Thursday, December 8, 2011

Happy Birthday sweet baby!

Today is Ember's 2nd birthday! She had no clue :) I'm so grateful that she is home where she belongs. I had to wonder though how her birth mother felt today. Was she sad? Does she wonder where her daughter is? How she is doing? Maybe she doesn't want to remember. I am so proud to be Ember's mom and so happy she won't have another birthday pass without her family.
I'm a lucky momma!



Sunday, November 13, 2011

True Beauty

Beautiful both on the inside and the outside. I love these girls so much!




Tuesday, October 25, 2011

Another Philly trip down

Ember had a real quick trip to Philly for her initial fitting for a prosthetic foot. This is how Ember feels about drs. these days!

However, fortunately for her there was no pain this visit. I hope that getting this prosthetic will help Ember start the road to standing up and maybe walking. Our next visit on Nov. 7 will be a big one. She meets with the surgeon for her upper extremities, the surgeon for her lower extremities and she will get to take home her new foot! It will be interesting to hear what the next course of action will be for Ember's treatment. We are also seeing a hand surgeon here locally and getting their opinion on treatment. I can see having to make some decisions in the near future about which course to take, what is best for Ember, what is best for our family, finances, etc. Traveling to Philly is not ideal. It is by no means cheap or convenient. But we have to balance what gives Ember the best outcome. For others who are in same position - how do you decide? How do you manage?
Here are some pictures of Ember's prosthetic fitting.

Friday, September 23, 2011

What to write?


I admit I am not a blogger. I am not into journaling and I tend to be private. Not to mention life is so busy...But I have been asked to update so I will. How much do I share? Do I "bare all?" Do I just gloss over our life and paint the rosy picture? There are people who read this that I would prefer just think everything is perfect. That there is no stress, that I can handle it all. I don't want people to know I struggle. Truthfully the picture is truly quite rosy. Ember is a joy and she is so loved by everyone. She fits in so well and just is blossoming nicely. What a huge personality in a small, mighty package!
We returned to Philly not too long ago and had her cast removed. She was fitted for an AFO brace to help her foot not regress. She was also casted on her left foot so they can make her a prosthetic. We are supposed to return in a couple more weeks for an initial fitting, then again for a final fit at which time we meet with both surgeons for her arms and legs. The next treatment plan will then be discussed. For now, here at home I am still trying to get her into therapy at a local rehab hospital. It is slow going. We also got a 2nd opinion on her at that same hospital so we could compare treatment plans both locally and in Philly.


Here is where I start worrying. What is best for her? What is best for the family? I'll be honest, after the adoption there is little extra money for travel to Philly. We have been lucky so far in getting help with airfare and this last trip we were able to stay at the Ronald McDonald House. But, we still needed a hotel for a night, transportation to/from airport and hotel, eating out. Then there is the problem of who is going to watch the other kids. I admit that right now I am overwhelmed with worry about money. But, Philly is "the place" to go. They have the most experience with arthrogryposis. They see many kids a day similar to Ember whereas the local drs. see a handful like her ever. I have heard from another local family with a child with arthro and their experience locally was not good. They ended up going to Philly as well.
Ember is at a hard age for her. She is wanting so badly to be mobile. She watches Sienna play and she doesn't want to miss out. Her body just won't work. She can't grasp toys or pick things up. She can't push up on her arms to crawl, she can't grip a crayon, feed herself, rub her own face. She wants to so bad and can't understand why she can't. Now, I know she will find a way. Her way. But how do you tell her that? She doesn't understand yet. She loves to cuddle dolls and stuffed animals. LOVES IT. But she can't. I sit with her and wrap her arms around a "baby" and she just melts into it. She gets the most pleasant grin on her face and she will snuggle in and give it kisses. As soon as I let go of her, her arms drop to her side and the toy falls. It is for THAT reason that I will do my best to see to it that she sees the best dr. and has the best chance to gain any use of her arms and hands.

