from Texas Children's!

Wiped out after a long appointment & missing her nap

Monday, August 11, 2014

A Change of Plans

In late June, Hannah was seen for the second time at Shriners to evaluate her feet and develop a treatment plan.  From our first visit to the second visit, the doctor's approach to treating her feet changed significantly.  We went from planning to do weeks of serial casting with a heel cord release (a minor surgery) to doing a short period of casting followed by a 'full release' to cut tendons and muscle and place external pins on both feet.  We went along with this plan, scheduled all the surgeries and appointments and began to pump ourselves up for the challenges ahead.

About 3 weeks ago I started to feel unsettled about her treatment plan.  Nothing specific happened to make me question it- I just began to feel like maybe it wasn't the right approach.  Looking back now, I truly believe it was the Lord prompting me to research and ask questions so we could protect our daughter and make the best decisions for her.  I voiced my concerns to Bryan and he encouraged me to contact other physicians for second opinions.

I contacted a physician in Philadelphia who is considered the nation's specialist in AMC.  I have emailed him twice and heard back the first time in 16 hours and the second time in 1.5 hours.  He shared his philosophy on treating children with feet like Hannah's and gave some clear direction on what we should and should not do for her.  He also believes, based on pictures I sent, that Hannah's feet are mild and straightforward to correct.

I also asked for experiences and opinions from other AMC families.  Across the board, everyone encouraged us to get a second opinion and not settle for going straight to the OR to fix Hannah's feet. I am so thankful that the Lord prompted me to start asking questions.

When we shared our concerns with the doctor in Houston, he was obviously less than thrilled that we didn't agree with him on what was best for our daughter.  I am thankful for my articulate, intelligent and calm husband who did most of the talking.  Bryan thought it would be best for him to talk more and told me so before the appointment since I was a little too "passionate" about the subject :)  The doctor in Houston agreed to try serial casting on Hannah but not until mid September.  He seems confident that it will not work although family after family tells me that the physician in Philadelphia corrects their child's feet with casting only and no major surgery other than the minor heel cord release.

In the meantime, we have an appointment with an orthopedic surgeon at Texas Children's on Thursday.  We will see if that physician shares our desire to take a conservative, gentle approach over surgery as a first attempt.  He was recommended by another AMC family so we are anxious to hear what he thinks about our daughter's sweet feet.

We also have an appointment in Philadelphia with the top notch doctor! Unfortunately he has a loooong wait for new patient appointments so we will see him on June 29.... of 2015!  We will continue to seek out opinions here, and potentially do a series of casts with Shriners or Texas Children's, until we can be seen in Philadelphia.

I had spent a lot of time preparing myself emotionally for casting- thinking about what it will be like for us and for Hannah, how I would bathe her, will she fit in the shopping cart, what clothes will she be able to wear, and on and on.  While the change of plans today is the best decision for Hannah, it feels a little like an emotional roller coaster for all of us.

We want the very best for Hannah and don't want to put her through unnecessary surgeries that could cause lifelong pain from resulting scar tissue and stiffness.  I'm thankful that while we of course need to address her condition - we are not in a life or death situation here.  Most of all I'm thankful that we have the ability to seek out the best medical care for her and make decisions for her well-being, all while trusting that God is sovereign over all of it!

Sunday, August 10, 2014

Six Months Gotcha-versary

Today marks six months since Hannah was placed in our arms in the Civil Affairs office in Zhengzhou.  It feels like ages ago that we were saying goodbye to our boys, boarding a flight to China and anxiously waiting for our daughter to arrive at the office.  I went back and re-read my post to describe that day.  When I reflect back on that day, on our time of preparation and on the past 6 months I am overwhelmed by God's faithfulness.  He has continued to show up and be faithful to us and to Hannah in very tangible ways.  

Before we were matched with Hannah and in the months after we were matched with her, our biggest prayer was that God would keep her heart soft and open to love.  We were of course praying for her health and safety-- but we knew that medicine could treat her physical needs, but that the scars of emotional trauma can run much deeper.   It was our greatest hope that she would be held and loved while there and that she would be open to us as her parents and bond well to us.

Those prayers have been answered with abundance.  Hannah is doing incredible.  It sounds so cliche, but it feels like she has been in our family forever.  Hannah is securely attached to us as her parents and to her brothers.  Hannah seems to find a lot of joy in the regular routines of our family - praying before meals, going places together in the van, our nightly bedtime routine and saying "Night night, ayoo (love you) and 'morrow (see you tomorrow)" to her brothers.  She gives and receives affection within our family well, seeks us out for comfort, has an appropriate fear of strangers, and is confident enough to play independently and do well in the church nursery.  Hannah is eating well, growing, speaking more, playing in age appropriate ways and showing many typical 2 year old behaviors including some small moments of drama ;).   To say that so many things with her are 'normal' or 'typical' is an incredible blessing and testimony to God's faithfulness to Hannah and to us.  We are grateful!

