Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Thursday, May 15, 2014

Tuesday, May 13, 2014

Don't act stupid

After sitting in an IEP meeting yesterday and hearing all the things that M "can't" do that she actually can do, I pretty much read her the riot act last night.  I was even worried I might have been a little too harsh with her, but ya know what?  The real word IS harsh.  Not everyone is going to sit around begging you to make a better choice or reminding you 343823843 times to pay attention and do your job.  So I explained that to her.  If you act stupid, people actually do assume that you really are.  "At some point it will quit getting you attention and people will just assume you cannot do things, so they will not let you do things."  She seemed like she "got" what I was saying.  I don't sugar coat the world for her.  I don't feel she'll ever grow up to be successful if I baby her.  She's at a disadvantage to start with because people see her walk and assume right away that she is cognitively impaired and she is NOT.

So she got on the bus this morning and was all like, "Today I am going to do my work without anybody telling me a whole bunch of times!"  She came home this afternoon, "Oh mom I did my writing all by myself today and got on blue!  I wrote 'I like my dog because he is nice!' I sounded it all out myself and I even wrote my name with small letters!"  She has not been on blue even once this year, let alone for exceptional effort.  Just the fact that she knew she should be writing her name smaller, and knew that doing so indicated better effort on her part shows the higher level of thinking she does to sort out what gets her extra attention.  ARGH.  This child...  When she decides what she *does* want to do, she's gonna set the world on its head in shock.

Wednesday, May 7, 2014

Does God speak?

Sometimes I think that God uses scripture we've memorized long ago as a way to speak to us.  This morning three separate passages just popped into my head in this order.

Thy word have I hid in my heart that I might not sin against thee.

Thy word is a lamp unto my path and a light unto my feet.  Thy rod and thy staff, they comfort me.

Thou preparest a table before me in the presence of mine enemies.
My cup runneth over.
Surely goodness and mercy shall follow me all the days of my life.

Obviously you can tell I was made to memorize King James as a child!
The last time God "spoke" to me this way was during our fundraising at a very desperate moment for us.  A week later we had raised $10K.

I'm believing good things are about to happen, and for goodness sake it.is.about.time. that we got a break!  

Saturday, May 3, 2014

Our Trip to New Jersey for M's SPML Surgery

After a LOT of research, we decided to take M to New Jersey to have SPML (selective percutaneous myofascial lengthening) Surgery with Dr. Nuzzo.  I was able to send video of her walking and her PT doing ROM (range of motion) stretches with her for evaluation.  She was a great candidate so we set the date for April 29th and on April 26th, we flew to NJ!

The security (TSA) at Dulles was so annoying.  They made me take her SMO's off, take her out of her pushchair (its like a wheelchair), fold it all up and send it through the scanner, carry her through the scanner and then they swabbed me for drugs!?  WTH Dulles!

Then after walking for 30 minutes to our gate, I was told they'd oversold the plane and we couldn't get on.  M and I sat there and cried and cried and cried.  How!?  Fortunately the ticket guy must have felt sorry for us because after I refused a flight to another airport (I mean for real!?) he printed off tickets for us.  They weren't together, but the guy next to me agreed to switch and after a delay for vomit clean up from the passengers before us, we finally took off.  

My friend Lora lives in NJ.  I've known her only through the internet since she also adopted a little girl from Ukraine who has cerebral palsy like M.  We thought it would be awesome to finally meet in person and let the girls have a day to play together before M's surgery.  They picked us up at the airport on Saturday evening and we spent all day Sunday hanging out.  We arrived a few hours later than we had planned due to the turbulence and the vomit clean up, but hey we made it!  Lora and I sat up drinking wine and chatting until well past midnight.  It was great meeting someone I had an instant connection with.  It just doesn't happen often anymore because no one gets my crazy life full of bio kids and adopted kids and special needs kids.  She also has a lot of kids (5) and a mix of bios and adopted.  I sort of want her to come live next to me because we had a GREAT time together.  



