CT Scan and Results for Charlotte

On Monday, we had C's big CT scan appointment.  She was a little nervous, but we were able to get her excited about being the only one to get her picture taken as well as eating special bread (her favorite) afterward.

C picked a friend to bring with her - to my surprise, it was my old doll, Lisa!  She picked it because it was mine when I was a little girl. : ). It made my heart happy to see my old friend loved by my own little girl.

The girls were well behaved.  It's nice to have people smiling at your children wherever you go.  : ). They are both little Sunshines!

And they are both so good with each other and for each other.

The gentleman who ran the CT machine LOVED Charlotte.  And thankfully, C was calm and didn't falter for a moment.  Thank you for praying for her.

The CT tech kept saying that she was so cute and sweet.  When he placed the little pillows around her head to steady it, she let out a clear, precious little, "Fank you!"  He melted then and there!  He was so enamored with her that he let her push the buttons to run the machine.   He also quickly scooped her up when she was done, which surprised C and I!   On a positive note, it was the first time she looked distressed about a stranger touching her and tried to come to me and get my attention.  She didn't want to be held by a stranger!  This is huge in the area of attachment - something we've really been working hard on!

I was so proud of her - no tears!   I promised her bread (her favorite treat) after the CT scan.  We stopped at a local coffee shop and the girls devoured a sausage and cheese biscuit and an orange and pecan scone.

They really, really wanted more...

And so did their mama...

C lobbied hard for the brightly colored sugar cookies.  FL wanted chocolate... Or everything, really.

But we just enjoyed the treats we had.

And I promised them new backpacks and a short visit with friends.  They were thrilled with their backpacks!  A yellow one for Flora Lin and a light pink one for Charlotte!

Later in the week, we recieved the results of the scan.

The spot affected in C's brain is on the right side and so very, very, very small that some might debate that it is even there!  This is fantastic news!

However, I feel like this puts us back at the beginning again.  The neurologist called it a malformation, not a stroke.  I spoke with the assistant, not the actual doctor, so it was a bit frustrating because she couldn't answer all of my questions.  We don't go back until October, but are advised to continue doing easy for her left side.   Maybe I shouldn't be pressing the issue so much, but the physical therapist felt we might want to see an orthopedic doctor about C's spine.

How hard should I push?  How much should I put my child through?  Am I doing too much?  Not enough?  Should I continue to push therapy?  Specialists?  Should I let it all go?   She functions well... But should I settle?   I am her advocate...  the only person in this world that is fighting for her.

I am so thankful so little of my daughter's brain is affected, but I have this feeling that there's more to this.  That feeling just won't go away.  So I'll pray and press on.  Joyfully, though.  It is a privilege to be able to fight for such precious little people.  

I'm so thankful for your support and prayers for my family and my children.  Keep them coming and we'll keep you posted.  

CT Scan Prep for Charlotte, Farm Style

Why do these two girls look so happy about bedtime?

Well, because it's NOT bedtime!  They're about to go through the CT scanner at The Leaning A Hospital!  The pillows help keep our heads very still.  The big blankets protect us from radiation.

Of course, we have highly trained scanner technicians!  I know the scanner may look like a shirt box and a calico cat, but trust me, it's way, way more!

The humming/purring sound the machine makes can be a little unnerving.  However, our technicians are here to reassure you and provide the utmost in quality care!

Practice makes perfect!  

Our sweet Charlotte is having a CT scan on Monday to confirm a stroke that most likely occurred early in life and tell us what areas of the brain might be affected.  We would appreciate your prayers for calmness for Charlotte (no sedation due to her heart condition) and for minimal areas to be affected.

Thank you!  : )

Charlotte's Neurology Appointment

This week we had many appointments for the girls, and one included a trip to the neurologist for C.

Our pediatrician gave us the referral.  The doctors at the IAC were hesitant to send her to one, but the more I thought about it, the more I wanted to look deeper into C's weak left hand and unique way of running.   Most, including the doctors, have politely brushed off my concern because C hides it so well.   So, I was very glad to be having this appointment, anxious for answers and prepared to provide whatever evidence was needed to convince the specialist that my daughter needed help.  

