Wednesday, January 25, 2012

Cleft Palate repair

We met with the Shriners today.  It was overwhelming in a way.  We met her case manager, the ENT, the surgeon, a speech pathologist, a geneticist, their residents (just like "Grey's Anatomy"), and communication specialist that helps prepare the child for surgery.  

Sofie was prodded and poked (no shots).  She opened her mouth wide for the many flashlights stuck into it.  She sang, she spoke, she danced, she laughed, she played, and she cried only a little.  I was very proud at how well behaved she was considering we were there for about 4 hours.  She is a great little girl.

The good news is that the speech pathologist thought she was making good progress with her sounds and explained why her "b's, d's, f's, k's, g's, p's, t's, etc." weren't coming out.  She also helped prioritize Sofie's surgery to ASAP so that she doesn't start any other bad habits.  Last, she will work with the Early Childhood Intervention team on the speech therapy strategy.  Very cool.   

The bad news is that her cleft palate is way worse than I thought it was.  I saw only the small hole in her mouth, and I thought she wouldn't require that much work.  It turns out that the muscles in the back of her mouth are formed incorrectly, and although the hole is small in her mouth, since the muscles are formed the way they are, it is like the entire roof of her mouth is missing.  The surgery plan is to reconfigure all the muscles in her mouth to be structured properly.  Then, if everything goes well, the next surgery will be when she is 8-9 and that will fill in the hole in her mouth.  Then, when she is 16, we will look at fixing the cosmetic stuff on her face (droopy nose).  Apparently, if they go in and try to fix the nose now, it will likely screw up the development of her nose on her face in the future.  So we have to wait.

I am heart broken that she might have to be subjected to the taunts and teasing about how her face looks. I was teased a lot when I was in elementary school & junior high about a mole above my lip.  As I have gotten older, it faded, but at the time, it definitely affected my self esteem.  It was hard.  She is a beautiful little girl, and I don't want her to be broken by this experience.  Children can be cruel.

Anyway, I am feeling confident about the medical team.  I am extremely grateful that the Shriners accepted our case.  I am hoping we will have completed the surgery by mid March.  Since we are local, the Shriners are going to call us if there is a last minute cancellation due to illness so we could get it done in February.  

After the surgery, Sofie's arms will be splinted for at least 2 weeks so she can't put her hands in her mouth.  I am not looking forward to that.  It will be an extremely frustrating time for awhile for sure.

That's our news for the day.  We meeting with the Early Childhood Intervention team next week to start speech therapy.  Hopefully that will go well too. 

Thursday, January 19, 2012

2 month mark

Her Dad pointed out to me the other night that this weeks marks is the 2 month anniversary of getting Sofie.  Her Dad was talking about it on the 17th in the context of ... "We had no idea what was in store for us when we got on the plane to China"...  He has been reminiscing about what life used to be like...
...I used to be able to golf whenever I wanted to...
   ... I used to be able to go out to dinner when/where I wanted to...
      ... We used to be able to go to non-kid friendly places...
        ...  I used to be able to sleep in until I wanted to...
           ... I used to be able to sleep 7-8 hours in a row... LOL.

I do miss going out for Tex Mex at my favorite restaurant (not really kid friendly), but Sofie is everything I expected plus more (most of the time, except for when she is naughty and having day-long temper tantrums - these are epic events, and no one can prepare for them mentally ahead of time. Wow.).

I also miss going on dates with Dad. We have only been out once in 2 months due to sickness, and we need to prioritize this more.  Babysitters are welcome to contact us any time with interest.  *hint hint hint*

I want to commemorate the 2 month anniversary of our family day on the 21st by looking at it from a high level on where we are  in such a short period of time.  Sure, 2 months sounds short to the average layman, but 2 months seems like it has been an eternity.

  • We got Sofie!  This was HUGE!  It was 2.5 years of adoption process coming to fruition.
  • We bonded with Sofie.  The social worker did her first evaluation of us last week, and she was really pleased with Sofie's progress.  She called Sofie "a doll", "a good girl", "very sweet", and "obviously happy".  This is HUGE.  I am relieved that Sofie has bonded with both of us. She is working on becoming a Daddy's girl really quickly.
  • She bonded with the cats (major win because she was TERRIFIED of them).
  • She is thriving & growing!  She has grown an INCH in 2 months.
  • She occasionally sleeps through the night & sleeps in her own bed every night!  (Very exciting when sleeping through the night happens!  She did it 2 nights in a row this week!!!)
  • We have started her immunizations (there are lots).  
  • We are meeting with her cleft palate team next week to put in a plan of action for her.
  • We made an appointment with the Early Childhood Intervention team to get her started on speech therapy in February.  This will be great because she will start learning to use consonants.  
  • She is a natural mimic in both physical & speech aspects.  It is good we are keeping her active outside, and she is constantly learning new things (like blowing bubbles & playing a recorder).  She can say lots of English words.  She also is a confident bull-shitter ("Yes Mama, I understand" nods when she is asked if she understands).  I hoped she would be fluent by 2 months, but that was unrealistic.  It takes a normal baby 15-18 months to start talking.  Sofie is doing pretty well.
  • She has met some of her extended family & bonded with them very quickly.  She remembers them & talks about them all the time.  There is a plan for her to meet almost everyone which is also significant since we are talking about 2 continents.
  • Oh, and we discovered she likes a lot of things that Dad and I like such as music, singing, dancing, walking, soccer & the beach.  We have rediscovered old loves like bubbles, running (ok, chasing after her, but it is running after all), playing tag, the zoo, tickling, science museums, and kites.  I also get to help her play princess dress-up (love, love, love) AND play with baby dolls.  It is also an excuse to sing weird, random songs at the top of my lungs - girl scout songs if you must know - and pretend to be a dog or a cat... or a tickle monster and be the coolest mom in the world.
So, on the eve of our 2-month anniversary, I say... We have come a long way, Baby!

