Just when we thought that our plate was full in life, God dished us up some dessert!




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Saturday, October 30, 2010

ABR... a piece of cake! And guess what???

Stas can hear....just fine! Everything looked great, which totally shocked me!

I really didn't think this was the case. Here is my best guess. When Stas first came home he could not hear, at least not much. I really think that was the case. He loves when we retrieve him from his bed, yet when I would creep up behind him, talking at a normal volume he didn't notice a bit...then I snapped and he turned and was so delighted. After tubes I think he started hearing much better but nothing had any meaning to him. So, as of 6 weeks ago he can hear and now things will start registering. Now that I know he can hear I'm going to be a little "pushier" with him. I will put him in front of the TV with Signing Time, for one...Like, in a highchair so he has no choice but to watch it because it will be right in front of him. And he will watch the same one over and over....good repetition.  He seems to be picking up on some things. He is so close to walking which is very fun.

Did I tell you how much I love that sweet, sweet little boy? Oh, he is just precious. I can't get enough of him. And Ricky is starting to like him now too. He thinks it is funny when we teach him sign....he tries teaching him too. 

We have an article coming out in our Archdiocesan newspaper, The Catholic Spirit, about Stas' adoption. Eager to see it. Hoping...praying....that many families are touched by our story, other families' stories and seeing all of those precious souls on www.ReecesRainbow.org ,  and viola! they will begin that blessed journey called "adoption" as well! Praying!

On our way up to the ABR.

Yay, got the IV in on the first try! That is a huge success with those little fluffy, doughy arms.
Playing Patty cake!

Thursday, October 28, 2010

Monday, October 18, 2010

Plain old updates

The big brother getting his brother into his first day of school...
 




 Totino-Grace Homecoming Football game....

Did you notice anything about Stas? He got GREEN glasses! It wasn't my first choice. As it turns out Miraflex now makes a medium brown pair. That sounded perfect until we lost Ricky's glasses many times the weeks before ordering and I decided the brighter the better!
 The three kids in the class with glasses...

Fall in Minnesota....beautiful!

 Maggie had fun when she was home sick from school one day.

Our high schooler's Respect Life group went to the Buddy Walk in St. Paul MN....Niiiiiiccccccceee! 


Is it important for me to know WHY Stas does this to the little airplane?
video

Just a plain old update.......
Oh, and one more thing....please pray for sweet little Taya (4 1/2 years old, 21 pounds) who is on her way home from Ukraine right now. She is probably getting on a plane while I write. Poor love. She is in need of a lot of good medical care and obviously a whole lot of TLC!





Wednesday, October 13, 2010

Heartbroken...

...devastated, crushed, just hurting....



Anne Marie...Anya...has gone to a far greater place. She is now in the loving arms of her Father. She is in the arms of her Savior, Jesus, and wrapped in the mantle of her heavenly Mother, the perfect mother, Mary. Why then does it hurt so much to all of us who advocated for her and loved her here below?

Anya was a beautiful girl, born November 25, 2005 in Eastern Europe. She had Down syndrome.


She was likely born to parents who were shocked, fearful and felt helpless. She was likely abandoned at the local hospital, as most are, and stayed there for two weeks before she was moved to the regional hospital until she reached two months of age. From there she went to the region's orphanage. The same orphanage as our sweet Stas.


A beautiful picture that Heather made to advocate for AnneMarie.
She is another person that would have gotten her had she been able.


Born with a heart defect, which likely could have been repaired had she been born in the the U.S. or a healthier society, Anya entered a low-stimulation room and stayed there day after day. Her days and nights were spent in a crib. Mostly likely she slept in one crib and played in another. In the warm months she made frequent trips to the doctor's office in the orphanage to get IV hydration. She was not allowed to walk because "it was too hard on her heart." When families would ask about her she was waved off as a piece of filth. The caretakers, who seemed very kind, would point to her heart, draw a heart on their own chest, scowl, and wave their hand at her as if to "shoo" her away, and let me know she wasn't worth taking. Their hand gesture let us know that she wasn't even worth our inquiry. They were quick to point us to another child or two...one of whom was sweet Taya. She had her forever family coming for her shortly...praise God!

Anya had weaseled her way into our hearts before the trip to go get our precious Stas, but after meeting her and spending time with her (though not enough) she bedded down in our hearts. My daughter Lizzy spent some nice time with her and has some beautiful pictures with her playing "patty cake", "peek-a-boo", and giving her a little hand massage. I'm glad she got to experience this little innocent soul. Anya touched her deeply. I haven't told Lizzy the news yet and know she will hurt deeply.