With all that is going in with Ember I have been feeling guilty about my other kids. The girls take a big amount of time/energy and sometimes I want to be able to always give each one all my time and attention. The boys are amazing with the girls and clearly the girls love their brothers. It is hard to balance sometimes all their needs and also their wants. My head knows that they are fine and that they get plenty but my heart still feels bad at times. I have also slacked on Sienna and some of her needs. I need to arrange an evaluation for her for oral motor stuff. She is weak in her jaw, has a strong tongue thrust, and I don't want her speech to be negatively affected any more that it already will be. I need to also set up follow up with her cardio - I am a couple months behind on that.
When Sienna was first born and I was struggling with my feelings and emotions about her diagnosis of down syndrome I quit reading books at night for pleasure, I didn't return phone calls, I didn't want to socialize much. It was pretty much "cope" mode. In some ways I am there again. Not in a depressed way as much as overwhelmed. I feel like I have the weight of the world right now. Finances are not good at the moment, arranging Ember's appts, guilt over the other kids...I am starting to just "cope". I don't want to answer the phone. I don't want to answer questions on how Ember is doing, what is next for her, I am so tired. And irritable. One thing I know for sure - it is hard to hear people say "I could never do what you're doing.." or "I don't know how you do it.." or "bless your heart for doing this.." First, I am certainly no super person. If I can do this, anyone can. But even more so - does it look so bad from the outside that you think you couldn't do it? Are my girls looked at as such a huge burden that you wouldn't want them? Do you even know what you're missing? Do you realize it hurts me to think that people view my kids as a burden or someone that they wouldn't want to care for? Sigh. I am so proud of my kids - all of them. They are all as God intended them to be. Yes, I am tired. Yes, I am broke. Yes, I am stressed out, and frazzled, and busy. But I am full. I couldn't love these kids more. Sienna is the most amazing gentle loving individual. She is full of compassion, and she is smart. Yes - she has down syndrome and she is smart. She can't talk yet. She may never - but she signs with the best of them. Most people only see her babble and gesture with her arms. They see a 2 yr. old behaving like a 1 yr. old. They don't see that those gestures are signs. She is talking. The hardest part of Sienna having DS is knowing other people will not "see" her. They will see what is on the outside and they'll see the stereotypes of down syndrome that they've heard. They won't see the amazing person God created. They won't see her though my eyes. I wish the world could.
And Ember, oh the determination she has. She tries so hard to do things. Always. Yet she wakes every morning with a smile. She is always happy to start her day. Will she be given the chance in life she deserves? Will people see beyond the handicap?


Worth every bit!

Thursday, August 11, 2011

Ember visits Philadelphia

This past Monday Ember had her first visit to Shriner's Hospital for Children in Philadelphia. It was a long, informative day. The day began with an introductory visit with the lower extremity specialist Dr. van Bosse. He measured each angle of mobility in her legs and hips. For now it seems we will leave her knees alone. Her right knee has a fair amount of active bend to it but her left has very little. It is very tight. He sent us for x-rays of her hips as well as what exists of her left foot area.
After x-rays we met with an upper extremity specialist. This was disappointing in that first, it was not the Dr. that we were scheduled to see. I had requested another surgeon at the time of scheduling but apparently he was out of town. The second reason is that this Dr. didn't even touch Ember. He asked questions, watched her sit in her stroller, and actually seemed more interested in her missing foot. He said our first focus should be her elbows and trying to gain as much range of motion as possible. He says we should leave her thumbs in her palm so she has a grip and her wrists can be pushed into neutral. The hope is with therapy that her fingers too will loosen and gain some movement. Still, he didn't feel her arms, shoulders, hands, nothing.
After that meeting we met back with Dr. van Bosse who said for now her hips look ok. They may need surgical correction but right now we need to get her on her feet. We talked about what he will do to get her left leg ready for a prosthesis - it will need a little surgery to reshape the bottom. Then, he performed an Achilles tenectomy. With children Ember's age he usually performs this in the operating room but because of Ember's difficulty finding veins he opted for local anesthetic. Basically what this procedure does is to nick the Achilles tendon so he can flex her club foot to make it flat. Then he casts her leg from toe to groin so the foot will hopefully heal flat. She is to go back in 5 weeks for cast removal and if the foot looks ok she will be getting a brace to wear 24 hrs/day.
She has not had the best time adjusting to the cast - and I can't say I blame her. During the day she is now fine and rolls around like before. Night time is no fun. She cries - no screams. Off and on all night. And it is a mad cry. She now sleeps in a pack n play next to my side of the bed. She wakes off and on all night and cries hard. She is getting used to us being at her beck and call! Oh how I miss getting a full, uninterrupted nights sleep. Somehow I think those nights are a thing of the past for a while.
Another thing we did at Shriner's was meet with an OT who fitted Ember with splints to wear on her wrists at night. These splints will push her wrist toward neutral and start working her fingers out of extension. She is to wear them every night and as she grows and hopefully as she gains flexibility the splints will be modified to continue to improve her range of motion.
Of course once I get home I think of a hundred questions I wish I would have asked! We are looking at heading back around Sept. 12. I better start making my list of questions now!



