a visit to the orthotist

Our daughter Vivienne was born with bilateral clubfoot.

Her feet were successfully casted, using the Ponseti Method, while she was still in China.


But she has a condition that is a relatively common sequela of clubfoot, known as foot drop.


She is missing the muscles on the top of her foot that help her to lift her toes. So she has to work really hard to lift her foot and swing her toes through as she walks.


For now, there is no correction for this condition. And, without intervention, she would probably continue to develop her own method of walking.

But we really don’t want that. We want to help her, now while she is still young, to learn how to walk properly, and to walk without having to work her hips and knees and ankles so hard with every step.


So the best option for Vivi are AFOs. Or ankle-foot orthoses.

These are custom made, so a trip to the orthotist for a set of Vivi-sized molds was required.


Once they are finished, these AFOs will help lift her toes as she goes to walk and should help her to walk more easily, with less stumbling.

So that’s great.


But she has to wear them, in theory, forever. And anyone whose ever spent a hot afternoon in uber-hot tube socks can imagine the misery of having to wear plastic boots year round.

So that’s bad.


But, as we’ve done with all our children’s special needs, we will take this new adventure one step at a time.

Whatever medical needs she has, we’re ready.

After all, she is the bravest of us all.

Whatever Wednesday

Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.

She did it!!!
adoptive momma (China) Amy at Finally a Family of Five!… celebrating the seemingly small success (that really IS huge) of a little girl who has a cleft palate

Firsts adoptive momma (China) Shirlee McCoy at And Then There Were Seven… in adopting an older child, you give up the privilege of being there, but that doesn’t mean that ALL of “the firsts” are gone – and sometimes they are even more beautiful

honeymoon, interrupted
adoptive momma (foster care and Haiti) Kristen at Rage Against the Minivan… navigating discipline issues those first few months home with a newly adopted preschool-aged child

Her Special Need adoptive momma (Ethiopia and China) Christie at Bushel and a Peck… after adopting through the non-special needs program, a momma discovers her daughter’s special need

Video Clip of Sarah Tying Her Own Shoes adoptive momma (China) Karen at Always In My Heart… a video clip of her daughter, who has a limb difference, putting on her socks and shoes, then tying her shoes

The new kid in town
adoptive momma (China) Kristi at Fireworks & Fireflies… about her newly adopted daughter’s adjustment these first few weeks home and information about Sturge Weber Syndrome (SWS)

Thinking Long Term: Should They Be Moved Up?adoptive momma (Russia, Ukraine and Siberia) Christine at Smiles & Trials… decisions about grade placement as her children, diagnosed with fetal alcohol syndrome, continue to grow and mature

A conversationadoptive momma (China) Sandra at The Daily Grind… a conversation with her daughter about being deaf and wishing stars

next shared list

A new shared list is expected to be released tonight.

Exciting news for anyone hoping to be matched with a waiting child!

Firsts

I posted this to my blog two days ago but thought it might be worth posting here, as well. Especially in light of the new shared list. This blog is, of course, dedicated to special needs adoption. For older children who wait, age becomes a very specific special need. I often wonder what it is that holds us back from opening our arms to children who are older. I suppose there are as many reasons as there are people. It has never been my purpose to push people into stepping out of their comfort zones and into things they don’t feel prepared for, but I have tried to share honestly and from the heart about the journey I’ve taken in the hopes that others might be encouraged by my story. The little snippets of our lives that I present here are only a tiny measure of the joy that Cheeky (adopted at age seven) has brought to the entire family.

I know…I’m an annoyingly prolific blogger today!

But, I just had to post these photos of Cheeky. Her birthday is on March 31, and she is very anxious for it to arrive. To understand that, you have to understand that she has three siblings who have birthdays in February and March.

Ever since February 2nd, she has been watching those siblings get presents and cake and, most importantly of all to Cheeky, things in the mail.

Yep. She’s watched them come…boxes and envelopes…and she has watched as her siblings opened those boxes and envelopes. She’s hung over their shoulders as they’ve read the cards and, gasp!, pulled out money.

