Our Day at the Hospital

We woke early and got Claire ready to leave.  She was a little concerned that it was still very dark outside and very, very concerned that she couldn't have breakfast.  

Each night as I'm tucking Claire into bed, she goes over what she plans to eat for breakfast in great detail.  We usually visit that conversation 2 or 3 times before she settles in and accepts her kisses and hugs. Of course, the night before surgery, I had to tell her that she could not have breakfast the next day.  Before she was even awake enough to get out of bed, she was already talking about "no breakfast."

We drove through the dark to pick up Jenny who agreed to help out at the hospital.   By the time we made it to the parking garage, the sun was up and we could see where to park and head inside.  We checked in at 6:50 a.m.

As usual, it is a hurry-up-and-wait  process.  Wait for the lady who looks over the insurance papers.  Wait for the arm band.  Go upstairs and wait in the first waiting room for a long time.  Go get vitals taken once again and receive a beautiful outfit. 

Don't you think Claire looks pretty in light blue?

 From here, we answered all the pre-op questions--you know, the ones we had to go to the hospital one day last week to answer, and go over at least three more times before getting to this step. While the nurse was typing, they realized that they forgot to put a bed in our room, so one was wheeled in.  After the questions were finished up, we got to ride the bed down to pre-op and wait some more.   Claire wasn't too thrilled with this wait.  Nobody seemed to be able to find the orders for the blood draw so it took awhile.  Lots of strangers kept coming up and talking way too fast about things Claire didn't understand.  She was just ready to get this all over with and go home.  She repeatedly reminded us that she was hungry and wanted some breakfast. 

 It was nice to have Jenny there to provide extra distraction whenever Claire was about ready to bolt.  Jenny was awesome about keeping track of the bag of clothes and supplies, too.  

There was a bit of real fear as they wheeled Claire back to the operating room  I was not allowed to stay with her until she went to sleep, or to be there when she woke.   Hospital policy isn't always the most child friendly thing.

We waved good bye and then went to the second waiting room to sit until we were called.

The doctor came out to see me after about an hour.  Everything looked pretty good. There were no cysts. The scars were not blocking the airways. There are lots of scars, but it appears that the only impact might be that the scars on her vocal chords change the tone of her voice.  He did see some irritation and swelling that appears to be caused by reflux.  He is referring us to a gastroenterologist to evaluate why this might be occuring.

A couple ounces of apple juice helped with the waking up process.   Then we were wheeled back to a room to recover.  Claire was really impatient with the whole process.  She was irritated by the blood on her hands and the various tubes. So, we spent a little time carefully cleaning her up.  Then we had a long discussion about tigers and their teeth.   Hey, at least we weren't talking about breakfast for a few minutes.  :-)

Can't I get all these "pokes" off and go get some breakfast?

We got home around 3 o'clock.  Claire settled on the couch to watch Angelina Ballerina and eat a bowl of oatmeal.     Breakfast at last!

Thanks go out  to everyone who prayed.  It is good to see a healthy trachea and esophagus and rule out one more possible problem.  It was also a blessing to be able to get the lab work for liver tests done while Claire was unaware of the process. Any time we can avoid the stress associated with "pokes" is a blessing.

I don't suppose we will ever be fully aware of the miracles God is doing on a regular basis.   I believe He is at work mending and healing and restoring things we know nothing about. He deserves more praise and glory than any of us is capable of giving.  I hope that you will take a moment as you read these results, to say thank you to the God who is taking care of our precious girl according to His awesome plan for her life.

Hospital Pokes Feel Sad

 

The surgery scheduler let us know that Claire needs to check in to the hospital tomorrow morning at 7:30.  With the time confirmed, I let Claire know that she needs to go to the hospital tomorrow.

The first words out of her mouth were,   "NO pokes?"

It was a question.  A hopeful, wishful question. But, there will be pokes and I had to tell her, and she wasn't happy.

"Pokes, sad.  Hospital, sad.  Stay home, mommy."

In case you aren't up on your Chinglish, that translates to the fact that she doesn't like having blood drawn or IV's or going to the hospital.  She wants to stay home with mommy.