Hannah, we love you more than words can say.  You are adored, treasured, and a representation of God's love and faithfulness.  We are so proud of the progress you have made over the past 6 months and cannot wait to see how you continue to grow and change in the months and years to come!  

Sunday, August 3, 2014

Hannah is 2!

On Friday we celebrated Hannah's 2nd birthday!  Like most two year olds, Hannah did not really understand ahead of time what birthdays are all about.  It seems that both of our boys had birthdays figured out and knew to be excited by the time they turned three.  Even though she may not remember any of it, I was excited to make her feel special as we celebrated her birthday.  

We spent Hannah's actual birthday as a family- Hannah woke up and opened gifts, we had lunch at a Chinese restaurant and family dinner at home. On Saturday we had grandparents, aunts, uncles and cousins to our house for a "Tea for TWO" birthday party for Hannah.  

And now for picture overload...

Hannah's last night as a one year old

Hannah's birthday gifts & balloons ready the night before

Our sweet 2 year old with her gifts!

Hannah had lots of help opening her gifts

Hannah got books, puzzles and a Bitty Baby that looked just like her!
Here we are (bedhead and all!) right after she opened Bitty Baby.

Posing with Bitty Baby on the window sill

Getting ready to blow out the candles on her birthday

Hannah got so excited when the smoke would rise from the candles... we blew out candles again and again and again, often with lots of brotherly help!

Watching the video of her happy birthday moment over and over again on Daddy's phone

Posing with Bitty Baby on the front porch.  I love this sweet little girl!

The next day was Hannah's tea party.  I left in the morning to drive to Bryan and pick up Hannah's birthday cake @ 8:30.  On my way home down Highway 6 I was driving in the left lane.  A truck in the right lane lost a large arm chair from the back of their truck.  It hit the van behind them, then bounced across the highway right in front of me and hit my van.  It was terrifying! Luckily the only damage was to my front bumper-- I was ok and so was the cake!  

While I was gone Bryan got the kids ready for the party and did other last minute preparations.  Joshua got himself dressed for the party, complete with fairy wings and one of Hannah's headbands.

Birthday girl all dressed in her tea cup outfit!

I love planning my kid's birthday parties and decorating.  It was especially fun to do a girly party for the first time!  

The drink station

Kids tea party table

Food table in our dining room

Amazing cake by Peace, Love & Cakes in Bryan

Unbelievable cookies by Haute Dots Bakery (our dear family friend, Ann!)

Hannah's smash cake- which she did not smash! She does not like getting dirty.

Party favors- Pink Lemonade play doh in mason jars

Welcome sign to match the invitation

Before the party started we caught my niece Charlotte sneaking a sandwich from the food table!

Cousins at the tea party table

Cheese! Happy birthday girl having fun at her party

Not sure what Caleb was doing, but Zach thought he was pretty funny!

So glad I actually remembered to take pictures of Hannah with her grandparents!
Hannah with Granny and Daddy Bob

Hannah with Gran Jan and Pop Pop

A group shot of our family that came to the party!

We adore this birthday girl! 

Hannah was very stoic during the birthday song.  She never would blow out the candles like she did the night before!  Eventually her brothers helped her out.

Now it's time for presents! Hannah had lots of helpers!

Wearing Bitty Baby's hat on her head while using her new Bitty Baby changing table

Charlotte loves to have her picture taken!

And Hannah does too!

Playing with a new tea set from Gran Jan & Pop Pop

Pretty sure this is not the intended use of the Bitty Baby changing table! Her mischievous face cracks me up!

To our daughter on her birthday-- You are sweet, smart, spunky, resilient and beautiful.  We are so thankful that two years ago your birth mom in China chose life for you.  This time of year is bittersweet as we celebrate you and remember your hard beginnings.  I keep thinking about your birth mom and wish there was a way she could know you are safe, loved, treasured, and thriving.  While we will never know details about her or the beginning of  your life, I choose to believe she loved you and wanted the best for you.  We are honored to be your family.  It feels like you have always been with us and we are so thankful that you act like this is where you always belonged.  We pray that the year to come is full of joy, new milestones and love for you, our precious daughter!  Happy Birthday Hannah Elizabeth Ping!