And she has known that one day….one very special day…something would arrive in the mail with her name on it.

Today, folks, was the day!

We arrived home from the library, and I saw the box sitting on the stoop in front of our door. “Hmmmm,” I said, “It looks like someone got a package. Maybe it’s for….Cheeky.”

And she nearly killed herself jumping out of the van and rushing to look. “Is it? Is it for me? Do you think it’s for me? What is it? Is it for my birthday??????”

“Well, it’s for everyone,” I said. “Grammy sent it. But I bet there is something special in it for you.”

“For my birthday?” She squealed and shoved past her brother (and then had to get lectured on not shoving past people)to get a better look.

I carried the precious package into the house and set it on the counter. It remained there while the kids put away their library books and unloaded the groceries.

And Cheeky? She could barely stand it. She kept walking over to the box and staring longingly at it and then hurrying to put stuff away so she could see what was in the box.

When the moment finally, finally, FINALLY (I’m sure that’s what my daughter was thinking) arrived, we all gathered around the homeschool table, and I opened the box. My mother had packed candy and a few other items as Easter treats for the kids, but Cheeky cared nothing about the chocolates or sparkly bracelets. Her gaze had fallen upon it. The wrapped gift. The one that looked like it could maybe just possibly be a present for someone. A birthday present for someone. And, of course, Cheeky knew that her birthday was next.

“Is it for me???” She gasped, and I lifted that present out of the box, and I handed it to her.

“Yes. It’s for you.”

“And there’s even a card,” she said in wonder as she raced to the couch where all the kids sit when it’s their birthday and they’re opening presents.

And she opened that card, folks, so carefully. Opened it and looked at it and wondered over it and asked me to read it to her, and then she clutched it to her chest, and she said, “My first birthday card.”

And I really did get a little misty eyed.

I pointed out the gift card that had fallen into her lap and she studied that for a moment, and then it was time.

Finally, finally, finally time

And she ripped the present open and her eyes went huge with joy as she pulled out a bright yellow dress.

“It’s mine,” she said. “My first birthday gift. And Grammy, she gave it to me.”

“That’s right,” I said.

“And she buyed it at the store for me for my birthday.”

Then she raced into her room to put it on. She came skipping back down the hall, her face lit up with the kind of pure joy that only someone who has never ever received a birthday gift and then suddenly receives one could know. She asked all her brothers if she was beautiful in the dress, and they all agreed that she was. Sassy oohed and ahhhhed over the twirly skirt while Cheeky twirled and whirled.

I thought that maybe I should be sad that Cheeky is about to turn eight and has never been given a birthday present before, but all I felt was joy because all she felt was joy. She did not waste the moment mourning the past. She focused absolutely and completely on the experience.

I’ve heard people say (and have probably said myself) that it is hard not to be there for a child’s first time rolling over, first attempt at crawling, first step, first tooth, first word, first….first…first. Adopting an older child means giving up the privilege of being there. It means accepting that those memories are forever lost to us and to our children.

But all is not lost.

We have these moments, these most perfect and remarkable moments when we see our children grasp not just what it means to celebrate a birthday or Christmas or a lost tooth, but what it means to belong to a family, to have a blanket of love to wrap snugly in, to hear a chorus of voices shouting….You are ours and we are yours and this is what forever means. We bear witness to their transformation from children who are adrift to children firmly anchored, and the beauty of that….it is breathtaking.

Enjoy the photos of Cheeky wearing her first ever birthday gift!

Whatever Wednesday

Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.

A few things…adoptive momma (China) Karen at Always In My Heart… on privacy and blogging about her childrens’ various special needs, plus some details about life with spina bifida

Update: God is GREAT!!!an adoptive momma (China) at Room For At Least One More… a momma shares how her daughter’s recent cleft palate surgery went

Griefadoptive momma (domestic and foster care) Julie Martindale at Not Just An Ordinary Life… processing her son’s recent diagnosis, a momma clings to God’s lessons

What’s Up?adoptive momma (China) Nicole at The Story of My E’s… one mom shares how life changed from homeschooling to public schooling for a few of her children in order to better meet their special needs

Luke adoptive momma (China) Nicole at The Baker Sweet’s… sharing her thoughts after a recent visit to the Kennedy Krieger Institute

An acronymadoptive momma (China) Kristi at Fireworks & Fireflies… more news about her daughter’s glaucoma, the implications of that new diagnosis with other known medical conditions and what the future looks like

Happy 2nd Forever Family Day!adoptive momma (China) Kim at Musings from Kim K… two years in pictures, including photos of her daughter post-open heart surgery

What Happens?