I assured her that I would go to the hospital with her, and Jenny will come with us, too.   Then I did my best to explain how they will use a "bubble-fish" (Claire's name for the mask on her nebulizer) to help her feel sleepy.  She will take a little rest at the hospital. While she is sleeping, the doctor will look inside her neck with a teeny-tiny little camera.   They will do the pokes to get some blood while she is sleeping so there will be no hurt.  When she wakes up, she will find a band aid on the place where they did a poke.

She wanted to know if she would come home when she wakes up.  I waffled a little on this one.  I just don't know.  It depends on what the doctor finds, and what he decides to do.  This is an "exploratory" surgery to see what is going on in the esophagus. If there is something simple like a cyst, or minor scarring, it will be taken care of right away.  If it is minor, she comes home.  If it is just a little complicated, she may stay overnight.   If anything is more complicated, we will schedule for another day to take care of things.   So I skirted the coming home question by saying I will stay with her until the doctor says she is ready to go home.

The blood draws are for the gastroenterologist.   He needs more tests to figure out what exactly is going on with Claire's liver. We know that it is enlarged and blood tests show "abnormalities," but we don't know exactly what that means. Since her little veins have had more than their share of "pokes," they tend to yield only a tiny bit of blood before the supply "dries up."    (My apologies to any medical type folks reading.  I'm used to translating events into the simplest language, and I don't know enough about medical terms to sound educated in this area.)  Getting enough blood for tests on a regular basis has become a very frustrating experience.  I'm glad they can do this one while Claire is totally unaware.

She is just so tired of doing this medical thing.  I can't blame her.  We went through her medical records and counted the days she has spent in the hospital.  Miss Claire has been hospitalized for a total of 4 years!  That is a lot for anyone.  It is way too much for an 8 year old.

We are praying that all the doctors will be able to figure out what is going on in relation to Claire's breathing difficulties and with her liver.  We want to be able to resolve the problems so that Claire can spend some time at home learning how to be a regular little girl. One who doesn't have to worry about pokes for a good long while.  Won't you pray with us?

Claire would rather count scoops of ice cream on her giant ice cream cone, not add up doctor and hospital visits.

What A Difference Seeing Makes!

Claire has had a terrible time with coloring, cutting, or tracing.  Following a line seemed impossible,  She was also stumbling whenever the ground was uneven, and was terrified to go anywhere without bright light. It took us a bit of  time to get an appointment with  the pediatric vision specialist, but we are so glad we did.  He promised us a "new child" once she had her glasses.  I don't know if I'd go quite that far, but  I do know that she is pretty happy about her glasses, and does not want to take them off.

Clearer vision has made Claire more willing to participate in activities that she used to avoid.   

 

So many new things to see between the doctor's office and the parking lot.  Wow!  It is fun to see.

Paying the bills is quite a chore.   First you must cut up pieces of construction paper to put inside the envelope.  Then you have to put on a "stamp" and a return address label.  Writing the address is very time consuming.  Especially when you have 25 bills to pay!

You must put them in the mailbox one at a time to make sure they are just right. Claire recognizes that her writing does not look the same as other writing. When asked what the mailman would think about all her bills, she says that he will shake his head and say, "I don't know...I don't know."  Then she giggles as she envisions the puzzled mailman.

Please don't tell Claire that Daddy went outside after Claire was in bed and removed all that confusing mail.  The garbage pick-up men surely won't say a word.  ;-)  Claire can hardly wait until our next bill paying day.  I guess I should start buying envelopes in bulk.

Coloring is much more fun when you can see what you are doing.  When Daddy colors with you, it is even better. Real men color princess pictures. Yes, they do.

 Jenny-jie jie  joined us at the park one warm sunny day.  New glasses made it so much easier to judge where all the steps were.  Claire climbed on all sorts of things she had avoided before.  Of course, seeing down from the top also made it a little bit scarier.  As long as Jenny was there to set an example, though, nothing was too scary to try.

Glasses are a wonderful blessing.  Of course, Claire is not used to being able to see clearly. We know that it will take her brain time to catch up to the new things  her eyes can do.  She still operates in her mode of avoiding things where she might fail.  She would prefer to misbehave or distract rather than try something she might not do well.

Glasses haven't changed her stubbornness.  When asked to cut a curved line, she pretends not to know how to hold the scissors.  When asked to trace over an "x" with her marker, she refuses to touch the pen to the page.  Bribes don't work.  Punishment doesn't work.  The only way we have found to get Claire to do something she doesn't want to is to wait her out. All options for any other activity are removed until she decides to make a reasonable effort at the task we are asking her to do.  It can be really stressful to wait, and wait.  Earlier this week she refused for 10 hours.