Thankfully, I didn't have to convince her of anything.  In a matter of minutes, she saw what I was seeing.  The neurologist suspects that C had a stroke at some point, but does compensate very well.  What I didn't think about is that now C is at risk for seizures.   She described what a mild seizure and a very serious seizure might look like, and what to do in each case.   

 It shook me up a little bit because it reminded me that in some ways, Charlotte is still medically fragile.  I forget about her heart defect all. of. the. time.   But it's there.  Challenging and life threatening things have happened to this sweet, gentle little girl.  Seizures can be big or small, frequent or a once in a lifetime event. 

 But I could loose her.  

A year ago I didn't know if her file would ever be released to us.  Nine months ago I didn't think China was going to ever send the necessary paperwork.   Four months ago I held someone in my arms that I didn't even know.  Now she's a part of me like nothing else ever has been.  

My feelings toward families who have medically fragile children or children that have died are much deeper now than they were before.

Children are precious.   

Life is precious.

I'm so thankful for these sweet ones and all that they bring to our family.  I am thankful that I can at least help my daughters in this way, that I can give them good medical care.

Of course, I'm doing my best to pour out so much more upon them.

My little Dolly (as she likes me to call her) will be having a CT scan next week to confirm and determine the severity of her stroke.   Like the neurologist said, we can't undo what happened, but with therapy and support we can help her succeed that much more.

Please pray for calmness for Charlotte as she goes through something very scary for her.  Please pray that the affected areas are minimal.

Thank you, from a very precious little Dolly's slightly worried mama.

Three Week Appointment at IAC

We had our three week follow up appointment in Birmingham at the IAC today.  They were going over the results of previously drawn blood work, running a few more tests, following up with the family therapist, being evaluated by the physical therapist, rechecked by the doctor and Charlotte was being evaluated by the audiologist (Flora Lin tomorrow)!  Yes, makes me tired typing it!  

Charlotte did great with the audiologist and her hearing tests all looked good!  She was a little scared at first, but once she saw that fun was involved and Mama wasn't leaving, she was ready to play.  Her hearing looks fantastic!

So far, everyone is impressed with her verbal abilities just like her parents.  : )

The girls did so well with all that was being done to and with them.  I try to set them up for success by bringing things that I know they enjoy doing (and pack well).  It does mean we have to lug around a lot and we make messes, but it is a four to six hour appointment!

Things that they enjoy are a travel playdough kit, books, crayons, magna doodle, their dollies, lacing cards, taking a quick walk, and stickers!   I try to mix up what I bring each time and make sure that we don't use the item the week before we go so it stays special.

Stickers only come out on airplanes and in doctors offices.  : ). We looooooove putting stickers everywhere!

And if you can, bring a very silly Papa with you.  They make all the difference!  

The dollies are the girls' constant comfort item.  They go where we go if it is a long trip.  We always have Dolly!

Food is another big helper.  I let the girls eat as often as they want and pull out our regular snacks (fruit, water) as well as many that I don't normally give (cereal, goldfish, pretzels, yogurt puffs, juice).    Someone in particular loves to eat!

Someone else loves to play, take a walk and visit.

Now we are on our way home with full tummies from a quick stop and the girls are asleep in the back. : )  Our day had so many positives and we thank God for that!  Both of the girls had chromosome tests run just to be safe and they came back NORMAL!  Yay!   We think the girls are fantastic no matter what anyone or any test says, but we are glad to know that they both have one less obstacle in life.  With C we were checking for 22Q Deletion Syndrome which often comes with her particular heart condition (TOF).   With FL we ran a general panel because CL/CP often comes with many different things.   I have been holding the girls' hands as they fall asleep each night and asking God to remove this obstacle, should it be there.  Not for me, but for them as they have had so much to go through already and things to come as well. 

 Thank you, God, for hearing this mama's prayer and giving me peace while I waited.  

 And please don't get me wrong.  If one or both of our daughters had a syndrome, we would still feel that God is with us, answering our prayers differently than we wanted, but still acting according to a bigger plan that only He understands.