Special needs sound so scary to many. And truthfully, the known special needs can be pretty overwhelming. But what if there is some unknown special need? Something that isn’t discovered until your child is home?

One of the main purposes of this blog is to advocate for special needs kids and talk truthfully about special needs. So what does happen when a surprise diagnosis comes up? As a mom to a few special needs kids, this last week we found ourselves in that exact situation. A surprise life-changing diagnosis!

For starters, we look back now rather dumbfounded…how was it that we didn’t figure it all out sooner or even just suspect that our newest daughter was hearing impaired? {Of course, in our defense, the truth is that for 8 years while Jubilee lived in China no one else seemed to have a clue either!} We just didn’t put two and two together at all.

Not that knowing Jubilee was hearing impaired would have changed anything. It wouldn’t have. She was ours from the moment we saw her little face on the agency website. BUT still. A surprise is a surprise and having a daughter who is hearing impaired definitely means a “new normal”.

So what did we do when we learned of this surprise diagnosis? What would you do? How did we feel? How are we processing it all? What does it mean?


Jubilee with little sis Elizabeth {they think they are twins!}

Here’s what we have found so far……..the moment we learned that Jubilee was hearing impaired – our love for her grew exponentially. No kidding. We feel we could not love her anymore. Since we came home on December 24th the bonding process had been ever-so-slowly moving forward…but suddenly it sped to completion. Our hearts knit with hers in a deeply profound way. We were amazed that in one incredible instant a few words spoken by an audiologist and everything completely changed. Jubilee is ours. She needs us. She’s counting on us. It is almost unexplainable.

We are so thankful for this breakthrough. Jubilee needed us to know that she could not hear us talking. She needed us to know that the reason she was not learning English was because she was only reading our lips and how could she read our lips when she doesn’t know English? We had no way of knowing. She had no way of telling.

We cannot thank the Lord enough for doctors, tests, and yes, even for a surprise diagnosis. It knit us together as a family even more than we already were….it made us determined to work together so that Jubilee understands God’s deep love for her just the way she is.

It will all be okay. The Lord has always been faithful to us. He’s not about to forget us now. Infact we are confident that He has been working behind the scenes on Jubilee and our behalf to prepare our entire family for this. We are taking one day at a time and one decision at a time and He will be faihfully walking by our side each step of the way.

Braxton

by Tamera, mom to Braxton from China with an SN of limb difference

Yesterday we awoke before the crack of dawn. This was a big day indeed. Braxton and I were headed to Shriners Hospital to receive his first prosthetic leg. It was merely 5:00am when we headed out and yet Braxton was wide eyed and quiet in the still of the early morning hour. As we drove the now familiar highway, he periodically asked questions revealing his mixture of emotions varying from excitement to uncertainty and disbelief to daring to dream. After four and a half years of tackling the world so differently from most of his peers, Braxton found himself on the brink of new opportunities and countless possibilities. A prosthetic leg. Wow, it has been a long journey to get here. I have dreamed of this day since we first saw Braxton’s captivating, orphaned face in a picture on a waiting child list in March of 2008. And now nearly two years later, his dream… our dream… is being realized.

While we were driving, I too, had many emotions and questions running through my mind. Fear, uncertainty, excitement, anticipation, joy. Questions like – Would he be able to walk? Would he cooperate? Would he like the prosthetic or be overcome by this ensuing fear that is so normal? Will he reject it or embrace it? I decided to take all of these thoughts and emotions captive and bring my every fear to the Lord. He is so faithful and He met me right there in our car on that highway and gave me a confident peace – a peace that I knew that no matter what today’s obstacles entailed, He would see us through.