M and Vi at the park.
They both LOVE swings which turned out to be only one of about a million things they have in common.

Blowing bubbles.

Waiting to see Dr. Nuzzo on Monday!

Waiting for the surgical team on Tuesday!

Practicing blowing up balloons for all the babies for the anesthesiologist.

One thing I LOVE LOVE LOVED about Overlook Hospital was that they let parents go back with the child until they are asleep.  It made a world of difference for M because she was hysterical at UVA when she woke up without me after being taken away.

Groggy after surgery, but mom found Princess Peppa Pig in the hospital pharmacy and she likes bubble gum scented masks too.

Back at our hotel a few hours after surgery.  She had zero complications.

The main reason we chose SPML over traditional lengthening.  This is the surgical site on her leg immediately after.  You won't be able to even see this in a few weeks.  No incisions! 

Doped up on Valium and some other good drugs the next morning because those legs are sore :-/

At the airport ready to fly home on Wednesday after her post-op appointment!  Just one day post op and we are outa here with zero restrictions other than keeping the casts dry.

On the plane ready to take off!

Due to the massive amounts of rain our state received, this was our road closed due to high water.
Our typically 2 hour drive from the airport took about 6.

The next day I took M for a new summer haircut!

yesterday she was jumping on the trampoline with only a dose of Ibuprofen.  

I'll do a follow up post to this one with before and after pictures and videos.  M has to wear her casts for 4 weeks and then she'll get a new pair of AFOs.  Right now she is really weak because the surgery removed the tightness she'd been used to and its like she has brand new (jelly) legs.  She is doing great though and really wants to go back to school next week!

Overall, the trip itself was a lot of work.  I was with M by myself so I had to navigate luggage and a kid in a push chair all over airports, hospitals, hotel, and Jersey.  The Grand Summit Hotel in Summit, NJ is where we stayed and thankfully they have a shuttle that has a wheelchair lift because M could NOT stand up and get into a vehicle the day after her surgery.

We ordered room service for dinner and lunch after she had surgery and while expensive, it was doable for the short time we were there.  I had a little mini-breakdown only once and it really had nothing to do with M's surgery and everything to do with school continuing to send emails demanding I meet with them on dates I could not due.to.M's.surgery!  I mean hello!  I ended up ordering a glass of wine and paying $20 for them to deliver it.  I slept exactly 2 hours that night because I was so.very.angry. and stressed.

My husband stayed home by himself with the 5 boys and put them on the bus and got them off each day.  He held down the fort and did a great job.  Its not easy to do by yourself when you are used to it, and he's not used to dinner, laundry, and school prep.  Our thoughtful neighbor delivered 2 dozen donuts one day to help make up for mommy being gone.  There were none left, so I think it helped!

Overall, we only spent Sat-Wed away and one of those days was extra because we were visiting my friend!  Dr. Nuzzo's staff was AWESOME SAUCE and Overlook Hospital is the bomb.com.  I've dealt with a lot of doctors and hospital staff.  These guys are the best.  I have nothing bad to say about them.   They were so helpful and accommodating to whatever we needed.  Dr. Nuzzo himself is kind of an eccentric guy.  However, after dealing with doctors that only view M as a number and a diagnosis, I was in love with Dr. Nuzzo.  He knew what he was talking about and he was confident in what he was doing.  He was also really, really "unprofessional" in a good way.  He smacked himself in the head with a toy hammer before even saying hello.  M thought it was hysterical so for her, it was great.  Doctors tend to freak her out by yakking about how she's from Ukraine and then talking about her and not TO HER, and then this guy just walked into the room and smacked himself in the head with a hammer.  Then he talked TO HER.

Dr. Nuzzo did alcohol blocks in M's adductors.  SPML surgery to both hamstrings and calves and an alcohol block in her right arm.  She's in rubbery casts (yes so cool!) for 3-4 weeks!
We'd totally do it again!



We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson

 

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