C is having some issues with her left hand being much weaker than the right, though it does function.  They are unsure as to what caused this.  It could've been a small stroke, an injury or lack of using it for some unknown reason.  Something that they noticed that I didn't see was something off in her running gait.  I just thought it was the run of a little prissy girl, but she's not picking up her feet correctly and almost swinging her legs.  It is very subtle to me and doesn't seem to inhibit her running at all.  The trouble with it is she compensates so well and functions so well that she most likely would not qualify for any therapy.  I'll have to put on my thinking cap and come up with some ideas to do at home to try and help.  : )  In six months we will revisit it and see if she needs intervention, an MRI or nothing at all.

As for fine motor skills, both of the girls are on target.  FL has a few gross motor delays, but they were surprised how well they both were doing.  They kept saying, "You know they are not supposed to be doing this well, right?!"  : )   Having C as a big sister has helped to motivate her to do more.  They both compliment each other and help each other to grow in so many ways.  It is really wonderful to witness firsthand how God is working in their lives as individuals and sisters by bringing them and us together as a family.  There is a lot of brokenness in adoption (and life in general) but God can do such beautiful things with the ashes of the lives of His children.

So, all in all our appointment was very positive and the girls are on track to grow and progress, even with a few little hiccups. The farm has been a blessing in helping them to improve.  I am also thankful for all of you who gave monetarily, gave books, learning toys, supplies and so much more.  We've used them each and every day.

Tomorrow we meet with the cleft team. I am excited to have a plan to help Flora Lin and restore her health fully.  Though her surgery is a little daunting, I am ready for her to talk and she is, too!  : )

We're so thankful for your ongoing prayers.  We will let you know our plan when we have it. : )

Charlotte - The First Month Home

I wrote this close to the date of 12/20, the first month home.  I am just now getting around to posting this, even though we are getting close to the two month mark of being home.  

This is written for my daughter, Charlotte, on our family blog of memories.

Dear Charlotte,

   Where do I begin?!  You've been home one month now, and with us almost two.  I don't know that you've changed so much.  I think it is just that we now know you better and can better understand each other.

   You're a precious child.  I don't know how to tell you all the things I want to tell you about your first month home.  My heart is too full and there are SO many memories already.  So, I will be honest and say that this letter to you will be disorganized and it simply can't contain everything.  You'll never know fully all of the things in my head that I want to share with you, but I know there are things forgotten already, so before more escapes me, I'll write what I can.

  You're a very bright little girl.  From day one, you seemed able to pick up on what we were trying to tell you or ask you to do.  Your first english word was, "Hey!" and "Uh-oh, Spaghetti-O!" was very close behind.  Now you are speaking and signing so many words I can't keep up.  I was counting at one point, but it has to be over 100 by now!  My favorite words that you say are your sister's name, Flora Lin, because you pronounce it like, "Fo-ah YIN!" and the number seven, which you pronounce, "seh-ben" (so precious it gets me every time!)!  Every day there are new words that you learn.  Most recently was big and little (and you understand them, too and use them to refer to things now) and today you learned hiccup, which you pronounce "hap pup," which is also too cute to correct at this point!  Of course, I love that you call out, "mah-MAAAAA!" when you wake up or when you do something awesome you want me to see, or when you make a new discovery that you want to share with me.  It's all day every day, but I'll definitely take it, as you would only refer to me as "big sister" in mandarin in China.   

Your favorite song to sing is still "Twinkle, Twinkle, Little Star," but you now sing it in broken english, where you sang it perfectly in Mandarin before.  It is both amazing and bittersweet to watch you learn a new language and slowly loose your old one.  When  you first joined our family, you would talk to yourself quietly in your native language while you played.  Now and then you would say your name, Xiao Ping, to yourself as you arranged your doll or toys.  I hear you whisper "Charlotte" and "alllll riiiight" (something I must say very often!) as you straighten Dolly's blanket or stack your little play papers together.  You are Charlotte Nicole Xiao Ping - as much as I want to see you learn new things and grow into our family, I don't want you to loose any of your old self.  You're beautiful.