Tuesday, January 10, 2012

Google Translate - Mommy's new best friend

So a few days ago, I was feeling blue and like we had a major communication issue in the house.

Every time I left (to go check the mail, get something in the garage, run an errand, etc.), Sofie exhibited behavior of extreme sadness, abandonment, and loss.  She was crying all the time.  We weren't sleeping. We were all crazy.

At the end of my rope, I resorted to Google Translate to try to bridge the gap.  I came to this realization at 4:30 in the morning one of the nights Sofie wouldn't sleep.  It sounded really logical to me to get the application to talk to her.  I knew that the "translator" was hit or miss.  When you compare the English to Norwegian translation, it is so/so, but something is better than nothing so I gave it a go.  It didn't matter that she didn't speak Mandarin (but some other dialect with another name...).  I was sure that this would help.

Before using the application, I thought about a few topics to cover.  I wanted to:
Explain that we thought she was doing a great job trying to learn English.
Explain that I was sorry we didn't speak Chinese but that things would get better.
Reassure her that I was going out, I was running errands & promised to come back.
Explain that we were her forever family - that I would be her mommy for the rest of her life (whether she likes it or not when she becomes a tween), that I would always come back, and that we both loved her very much.

I added in a request that she not to cry unless she was really hurt because we were worried about her.  I explained that her new name was Sofie. I am sure I am forgetting some of the messages we shared.  I would translate a thought, say it in English, and then let Google Translate say it in Chinese about 2-5 times.  Sometimes Sofie repeated the words in Chinese. Sometimes she smiled.  She gave me a hug afterwards.

Her behavior did change immediately.  I still can't go to the bathroom with the door locked (wailing like cats that want to come in too), but I went to an appointment later that day and she kissed me goodbye & didn't cry.  It was amazing.  For the most part, when I leave the house, she is much more comfortable these days.  I think she must have understood at least some of the concepts I wanted to convey to her.

She is calling herself Sofie in pictures when we ask her who is in them. She also still cries with temper tantrums when something happens that she doesn't expect, but it was an amazing intervention.

Thank you Google Translate.

Saturday, January 7, 2012

Friends and Family

I wanted to thank everyone for their help and support. It means a lot to me to know that I am not alone in my quest.

By posting about my feelings the other day, it allowed me to release them and move on. Things are much better. I got some sleep. Sofie continues to develop and grow.

We had a great night last night with friends and family. Sofie is an amazing dancer and I am waiting for posts to YouTube to show up of our amazing girl. She can really get down and boogie!

Hope you are having a good one.

Wednesday, January 4, 2012

Perception vs Reality

I have been ruminating about things to write about for the last week.

It has been awhile because we are working on getting into our routine, Christmas came, my parents visited, and we are trying to get into the routine again.  I also wanted to stay upbeat.  I am struggling for that at the moment.

There were many expectations for this child.  At least 13 years worth if I am counting married years or about 20 years if we are talking about how long I have been thinking about having a child.  It is awfully hard for our child to live up to those expectations.

Everyone tells me how amazed they are at the transition with Sofie, how happy she seems, how they can't believe how fast she is learning English, etc. etc. etc.  I don't know if they are trying to build me up or if they are real comments.  For every step forward, there are 20 steps back.  She still doesn't know that her name is Sofie after having us call her that for 7 weeks.

I am exhausted.  It feels like most days are crawling along, and all I deal with are tantrums and crying.  She still isn't sleeping through the night most nights, and I am not getting a lot of sleep.  The hubby can sleep through anything, and I am doing the majority of the night time, morning, and evening support.

She has really attached to her Dad but not to the point where I can lock the door when I go to the bathroom, leave the house without her, or run errands without her.  I am shackled to a 2 year old with separation anxiety and abandonment issues.  No wonder.  Her foster parents did not prepare her in any way for this transition, and it has been unbelievably difficult for this adored child to have her life turned upside down.

The weight feels heavy.

I asked for this.  I wanted it.  I want it.

I had an all time low this week and became a "What not to wear" wannabe.  I was wearing an oversized, old, grey cubs t-shirt (with a hole in the armpit; didn't realize it had a hole until her Dad pointed it out later), jeans, old tennies, a very messy pony tail, no makeup, and an old windbreaker.  Her Dad told me that I resembled a homeless person and he would have given me a dollar.  I hadn't really combed my hair that day, and we left the house to go shopping because I have work-wear and grunge-wear and not a lot in between.

Since that reality check, I have been trying to make the effort to go through the motions and get dressed, shower, put on make up, and be ready to leave the house.  The honest truth is that I don't have time to leave the house, check my email, update facebook, exercise, read a book, go for a walk, etc.  

I need a break or a babysitter or something.  Maybe an uninterrupted night's sleep.

My reality is not what I expected.  I thought it would be easier.  I thought she would be faster at speaking English.  I thought she would accept 2 caregivers.  I thought we would take more turns and I would be allowed to shower in peace.  I thought she would sleep through the night.  I imagined going to the zoo, the beach, the park, shopping, etc every day.  Some days it is an achievement to get her dressed.

I think most parents experience this but don't articulate it.  Maybe it is easier for them because their children speak some of the language.  I don't know.

The good news: Sofie is thriving; she grew and inch and gained 3.5 pounds.  Her hair continues to grow.    Her hearing was checked, and it looks like she has good hearing.  We have an appt with the Shriners on the 25th to discuss the cleft palate repair plan.  Things are moving.

I am treading water this week.  Maybe next week will be better.