When we arrived at the hospital, the sun was coming over the horizon and the morning felt promising. I decided to jump in with both feet and believe that we would see some miracles today. Braxton and Bryce joined me and the excitement was building. We made our way up to that little room on the second floor with big mirrors, parallel bars for learning to walk, and a history of previous children learning to put one foot in front of another. As soon as Mr. Dan from prosthetics walked in the door, Braxton pressed “Do you have my prosthetic? Can I try it? Is it ready, cuz I am!” Mr. Dan looked shocked at Braxton’s readiness since during our visit two weeks prior Braxton had many tears mixed with whining and complaining as he was so fearful of the whole experience. With no delay, Mr. Dan brought out and presented the new prosthetic leg fully armored with the Disney character Lightning McQueen and a lever for bending the working knee. Braxton squealed with delight and asked to put it on. Within no time, we were learning the many little maneuvers required in order to put on the prosthesis.

Then the big moment. Like a little warrior girded up for battle, Braxton stood timidly for the first time on two shoes. Next, Mr. Dan picked him up and took him to the parallel bars. These bars are significant for me as I am the mama of a competitive gymnast who propels his athletic body with great strength and technique around these types of bars. Now my youngest son at the age of 4 ½ gripped these bars for the first time and would inspire and awe me with equally amazing athletic potential – he would take his first steps.

Better than anything I had ever dreamed was the feeling that I experienced when I saw Braxton grab those bars and bravely take his first steps. Sweet, miraculous victory – God is so good!


Braxton has a long road ahead of him as he learns to walk and maybe even one day run. As he learns, he will fall. When he falls, Bryan and I will continue to urge him to get back up, dust himself off, and try again as we cheer him on. It will continue to be a journey with obstacles and road blocks, free-ways and toll booths, highways and speed bumps, setbacks and victories… but isn’t that how we all get through this journey called life? I am confident that our Great BIG God will continue to help us show Braxton how to maneuver through this new course of his journey.

Yesterday our son not only took his first steps in learning to walk; he also took huge strides in learning to believe, to hope, and to dream! Don’t you love a good story of victory and overcoming the impossible? Me too! But, we vow never to forget that there is a price that was paid before the victory could occur (sound like any other story you may have heard). There was an amputation, a second surgery for wound control, and more surgery to come. There was loss, pain, grief, fear, phantom pains, a spica cast, a stinky stump, stitches and more stitches. There were many miles and hours in the car where Braxton watched the Disney movie Cars at least 237 times as Tamera listened to inspiring speakers like James Cecy, John Piper and John MacArthur on CD for hours on end while traveling in the dark of the early morning. There were many hours waiting, many professionals planning, superb surgeons’ gentle hands and notable expertise, several tears and tantrums, multiple tubs of PlayDoh and several dozen stickers. There were many prayers whispered and several cries out to the Lord. Many words of encouragement from friends and family and much patience splashed with tolerance from Braxton’s siblings were also in the mix. A leg was amputated and now a new form of mobility is possible. We are blessed to parent little Braxton as his life is a constant reminder to us that all there is always a price for freedom and there is always a sacrifice in victory.

We have learned that Braxton’s physical disability does not define him. Limbs are truly overrated. What defines him is that he is our son – a significant and vital part of Team Wong. What defines him is that he is a courageous little boy who trusts his GREAT BIG GOD and in Him alone there is sweet, miraculous victory.

Good News Bad News

Disclaimer: After being home from China one week, my mushy jet lagged brain is having trouble coming up with something profound and beautiful. So it is what it is, folks!

In special needs adoption, there is a lot of good news & bad news. (What am I saying? In LIFE there is a lot of good news & bad news, amen?)

Good news: More special needs children are being adopted.
Bad news: A few agencies are being less ethical in the process.

Good news: The U.S. is trying to make the paperwork as thorough as possible to prevent unethical procedures.
Bad news: It adds lots of time to the waiting for your child to come home.

I could go on and on.