Yup.  Very, very  stubborn. 

Just when doubt was about to make me tell her she didn't have to write it, she decided to cooperate. She traced a perfect "x" on her dry erase book. It took her all of 3 seconds to complete the task with excellence.  Then we celebrated!  Guess what the first thing she wanted to do the next morning was?  Now that she knows she can trace those lines, she is all about showing off her skill. 

How I pray that each time I ask her do something and she succeeds, we will build trust.  We will need lots of that to continue to help her grow and learn.

The More the Merrier

It has been a long while since I've found time to blog.  I promised myself to take time to just enjoy my new daughter for a season, without worrying about solving all the problems that keep popping up.   For the most part, I've been keeping that promise.  By the time Claire is safely tucked into her bed each night, I've usually had so much fun that I'm ready to collapse into my own bed and not try to rally my thoughts to write a somewhat coherent sentence or two.

But today, for a change, we have no visits with doctors.  It is cool and rainy, so I can justify not enforcing the afternoon outdoor exercise routine for once.  And, Claire finished up her school work and chores in quick order so that she could watch  "A is for Angelina, B is for Ballerina."  She thinks that by adding a little "I'm learning the alphabet" into her request, I will be more likely to allow her to watch. :-)  If she had her way, she would do nothing else all day.    In one way, it is a huge step.  During our first months home, her attention span wouldn't last more than a few minutes.  Now she can focus on Angelina for as many hours as she can convince me to let her stay on the couch. 

I'm really thankful for www.confessionsofahomeschooler.com for their free "B is for Ballerina" preschool study unit.  The librarian is also great about pointing out all the books with ballerina's in them.  We need all the motivators we can find.  Claire is not keen on trying to learn new things.

While she is giggling and clapping with Angelina, I can take a few minutes for some catch up.


Claire absolutely loves having her family home with her.   Christmas vacation was a delight for her.  Every day she would rejoice over setting the supper table for FIVE people.  Whenever anyone is not home for supper, she asks when they will be home over and over again.

Having Dan home from college was so much fun! Claire really wishes that Ohio wasn't so far away from Mississippi.

When Daddy and brothers join in, the music is the best.

Daddy brought a "flower present" for Claire.  She was delighted.  

Ben is always good for a fuzzy hug even if he is really busy with his last year of Law School and working at a local law firm.  

It was really sad to see everyone go back to work or school and leave us with just TWO people home for most of every day. When Daddy or Ben has to work late, supper time isn't nearly as much fun.
In fact, we would get really depressed over the quiet around here if it weren't for one very exciting fact.

There is a little boy in China running around showing off a picture of his new family.  

It is a bit of a shock, so you can't expect him to look too excited all at once. It is a very big idea to process.

Do you think this looks like a good idea?

What do you guys think?  Does this look like a good family for me?

Oh my goodness!  It is Claire. 

Claire is very excited.  She really covets the role of "jie jie" even though being the "mei mei" has lots of perks.
Every night, she points out which chair will be for her "di di" and wants to know when we can have SIX people at our table. 

Whenever we are sitting at the hospital waiting for another test or to see the next specialist, she keeps busy by making a list of things we need to get ready.  She wants us to hurry and buy socks and underwear, and a pillow and a special blanket.  She wants a toothbrush and a towel in the bathroom right now.  With each new stack of paperwork that we send off, she sings her "Hurry up, China" song...then sighs, "wait a minute, wait a minute."

 I tend to sigh right along with her.   Having already met this precious little guy, played with him, and held him in my arms while we were in China to pick up Claire, I'm finding the wait feels much harder. Perhaps we will have another lazy afternoon soon, and I can share my perspective on adding to our family so soon.

For now, I need to go pry someone off the couch with my standard, "No more, too much TV."

Amazing Nannies and Claire's Hair

There are so many ways that Claire's nanny's poured love into her life. They are truly amazing. But, this week, I am simply astounded by the fact that they let her hair grow long. 

Claire has very limited self-care skills for an 8 year old. 

She can  dress herself  IF I lay the clothes out in a particular configuration and there are no buttons, zippers, or snaps.