Sunday, July 31, 2011

Ember update

Ember is doing very well. She is happy and enjoying any attention she gets - except from Sienna - she is still unsure of her motives! Ember has an appointment on Monday Aug. 8 at Shriner's Children's Hospital in Philadelphia. From what I hear that is THE place to take her for arthrogryposis. I am looking forward to hearing what they say about her and future treatments. She wants so badly to be able to do the things Sienna does. It is sad to see her frustrated because she can't make her arms work the way she wants. We have been trying to draw blood from her for various tests since we don't have any health history on her. I took her to 2 different hospital labs last week and after being poked countless times and looked at by "so and so who can find ANY vein.." we are headed to the Children's hospital in the morning. She will be anaesthetised and they will use an ultrasound to help find a vein if needed. She has NO visible veins - common with her condition. Poor girl. I know tomorrow will not be a good day for her. Plus she can not have food after midnight and I know she'll not be happy about that fact in the morning. I have attached a couple of videos - this first one shows how Ember plays - if you can't use your hands to play, you use your face! She pushes toys around with her face, turns book pages with her face, points to what she wants with her nose, etc. Where there is a will, there's a way.



Wednesday, July 20, 2011

a brief detour from Ember - for a public service announcement :)


This is my precious Sienna. Sienna has down syndrome.

She just celebrated her 2nd birthday last week. She is amazing and I am immensely proud of her and so grateful to be her mother.

I can not imagine my world without her. She is funny, smart, loving, naughty, deserving of love. She has so much to offer me, our family, our friends, our society in general.

See this boy?

This precious soul also has down syndrome. He is wasting away in an adult mental institution because his country (same as where Ember was born) does not see the value of individuals with down syndrome. This picture of him was taken very recently.

See this precious girl?

She also has down syndrome. She is also an orphan who can be adopted. This picture was taken while she was still at her baby house. Isn't she cute?

See this precious soul?

That is the same little girl as above. This picture was taken only a few weeks after poor Teri Lynn was transferred to an adult mental institution. See the worry in her eyes? How terrified she must be. It is heartbreaking. I look at Sienna and try and picture her being treated that way. This little girl needs a family to step up and rescue her. Adopt her. Take her home and hold her tight. Take a minute to pray that a family finds her and saves her. She already has a large grant to help financially cover the costs of her adoption.
More information can be found HERE.

Wednesday, July 6, 2011

July 4

I love the 4th of July. I love my country and the freedoms I have. I love knowing that one of America's newest citizens is loved, wanted, and happy. Routines are starting to be established and everyone seems to be adjusting. Ember is doing well. Her resp. infection is all cleared up, her application to Shriner's hospital has been accepted, she is eating well - albeit still mostly baby food, oatmeal, and soup. She is a huge personality in a small package. This girl can charm the pants off anyone if she wants. I think because she can't use her arms, hands, etc. that she relies on her facial expressions and personality. She is full of it!