I guess I’ve been thinking about good news and bad news a lot these last few days. We have been home from China one week. It has been one more roller coaster of good news/bad news.

Good news: Your son is delightful!
Bad news: His heart is very sick.

Sigh.

Thankfully, good news and bad news does not define our days unless we allow it.

I have heard more than one mom say that her child’s special need does not define her child. AMEN to that. I think we can expand that perspective to everything else in life. The only things that define us are what we CHOOSE to define us. If I ALLOW bad news to define my days, I choose despair. If I ALLOW my faith in a miracle-making God to define me, I choose hope.

Today, I choose hope.

Bad news: Some things in life require taking a huge risk.
Good news: It is worth the risk!

Posted by Picasa

One Hundred Good Wishes

One Hundred Good Wishes is where community supports adoptive families. It is a free fundraising web-based tool for adoptive families seeking to raise partial or full support for their adoptions. One Hundred Good Wishes website was inspired by the Northern Chinese tradition called Bai Jia Bei, or “100 Good Wishes” quilt – a tradition which engages others in the celebration of a new life. Like the tradition, adoptive families can use this site to not only share their adoption journey and gather good wishes as a keepsake, but also to use as a resource to raise support for their adoption endeavor.

How does it work? If you are in the process of adopting and are homestudy-approved, then you can set up a FREE One Hundred Good Wishes page to raise financial support for your adoption! Create a One Hundred Good Wishes page with a bio, explaining your adoption endeavor and your fundraising goal. Invite friends, family, and others to visit your page and give a good wish. Those who visit your page can leave a good wish message, upload a picture, and give a monetary donation. Donations are made directly to your PayPal account and there are no fees to use the One Hundred Good Wishes service.


Even if you are not currently in process of adopting, please help spread the word to other families that may be interested in fundraising for their adoption. Visit the website and join One Hundred Good Wishes on Facebook!

it’s all from the waist down


Fu Gao Mei’s legs, sent in an update from China

(The post below was written a few weeks ago on my blog, Tell Her This).

Yesterday was our first spinal defects clinic, where we met with her entire ‘team’, including her neurosurgeon, urologist, pediatrician, orthopedist, developmental psychologist (or was he a psychiatrist??), physical therapy, social worker, gastroenterology specialist, and her nurse practitioner who connected us to all of these people. It was here we discussed and learned about her condition, and the complications that have arisen from it, and how to manage them head to toe (or more aptly in her case, waist to toe).

We walked away with so much information it may take me some time to process all of it. Thankfully they are sending us a full written report of all the aspects of her care that we reviewed. I was impressed with this comprehensive approach and am grateful we are able to use this facility rather than the one here in our town (they don’t have a spinal defects clinic anymore, unfortunately). It’s nice that the members of the team are talking to each other, keeping her goals comprehensive while they each focus on their area of expertise.

Here’s what we know.

The neurosurgeon suspects she has a myelocystocele as there is still a pocket of cerebrospinal fluid (a fluid filled cyst) at the base of her spine. From what I’ve read, it won’t be possible to know definitely if this is her actual diagnosis. She also has tethering of her spinal cord, which for the time being we are just “watching”. I am considering a second opinion as apparently the tethering is pretty significant. And though we are certain her brain is not affected, we will do a base-line MRI in the next month (scheduled now for end of March).

The orthopedist wasn’t overly concerned about immediately addressing her contractures, but I disagree. Call it instinct, but I feel the sooner we begin working on correction, the better. She cannot wear any shoes since none of them stay on- and while the social aspects of this are absolutely relevant, I’m more worried about the practicality of foot covering :O) We’ve had our coldest winter in years and it’s been a struggle keeping her feet warm. Not only that, but she’s really active and is out on the jungle gym with her peers, not to mention crawling everywhere- so shoes will better protect her feet from injury. I got the feeling (as much as I find this doctor to be incredibly nice) that he believed my main concern was whether or not Ellis could wear “pretty shoes”. At any rate, Monday at P.T. I will begin talking to her therapist about how I go about beginning the process of serial casting (this was recommended by 3 people we met with yesterday, surgery being a last resort). ** Clarification since you see the photo above, she does not have a clubbed left foot, she is possibly missing tendons on the ankle or they are ineffective. You can see her right foot is contracted pretty severely (points downward), often referred to as “foot drop” **

