Saturday, July 28, 2012

"Thank you mommy"

Getting Ember ready for bed every night is no quick affair. In addition to the usual diaper change, pj-putting-on, teeth brushing I also put splints on either her wrists or her elbows. I try and alternate. She doesn't love them because they stretch her while she sleeps but she accepts them. Now that her hip surgery is over I have to add another bit to our routine. She gets knee immobilizers put on and then an ace bandage wrapped around mid thigh to knees like a mermaid. This is to keep her hips stretching while she sleeps. She is quite the bundle after all is said and done. So last night I was going through our routine and was just finishing wrapping up her legs. As I finished this little pixie voice says to me "thank you mommy." Be still my heart. I wanted to cry. Ember is an amazing little girl. The rest of our trip to/from Philly went well. Ember stayed comfortable during the trip and she is pretty much back to normal. We will need to return to Shriner's in about 4 wks. for a follow-up. Here are some pictures from Em's surgery.

After Ember was discharged she fell asleep on the floor and Sienna surrounded her with all their toys.

Saturday, July 21, 2012

update

I am going to make this a quick update as my internet access is not great. I have pictures but no way to upload them until we get home. Surgery went well. The first 24 hrs. post surgery were unpleasant. She was an angry and sore girl. She is back to herself now. She is to have her legs wrapped mermaid style for at least the next month. She also needed to be casted for a new prosthetic as well as leg braces but she has been too swollen. We will head back to the hospital Monday morning for that before leaving for home. Thank you for the prayers. We appreciate them.

Thursday, July 19, 2012

surgery day

Well, we made it to Philadelphia just fine. The hospital called and wants us there at 6:30. It is 4:00 now and I've been awake for hours. I have such a headache. I will be glad to have today behind me. I hope Ember doesn't have much discomfort. She is terrified of drs. Cant say I blame her. When we first adopted Ember she needed to have bloodwork done. I took her to the local hospital where after about 6 tries to poke her and find a vein they quit. We then went downtown to a bigger hospital where again they tried too many times to draw blood with no luck. We set up an appt to have Ember sedated at the children's hospital where they would then draw her blood. It took 2 hrs. for them to get enough blood for the tests. They were unable to use her arms or ankle area and were able to just get enough from her groin before they lost that vein. Oh I dread today. I hope they can find a vein. The anethesiologist agreed to sedate her first before inserting the iv. My poor girl. Please pray for no pain and for her comfort both physical and emotional. She just gets so scared around nurses and drs. and pretty much anyone who wants to look at her.

Friday, July 13, 2012

Happy Birthday sweet Sienna

Tomorrow - July 14 - my precious Sienna turns 3.  Still my baby, but not a baby anymore ya know?  3 years ago tomorrow morning was just another day.  I had a dr. visit scheduled but my due date was still a couple weeks away.  When I got tot he dr. I was told to walk right on over to the hospital next door and check in.  I had no amniotic fluid left and so labor would need to be induced. 
I was so nervous and excited.  I would be meeting my daughter soon!   There was so much I didn't know at that point.  So much I would learn. 
My labor was fairly easy and uneventful.  I could hardly believe I had a daughter.  She was so small, so beautiful.  My mom brought Sienna's 3 brothers to meet their new sister.  During that 1st visit was when my life turned upside down.  The pediatrician came.  He gave us the news.  Right there in front of my mom and my boys.  I'll never forget that feeling and to be completely honest those memories are still raw and painful.  Things went downhill from there.  Sienna had to be transported to the Children's Hospital by ambulance as she was having trouble keeping her oxygen up and maintaining her temperature.  They took my baby away.  Thad followed along to be with his new daughter.  I was alone.  I have never felt more alone.  More sad.  Crushed.  Devastated. 
I am ashamed of some of the things that ran through my mind those early weeks.  Personal, painful thoughts.  I also wanted to change her name.  "Sienna Hope" was the name we had picked out for our little girl.  The little girl of my dreams.  The Sienna that was born was not the little girl in my dreams.  Yes, I thought she needed a different name.  How foolish I was. 
3 years ago one of the best things in the world happened to me.  I had been given a most precious gift - although I didn't realize it for some time.  Sienna IS the daughter of my dreams.  My sadness over her diagnosis of down syndrome has changed lots.  Do I still get sad?  YES.  It is hard at times to see children similar in age - or worse - younger - doing things she isn't.  But you know what?  I have learned it is ok.  So what if she isn't where other children are?  I am immensely proud of her and her accomplishments.  My biggest sadness comes from the thoughts that other people will not give her a chance, will not appreciate the beautiful person she is.  I worry others won't really "see" her, they'll just see her disability.  Sienna is amazing.  I am so in awe of her.  She is just so full of sunshine and joy and stubbornness, and love.  Pure simple love.  She loves with her entire heart and soul.  I am sad that society won't see her that way.   I pray that people give her every chance she deserves.  She has something great to teach.  I am learning every day.
Happy Birthday sweet Sienna.  I am so thankful that you are my daughter.  My life is better because you are in it.
 

Tuesday, July 10, 2012

Is she able to stand on her own yet?

This morning I had breakfast with someone who asked me this question.  "Is she able to stand yet on her own?"  This question has been asked of me by her for months.  Every time my answer is the same.  "Not yet.  But she is getting stronger.  She'll get there, it just may take a while."  Today for the first time I am actually wondering if Ember will ever be able to walk on her own.  Because I am around her every day, and I take her to every therapy appointment I don't see the progress.  I know she is able to bear weight, and I know she'll be able to balance in a standing position.  But taking steps I'm just not sure of.  Certainly there are worse things than not walking on your own but I sure want that for her. 
It has been a bit of a crazy few weeks.  A little over a week ago I ended up in the emergency room.  For 24 hrs. I had the worst heartburn.  I was nauseous and could not get comfortable.  Well, it turns out my gall bladder is full of stones.  Large and small.  So, I need surgery.  I don't have time for that! 
Next week we will head to Philadelphia where Ember will have her hip surgery on Thurs.  Making decisions for her to have or not have surgery isn't easy.  I hope we are doing right by her. 
After we get home from Philly I will have my turn and have my gall bladder out on Aug. 2.  No one else in the family is allowed to have surgery for a while! 
I will leave you with a collage of Ember.  When we first met her in Ukraine she would try to get us to mimic her faces.  It was sort of coping mechanism for her I think.  A technique to sort of entertain and get attention.  She still loves to imitate faces and I must say she does quite well!  Monkey see, monkey do...