Monday, June 27, 2011

Home


How sweet it is to be home! Lets see, in my failure to keep this blog updated I have several days to catch everyone up on. Our flights for home began on Wed. June 22 at the early hour of 3:30 am. The flight from Kiev to Munich was uneventful. We did not have seats on our flight from Munich to Chicago so once landing there we set about to getting seats. Luckily we were able to get 3 seats together. However, they were the middle 3 of the center row of 5. 9 1/2 hrs. stuck in the middle. I can't complain one bit about Ember as a traveler. She had her moments of fits and tantrums but gosh, I don't blame her one bit! Customs was a breeze in Chicago but as we were getting our luggage ready for the last leg to MI we were informed we wouldn't make our flight and the earliest they could get us out would be the next morning! That didn't go over so well! I asked if we could try and she said go for it but that our luggage surely wouldn't make it. We took off running. Then we had to wait to get through security again, then more running. As we got to the gate the door was still open so we were able to get on! Phew. It was so wonderful to see everyone at the airport waiting for us.
Since being home we have seen great changed in Ember. On Thurs. she went right to the dr. because she has a terrible cough and ear infection. She sleeps fine at night but she will only eat oatmeal yet for us. Any chunky texture comes right out - or more likely she won't even try it. The first few days she cried all the time when awake. Now she is a delight. She wakes up happy and goes to bed happy. She loves being out in the stroller. LOVES IT! Funny story - so I have a new side by side double stroller for the girls. We took the kids to the store and were browsing the isles when we heard Ember fussing a bit. We glanced down and noticed that Sienna had taken Ember's leg - the one missing the foot - and was happily sucking on poor Ember's little stub of a foot! Oh gosh it gave us such a laugh. Sienna was relentless though and despite our efforts kept at it so we had to switch sides so Sienna can't reach that leg.
It is hard work having Ember here. I am tired. It is worth it. She is a gem and we are only starting to see what she is about.

Tuesday, June 21, 2011

Oh my!

I am embarrassed to see that I haven't posted in so many days! Yikes. Lets see, so we took the train to Kiev on Sat. night and got here Sun. morning. The train ride was a rough one for Ember and she cried much of the way. That was sort of the beginning of her coming to terms with her new reality. Since then she won't eat except maybe a spoonful or 2 of oatmeal. I've not given her any American food so I think she's just to sad and scared. She will drink at least. She also has run a fever for a couple days and today (Tues.) is the first day fever free. When we are in the apartment she shuts down completely. She will fuss or cry until she lays down and she'll shut her eyes and shut out the world. I think she would lay there all day trying to sleep her time away if I let her. If we go out then she is fine and she jabbers and smiles. The minute we're back here, its avoidance-ville.
The last 2 days have been busy with Embassy appts. and medical visits. All formality. It is basically long spans of time waiting and a few minutes of paperwork. Today Ember was issued her Visa to enter the US.
Tomorrow is our big day. We are being picked up for the airport at 4:00 am and we should arrive HOME around 6:50 pm. I'm nervous about keeping her happy for such long flights. Since she won't eat I can't bribe her with food, since she can't move her arms she can't play with toys...poor girl.
I can't wait to be home!

Notice how she carries her left leg! Straight up in the air!

Friday, June 17, 2011

A new Senti

We got up this morning and headed straight to the orphanage to get my new daughter! They were waiting for us and asked me for the clothes I had brought. I even needed to provide a diaper for her! Ember wanted to come to me right away! Once I had her in my arms all her caregivers were asking her for kisses. She wasn't much interested though so we said goodbyes and headed out. Once outside I gave my mom my camera so she could video us leaving through the gates. She also took a couple pictures and we were on our way. We caught the bus back to the apartment and Ember was doing great. Until I tried to put her down in the apartment. She had herself a good long cry. Then we cleaned up and left for a bit of shopping - a new suitcase to help bring home extra goods :) We got back here for lunch and Ember ate a big lunch for me and is now currently napping. I decided to check out the video my mom took this morning of us leaving the orphanage for good to discover that she didn't hit the record button! Seriously! The once in a lifetime event has been missed. I hope her pictures turn out on her camera cause its all we have.
Ember is a funny little character with a lot of personality. I can't wait to get her home! Tomorrow we catch the long train to Kiev. On Monday and Tues. we have Embassy appointments and then we hope to fly home Wed!!