One warm summer day while visiting Stas we brought lotion, baby bath and baby powder to Anya and Taya's group. We saw their group once or twice a day sitting outside under the tree in little umbrella strollers. Many lay in portable cribs or buggies. There room was on a lower level by an outside door which allowed them to bring strollers and cribs outside for fresher air. Feeling a little brazen, I put lotion on my hands and started giving some mini-massages. First to Taya and then to Anya....oh, that felt so good....for me. It was fascinating to see little Anya come to life after that massage. Her senses were awakened. She craved attention. Every time we walked by she watched our every step. Every picture we have, with her in the background, she was watching intently.

I ponder why it hurts so much for us that loved her so much. Don't we want heaven for all people? Yes.  Anya was loved and we WAITED for her forever family to find her. She found her heavenly family, the best there is. Shouldn't we be rejoicing? Of course...at some level. But, Anya represents every other child in Eastern Europe with Down syndrome or any other disability whose life here on earth will be snuffed out because they were not born "typical." They were born into a post-communism society that is repressed and unable to care for the "least among them." The society doesn't know what to do with these children/people. In communism, the focus was on productivity, and from a work-force perspective, they weren't productive. So...they got sent away. There are those in Eastern Europe who advocate for their own children or others with special needs and we can pray that someday they welcome these precious children and learn that they are the best teachers we have. Of course, we in the U.S. have a lot to learn too...with an abortion rate of 90% among those discovered to have Down syndrome our hearts are not where they should be yet. These precious children are teachers of our souls. They do our heart so much good.

By the age of 4-6 years old, children in Eastern Europe with special needs are transferred to mental institutions. Their prognosis is bleak. I have been told that 80% of these children die within the first year of transfer.

If you see this post and are moved, please pray for these children. Go to www.ReecesRainbow.org and see if you are being called to adopt one of God's special children. Yes, it is expensive. The reward is unbeatable. These children need a loving family. A mom to hold them in their sadness and praise them in their accomplishments. They need a dad to love them and cherish their goodness, throw them in the air and make them giggle. They need siblings to be their lifelong cheerleaders and unconditional friends. Might you be that family?

Here is Anya....look at her inquisitive nature. Look at her giggle when Lizzy just waved at her. I wish I would have ripped her out of that stroller and just hugged her and hugged her....

Rest in peace sweet Anya!



video

Saturday, October 2, 2010

Is therapy really therapeutic?

Most definitely!!!

Remember...Stas came to us only able to eat mush, like this....every meal looked the same. Any texture without enough liquid and he choked:


On occasion Stas would find a cheerio or even an M & M on the floor and we would find a little puddle of throw-up with, say, an M & M in the middle. He had no idea how to get the food to the back, to chew, to lateralize the food back and forth from side to side to chew.

Let's follow the progression:

Stas' tongue is frequently out. When he eats he sticks it out and has never learned to eat with it in his mouth. Step one, work on the tongue staying in to eat. This is the spoon that helped tremendously. It still comes out a little to swallow, but nothing like it used to. Watch in the video how his tongue retreats because he feels the texture:

video

We have been using the chew tubes to strengthen the jaw and help with jaw stability:

Then came the Veggie straws or veggie fries....we would place them in his back teeth, being careful that the piranha didn't munch our fingers off!

These things are so tender but he couldn't even bite through them at first. Once I left a veggie straw on his highchair and he picked it up and ever so delicately put it between his back teeth and bit it. It was so exciting that I decided he was ready for this:
video

Okay, fine....he still needs OT based on his finger skills there.

While we were working on eating/chewing, we were of course working on getting him off of a bottle. This started with a straw:
First the honey bear because it was flexible and because you could help squeeze to get the fast feedback of a drink. Then this other straw that you cut and make the mouth part shorter and shorter so only his lips eventually fit around the end (without the tongue).

We switched speech therapists and she had a better idea, she thought. The verdict is still out.

The idea is to use the ridge to get his tongue in and learn to wrap his lips around the edge like we would do....I don't know. Time will tell. He bites on it and gets frustrated and it runs all over.

So, yesterday I was at my mom and dad's house and the neighbor was selling Tupperware. I have been looking for the old, no nonsense, regular sippy cups without all of the bells and whistles because neither boy can use them. Ricky drinks thickened liquids and none of the no-spill cups work.

I tried this regular old cup with Stas and I think it is a hit. I can get him to pull his tongue in (sort of) and he sucks. He thinks it is hilarious and did it a bunch of times. The first video not as successful but awfully cute (if you can ignore my voice again! Sorry.):


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This one he gets it at the end:


video

As of today, he no longer uses a bottle and many of his meals I am able to break up pieces of food, put it on his tray and he finger feeds.

I would say therapy helps!! How about you?