 I so enjoy sharing new things with you and watching you try so hard to understand and put together our crazy language and try to figure out all of these new things and new people and new animals in our lives.  You do everything you can to figure out how to talk to us and it amazes me the words and phrases you are picking up and the words you are stringing together to form a little sentence.  You are resilient and you are determined to be cheerful and enjoy your life, that has thrown way, way too much at a little girl already.  You can count to ten in english (I'm certain you could in mandarin as well) and you help me count how many eggs the chickens have layed each day when we do farm chores together.  You enjoy watching the cows next door, especially the "bee-BEE cow" and the chickens are a close second, even though you used to scream like a banshee when I would bring one out for you to pet!  You like the cats, especially Henri (Hun-weeeee!!!!) because you have so much fun spotting him all around the farm and loudly calling for him.  You will pet Scout (SEE-gout) and delight in her antics.  Today you told me "Charlotte Horses" when I was reminding you that I was Charlotte's Mama and you were Mama's Charlotte.  I asked you if the cats were Charlotte's cats, and you shook your head no and repeated,"Charlotte Horses."  I'm glad you claim then and can't WAIT for you to ride them!  You are still fearful of the dogs, though you like to talk about Hershey and Ella and say their names so well.  The other day, Papa brought in the dog bowls for me to put medicine in.  When you saw them, you said, "Hersh-an-Ell-AH, hun-GWEE" (Hershey and Ella, Hungry), which showed me that you knew exactly what their bowls were and who they were for!

You do a very good job following your mama's type A instructions, as I believe you are a type A girl yourself, just like me!  Also like me, you like knowing that everything has a place and you prefer it to be very neat and tidy.  After I got you into your pajamas the other night, you leaned down as I was trying to brush your hair.  Though I asked you to stand up straight, you wouldn't, and I realized you were unfurling the corner of the bath mat so it would be perfectly straight!  Once you completed the task, you stood up and turned around and smiled, as if to say, "There!  Now I feel much better!"

As a rule follower, you feel very intimidated if you don't know exactly what I want or if the thing you are doing doesn't have clear instructions that are the same every time.  Puzzles can be challenging for you, though you are so smart.  You are not very confident doing them because there is no clear, orderly formula to complete every puzzle, each time.  Sweet Charlotte, I sympathize with you as I look for the rules, order and boundaries every day in life.  Not everything is black and white, and I sometimes struggle with that, and know that you will, too.  But please know that even though you may feel that the rules keep you safe, everthing in life does not fit neatly in a box.  Please know that the gray areas of life can be quite beautiful and freeing, too!

Last week, you finally completed a very troubling puzzle, putting each piece in the correct place by yourself - you were so happy I thought you would explode with your clapping and hoorays!!!  You even let me take several pictures of you to commemorate the moment!  For now, your confidence in yourself when doing puzzles has been restored and you look forward to them.  Remember that in life, you may not be confident in what you are doing, but that doesn't mean you CAN'T do it!  Like me, when the obstacle looks almost impossible, you decide it is better to not attempt than to attempt it and possibly  fail.  This has held me back from so many things in life, dear daughter.  Bringing you and your sister home was one of the first times I totally leaned on God, though the obstacle before me seemed impossible.  I am confident that you will learn to keep that fear of failure or making a mistake from holding you back from wonderful things in life!

Some of your favorite things are your Dolly that I made you (makes me SO happy!), your mama (yay!), books, sunglasses, pretty dresses and fancy clothes, jewelry, bows, helping out around the house, being held by your mama, being tickled, bath time, being out around people (you are definitely an extrovert, like your papa!), shoes and sometimes papa, as he can be SO funny!  You will eat most anything, though we were told you didn't like fruits and vegetables (60 % of our diet in this house!).  Your least favorite foods are hard to tell, because you will eat most anything!  You really, really like bread-type foods, crackers, sweet potatoes, potato salad, soups, rice, noodles, Chinese food (of course!), french fries, summer sausage, pepperoni, cookies (almost anything sweet) and things that are heavily seasoned!  From that list you would think I feed you nothing but junk, these are all things I RARELY feed you(other than sweet potatoes, soup and rice)!  You will eat any fruit or veggie that I give you, though you don't usually ask for them.

I've taken you out shopping with me a couple of times.  You most enjoy getting ready to go, because we pick out a fancy dress and you get to wear a necklace that has a locket on it with your iniitals.  You also get to come in my bathroom and sit on the counter and play with my makeup bag while I get ready.  You are neat and careful with almost everything you handle, so I really don't ever have to worry about you messing something up, like my makeup bag or a fancy necklace. 