We learned from the developmental specialist what we already knew: she’s shy. He suspects she may be the type that is so “brainy” that she will lack in the more “normal” range of social skills, though he’s not that concerned. I was as shy as she was. I have no worries at all. Once she opens up to you… well, you’re IN like Flynn (not QQ! Though I swear I would have stolen that name if didn’t belong to such a great friend’s kiddo). We also learned that we are her primary speech therapists, and hearing it from that perspective really opened up how important my role is- not just as her mom, but as her teacher.

With the GI specialist, we talked about potty training and we’ll make that a part of her routine in hopes of achieving “social” continence, since she has a neurogenic bowel (though sometimes she does tell us when she needs to “cho cho“- I’d say 60% of the time or more).

Physical therapy made sure we were connected with the right people here in our town to begin serial casting. They checked how she was doing in general and basically talked about her improvements since we’ve come home.

Her urologist (who I absolutely found to be thorough, concise, & patient) talked about the results of all her testing last week. This is what we were most anxious to hear about. And the news, well, it was disappointing, but not something we can’t manage. First, she doesn’t void on her own at all. A neurogenic bladder, unlike ours, is cone shaped and rippled with muscle along the outside. Due to the interruption of nerve signals from the spina bifida, when her bladder begins to contract to “go”, her urethral sphincter closes- which is common with her condition. Normally, as we void, that sphincter automatically relaxes. So, at most, she leaks urine. We will begin intermittent catheterization within the next week or so (we go back for a separate appt next week). **update: We’ve been cathing now for 2 weeks** It’s necessary she be cathed in order to prevent infection from non-sterile urine being present in her bladder (which is what happens when you have urinary retention or residuals that are very high after voiding). Since she’s had 2 known very severe infections (UTI’s) with a big bug, and then one less severe bug, along with many high fevers, this is crucial. And she’ll learn to cath on her own, probably fairly quickly I suspect since she is a “can do” kinda girl :O)

As for her kidneys, well, we knew she had some reflux into her left kidney, but not how much. We were told it was a Grade 3-4 (which is moderate to high). Not so good. I asked about the amount of damage that can be caused by that- especially in light of the fact that she’s never been cathed and likely has had this issue for the 4 years prior to coming into our lives. He said there was still a lot of “healthy” tissue and that he didn’t suspect she would ever need dialysis. However, what damage has been done is irreversible.

We also learned she has hydronephrosis of the right kidney (and this kidney is smaller than her left kidney). What was baffling to the doctor was that her ureter appeared normal, so there is a chance that there is some other cause of the swelling- a primary obstruction that is not related to her bladder. For the time being, we’ll assume it’s her bladder due to her history, and with daily medication and catheterization, he hopes to see improvement on her next renal ultrasound in 3 months.

She’ll not only be on medication to help relax her bladder (so she can hold more urine, preventing the back flow), but also on a low dose antibiotic indefinitely to prevent and treat colonization with various bacteria. This wouldn’t be necessary if she didn’t have a higher grade of reflux into her left kidney. Thank goodness this amazing daughter of ours is such a trooper at taking any and all medicine, even the worst of it, in fact.

We have our challenges ahead and will one day be facing surgery for her bladder, but probably not until she’s school aged. We were informed that she will probably face detethering of her spinal cord at some point, if not multiple times, in her life. She may have to have tendon releases done surgically if the casting isn’t successful. And depending on how well we can manage her bowel, there also may be a procedure in her future for that.

But every single bit… all of it… will be worth it to help our perfect little girl live a life that is independent, and as fully functioning as possible.

She’ll be guiding us most of the way, I would imagine. She has that way about her.

Yesterday, as we were leaving the clinic, I asked her:

“Did you have a good day today?”

M-n-M: “Yep”

Me: “Is everyday a good day?”

M-n-M: “Yep”.

I’ll take that to the bank with her any day of the week and twice on Sunday.