She can brush her teeth IF I put the toothpaste on the brush--and then only the two front ones and the lower left side.   She can't figure out how to turn the brush to get at any of the other teeth.  She mostly just sucks on the toothbrush.

She is making progress in potty training.  She recognizes her need and makes it to the bathroom in time.  She can wipe after urination--except when she gets in a rush and wipes before she stops wetting.  But, she rarely hops off the pot while still going.  I haven't had to mop up puddles for awhile. Hurray!
Frequent loose bowel movements throughout the day still require intervention from an adult to avoid a mess.

She can wash her hands all by herself.  Water, soap, and dry! 

Brushing her hair is still completely out of the question.  When she tries, the brush and comb just end up in a total tangle.  And her sense of style can be pretty...ahh...interesting.

Washing hair is a real pain.  And it must be done daily.
She has large patches of oily, flaky skin that piles up and fills her hair with  sticky "snow" that won't brush out.  She has alopecia areata.  That's an immune disease where the body attacks the hair follicles and makes the hair fall out in circles.  The medicine for it also leaves her hair goopy.

We have given up washing in the bath.  She hates water on her face and struggles to tip her head up extending her neck. 

So, each day, she climbs the stepladder and gets on the kitchen counter.  She lays down while I wash her hair with the sprayer in the kitchen sink. Then we dry, comb, and style.  It takes nearly an hour.

I admit that there are days when I'd like to make her cut it off.  She doesn't hold  still for combing or styling and is very particular about what type of ponytail she will wear. 

Just a tiny trim to remove the split ends.

But, her patient nannies, who let her grow it long and kept it beautiful, inspire me to keep on taking care of Claire's long hair and working to style it so the bald patches aren't visible. 

So beautiful.

She loves on loose ponytail with lots of clips to hold all the stray hairs in place.

While I surely  hope she will learn to do her own hair someday soon, I am also thankful for the hours we spend doing hair.  I couldn't ask for a better bonding opportunity. 

Enjoying Today

We worry about what a child will become tomorrow,

yet we forget that he is someone today. 

~Stacia Tauscher

These last weeks  and months have been filled with all sorts of medical and psychological evaluations.  Lots of the information is not as positive as I could wish.  Many more questions have been raised, and we wait to be able to get in for additional testing that will help us find the answers.

It's easy for me to worry about tomorrow.  Health, and education, and behavior, and attachment all become areas of stress that threaten to make me forget to enjoy the wonderful moments of each day.

So, for December, I am challenging myself to put aside my fears about visual perception, or liver function, or bonding, and just enjoy as many moments with Claire as I possibly can.

So far, I'm surprising myself by finding that there are so many delightful moments that I barely have time to capture any to share.  But, here are a few that have been accumulating on my camera these last few days.

I'm very "big girl" and can put lights on the top!

Don't you think I'm making this tree beautiful?

Latkes with apple sauce--keep them coming.  They are "dee li shush."

Spin the dreidel and get chocolate money to eat.  I'm thinking this is a good tradition.

Claire couldn't have our mailbox be plain when so many in the neighborhood were decorated.  She is very proud of her decorated mailbox.

Gingerbread cookies--sort of like play doh.

Making special muffins for Daddy to take to the office for their special holiday breakfast.

Practicing counting to ten and getting the numbers in order.

Making bead candy canes is hard work.

Proud of my good job.

Green snickerdoodles at Ben's request.

Making chocolate crinkles is messy.

A great time at the Pinelake Christmas party for people with special needs.

A Day for Hatred

My mother heart aches for the mom's who won't see their precious children again.  I am so sorry.  So sad.

Yet there is a greater ache for those children who will also die this year without ever knowing the love of a mother. Every day little children die.  Alone.  Without enough nutritious food.  Without sufficient medical care.  Without ever knowing how special and wonderful they are. Without anyone to mourn their deaths.

Both situations are caused by sin.

This blog explains better than I possibly could why this is a day to hate the sin that destroys.  It is worth a moment to read.

/http://thegospelcoalition.org/blogs/tgc/2012/12/14/a-day-for-hatred/

Then it is worth the time to examine ourselves and determine how we can love more deeply, with less selfishness in a world awash with brokenness.

Lord Jesus, help us be your hands and feet to those who need your love.
Amen