You like to be clean and neat.  I am regularly summonded to "help" with your bow when it slips out of place or you get a speck of oatmeal on your finger.  You like everyone else to be neat and clean too.  One time, you sister was picking up dried grass clippings and sprinkling them into the air where they then landed on her jacket and stuck.  You marched over there to her like a little granny and started briskly brushing off the grass on her jacket with your little hands, continuing as she kept adding more!

Despite your neatness and compliant nature, you love to laugh and be silly!  You are a happy girl, and though sometimes overly dramatic, you bounce back to your sweet, sunny self very quickly!

You love to snuggle and sit in "mama's chair" with mama and just talk.  You are affectionate and quick to give a hug and a kiss (though this was NOT always so) and seem to thrive on physical touch.  Our first few days together you would only sit on the edge of my lap, but you let me rub your back and stroke your hair.  When you ask to sit in my lap, papa and I joke that I am your recharing station and your batteries are low on mama love.  It's true!   If something happens in our schedule and I am not able to hold you, carry you and sit with you like I normally would, you become quiet and distant.  I am always happy to give you love, though as I waited for you SO LONG and these years together will fly by, I know!

Charlotte Nicole, you have taken part of your mama's name and I see so much of myself in you and so much of your papa in you (that's why you and I get along so well - you are A LOT like your papa in your personality!).  Like me, you like to dress up a  little and go shopping, yet you enjoy time outside playing on the farm (I enjoy being outside so much!).  Our family would not be right without you.  I can't believe that we almost missed you.  Not because we didn't want YOU but because of the fears that were put into our heads by others (two is too many, you can't handle this, China will never give you two, she could have a syndrome {who doesn't?!}, etc.), because of lables like "Special Focus Child," "Small head circumference" and "Moderate to Severe Special Needs" because of a presence in this world that doesn't want beautiful things to come from ashes.  Charlotte, you are fearfully and WONDERFULLY made!  We fought hard for you - we fought social workers, doubt, negative comments from others, doctors who warned us that 'this would be hard' and ourselves, as your special need was not on our list of "things we feel like we can handle."  I remember looking at the need and thinking, "maybe, but it sounds like it would come with so many things we can't handle.  The chances of us being matched with a child with this are probably slim to none."  I never forgot that, though, and it tugged at my heart. I always felt God wanted us to parent a child with a heart condition and I was ready and open for that.  They day after we were matched with your sister I called the angency and told them I didn't care what the need was, please run any and all files past us FIRST.  Let US make that decision.  I didn't want to miss you - I KNEW you were there.  Once the possiblility of being able to look at your file came up, I didn't care about the obstacles (and there were so many), I fought in any way I could to know you.  You were ALWAYS wanted!  The day after you were found, your papa and I were shopping for presents for our future child (children).  I begged to buy TWO dresses!  "There's someone else out there!"  I told him.  You were always in my heart.

As much as you are my child, my daughter, MINE ALWAYS, I know that there is a part of you and your heart that doesn't belong to me.  And that's ok.  You can always keep those pieces of your heart for your birth family and your foster family.  They are part of you, too, always.  But, oh, that your papa and I get to be blessed enough to call you OURS!!!  We thank God for letting us be your parents more often than you'll ever know!

I could go on and on, Charlotte.  But I'll stop here before my mama heart spills over too much.  Know that without a doubt that you are wanted, loved, cherished and wonderful just the way you are!  We love you!

We had a song that was very significant to us while we were waiting to see whether or not Charlotte's file would be released, and wrestling with so many unknowns.  If you'd like to hear it, click on the link below and it will take you to a video.

http://youtu.be/ARIe3PUgu84

Charlotte's First Cardiologist Appointment

We took C to the cardiologist today for the first time.  We had been to the office before when we first recieved word that we might be matched with a second child.  Our social worker wasn't sure she was going to allow the file to be released to us for many reasons and there were so many unknowns about C at the time because we had never seen her file.  It was after our meeting with the cardiologist that we sat in the parking lot, looked at each other and held hands and promised C that if her file was released to us that we would love her forever, no matter what the medical outcome.  A very sweet memory...