Thursday, June 16, 2011

Big long day, poor scared baby!

Today was an long long day. We were picked up by our facilitator around 7:45 am and headed straight to the orhpanage. We were to pick up Ember and take her to the passport photo place. We were waiting in the common area when they brought her to me. She instantly knew something was up. She started to wimper and cry softly. We took her to the car and that did nothing to reassure her! The entire drive the poor girl tried to be brave. She fought crying for everything she had. She mostly wimpered and needed to be help closely. After the picture taking we brought her back to the orphanage. Then the marathon truly began. We go back and pick up the pictures, then head to the local passport agency. Wait an hour or 2 in the HOT sun, sign papers, then take them to regional passport agency. Drop off papers and head to bank. Sit inside bank for 2 hrs. while they close the account in Ember's name. Drive back to regional office and pick up passport! Oh yes, and the best news - we were able to get Ember's new social security number in just 1 day. Yes, we had been told there was no way to to get it quicker than next Tues. Our facilitator walked in to the office and walked out a short while later with the best news - she was able to get it right then and there! She said that never happens. By about 4:00 pm we were done with business and Ember is ours! We decided to let her have a last night at the orphanage and come in the morning and pick her up.

Tuesday, June 14, 2011

Series of unfortunate events

Well we are here. Finally. Our flight from Chicago to Munich ended up being delayed nearly 3 1/2 hrs. so we missed the only flight from Munich to Kiev. So, we ended up flying to Munich, then on to Frankfurt, and finally Kiev. Oh it was a long couple of days. While there we had no internet which was torture! My mom and I did have a nice couple days touring around though.
Monday night we caught the 15 hr. train to Ember's region. We were picked right up at the station and brought to the orphanage to start paperwork. We were able to see Ember for a short time until our we needed to leave for Ember's birth city where we needed to conduct some business. Once there we were told "not today". Not only that but we were told "not Wed. either". We cannot proceed with the next step until that is finished.
This evening our facilitator called and told us that we are going to go again in the morning and try. BUT that the earliest we can hope to be completed here is Thurs. but more likely Fri. or Monday. Then we still have a couple days worth of work in Kiev. No short trip for us I guess.
I don't have pictures today but will add some tomorrow. Today is the first time we've been able to have access to the "net" and it feels good!

Friday, June 10, 2011

On the road again...

Today my mom and I head back to Eastern Europe. I woke up this morning with just a terrible headache. I am really struggling with my emotions the last couple days. I think I'm tired. I want this to be over. I want Ember to be home and my family to be all together.
I am so glad that my mom and I are taking an extra day at the start to see some of what Ember's country has to offer. There are some beautiful and historic sites and I am grateful we will get to experience some of that. Monday night we will catch our train and Tuesday we'll be in Ember's region. I can not wait to hold her. I can not wait to take her out of the orphanage forever. She is a precious jewel that is worth this effort.
Please pray that we have smooth travels - we only have a 35 min. layover when we arrive in Munich to catch our next flight. It isn't likely we'll make it but I have learned time and again that anything is possible!
Next post will be from the other side of the world! Ember, here I come.

Wednesday, June 8, 2011

Home sweet home - for 2 days anyway!

We made it home on Tues. night. I love my home, I love my country, and I LOVE my kids. Oh, it is just so nice to see them again. Tonight I am so grateful that we were able to make it back for our son's 8th grade graduation. It meant so much to me. I'm trying to soak it all up because well on Friday my mom and I head back to Kiev. Yep, I will have been home only 2 full days. I just can't wait to go get Ember and bring her home.

Saturday, June 4, 2011

Hi all,
Well, we had court yesterday. It was both everything I expected, and nothing I expected. We were nervous but everything went smoothly. There were no surprises and the court granted us parents of Elizaveta - now Ember Grace.
We had our last visit with Ember this morning and it went great. She is officially ours and officially Ember Grace Senti.
We plunked her down today and she sat on her own just fine and started swinging her arms back and forth by twisting her torso. It was pretty dang funny to watch. She has triceps, but the jury is out on biceps, so she can pull her arms one way and uses her torso to flop them the other way.
We set up a few plastic toys about chest high in front of her and she would whack them down with a quick twist of her torso to get her arm swinging. Pretty dang inventive little creature. I kept moving the obstacle farther away and she can really get that arm swinging around to whack stuff. She had this little grin. Seemed to me she hadnt had the chance to do much like that so she was pretty gassed.
When we came in to her room this morning she was on the floor and was on her stomach. She cant use her arms so she has learned to arch her back. Poor kid must face plant an aweful lot. Funny and pathetic all at once. She flopped around on her back though lickity split. She is very motivated and I think will take very well to therapy.
The girls will be fabulous for eachother. I can see Ember bossing Sienna around to get her things, and I can see Sienna learning to get things and manipulate objects and puzzles because her sister cant. Perfect!

We are just packing up and getting ready for the 15 hr. train to the capital. On Monday Thad has his appt. at the embassy and we fly HOME on Tues! Yippity Do Dah!

Love to you all.


Wednesday, June 1, 2011

Terrible blogger, I know

I admit I am not good at keeping up with the blog. I am sorry for that. I have so many pictures I would love to upload but they are on my camera and I don't have a way to get them on to my husbands computer so I have to rely on the pictures he takes with his cell phone. The whole process is more than my mind can handle right now!
Ember is doing good. She no longer cries when we come get her and she doesn't bat an eye when Thad takes her. Sometimes she retreats inside herself still but most of our visits are pleasant and we can get smiles and even a few laughs from her. Today we actually got to feed her both breakfast and lunch. Breakfast was some oatmeal type of food and lunch was both a chicken soup and also some ground beef mixed with either applesauce or potato gruel. Couldn't tell. She ate fairly well for me - with encouragement from her caretakers. When she refused more from me they grabbed the spoon and she ate more for them.
The orphanage is quite nice. The grounds are quite lovely and they have plenty of toys.
Our days are pretty much like this: get up and take long walk to catch the bus to the orphanage to get there by 9:00. Visit until around 11:00 and catch bus back to our stop and walk the long walk (uphill) back. Get lunch. Rest. Around 4:00 we repeat the process and try and visit from around 5:00 until 6:00 or a little after. Then dinner and bed. It is very tiring.
I have a specific prayer request. We have a court appt. for Friday afternoon. Our facilitators are waiting on paperwork to arrive from Kiev that are needed by court. If they arrive, we can have court, catch a weekend train to Kiev, go to the embassy Mon. morning and fly home Tues. This would mean so much because we could be home for our son's 8th grade graduation on Wed. If the paperwork doesn't come before Friday, we have to reschedule court and we will not be home Wed. Please pray for court on Friday.
Enjoy the pictures. Each visit Ember is dressed in different clothes so we see her in a variety of outfits each day. The others are of the orphanage and grounds.





Sunday, May 29, 2011

Nice Day

Today was a nice day. The weather has been so nice and sunny. We spent some time walking around the street market soaking up the sights and smells - not always pleasant! We had a great pizza for lunch, and of course spent some nice time with Ember. She was a bit more hesitant today but when we started playing with the balls she brightened up. She still will not let Thad hold her. He did take her today and she didn't cry too much until he sat down with her. Then she poured it on! I took her back and she did quit crying but pretty much shut down for the rest of our visit. She became very subdued and quiet. She is a smart little stinker and can mimic any face we pull at her. She copies all of Thad's expressions. I can't wait to see her again tomorrow. Thank you so much for your thoughts and prayers.