I wasn't nervous about the appointment, as I was pretty sure that they wouldn't be taking any blood from C and she seemed so normal and healthy (I would never know she had a repaired CHD if no one told me).  Nonetheless, we had some questions and concerns and it is good just to know.  Since day one I have been able to "feel" her heartbeat, and it has always felt a little strange - not a strong, clear, single beat, but more of a prolonged "squish", if you will. 

I didn't tell C until the morning of the appointment because I didn't want to cause her extra anxiety since she now knows the sign and word for doctor.  She'd had a big meltdown over some simple sorting we were doing with counting bears the night before, so I thought it best not to add to it. 

C was nervous when I told and signed that, "Papa, Mama, Charlotte and Flora Lin are going to see Charlotte's doctor.  Mama, Charlotte and Flora Lin will go in Mama's car to Charlotte's doctor.  Papa will go in Papa's truck to Charlotte's doctor.  Charlotte's doctor is going to look at your scar."  We talked about it most of the way there when we were not talking about the BIG TRUCKS on the road that they are so fascinated with!

Our appointment didn't seem to have much of a wait and they kept us moving from station to station so the girls never got bored (FL was slightly miffed that her blood pressure didn't get taken).  They took C's blood pressure from her arm and from her leg (which the girls reenacted with their doctor playset at home, unprompted by me - families of children with special needs:  get a doctor kit!  This has helped the girls process their appointments so much!  We save the kit for "now and then" use so it stays special.), took her height and weight (she's up another half pound from last week!!!), etc.  After that, C said and signed, "All done, doctor!" and of course we told her there was more.  They took us to a room with the sweetest tech - they told C they were taking pictures of her heart and needed to put stickers and clips on her.  She made it lighthearted and fun, and even blew bubbles for C.  C, who can be dramatic, even laughed a few times!  Such a brave girl and such an awesome xray tech!

After that, we met with the nurse, answered a few questions and then the doctor came in and took us back to do an ultrasound of C's heart.  C had to take her dress off and the room was dark (though there was a TV with children's shows on) and she got very scared when we put her on the table and though compliant, began to cry.  I was able to calm her down after diverting her attention and she did very, very well.  I know that has to be so scary for a little one who has had SO much happen in the last month or so of her life.  I was proud of her.

Not long after the ultrasound, the doctor came in to talk to us.  He explained the heart condition again and told us that even the scar from her surgery was better than they used to be a few years ago (he said her scar looked very "modern") and the surgery looked to be very successful.  The patch between the chambers looked very good and was doing its job.  The right side of her heart was not enlarged, which you might normally see, so that also was very positive news!  He did say that while the pulmonary artery was narrowed, it was not so narrow that the heart couldn't keep up.  And her was the most shocking news of all:  We have all along thought it was a given that C would have open heart surgery again as a teenager to keep up with the growth in her body.  The doctor told us that SHE MIGHT NOT EVER NEED SURGERY AT ALL.  EVER AGAIN!!!!!  

While there is no guarantee for that, we are so excited!  We have to wait and pray that her pulmonary artery grows along with her body (please pray with us!) until she is fully grown. Even then, she may only have to have the pulmonary artery stretched!  We were prepared for a full open heart surgery and valve replacements every few years!  This was such great news to us all - we are so thankful that God has blessed our daughter in this way and heard our continued prayers for good health.  We are so thankful for the orphanage director that cares so mcuh for children that he puts as many children as possible in foster homes and investigates them regularly!  We prayed that our child's needs would be met - He answered!  We are so thankful for her foster family for loving C so completely and giving her their best.  God answered our prayers that our child would be given love!

So today is a great day - a great day remembering God calling us to this child, and though afraid, Him giving us the strength to step out in faith and pursue her whatever the cost.  Today is a great day, because our daughter can lead a fairly normal life with a healthy lifestyle!!!  Today we are blessed!

We could have said no - there was A LOT of pressure from so many for us to turn away from this special little girl, but here we are! : )  So thankful! (and no counting bear sorting meltdowns tonight!)

Don't stop praying for our little Lottie Pie, though.  That artery needs to grow with her body and there are still some lab results that we are waiting for.  We are NOT afraid, but we want the very best for our  daughters who have been through too much already.  If you would, stop and pray for her at least yearly.  Her birthday is in the month of hearts and love, February.  When you see those hearts and roses, will you pray for our sweet girl?  We so appreciate your love and support!

To God be the Glory!