It is the little things.....

Benaiah has been a busy little guy.  Yesterday, he made this snow man.  He cut out the circles and glued them. He also can fly through the first set of his apraxia flash cards now and even say a couple he didn't know before.  His new words include turkey, boys' room and saying boat correctly instead of  saying boak.  Today he worked with Vacil and got covered in cement, but he had fun.  Tonight before going to bed he said "Momma no read book me no nini"( If mommy doesn't read a book to me I am not going to sleep).  I have been pushing the book reading and it has clicked obviously.

This is the snowman that Benaiah made.

Therapy

 Ever since Benaiah was a baby, the presents all revolve around things that can be used for therapy.  So Benaiah was given a scooter board to work on upper body strength from Miss Denise.  We gave him a put together set that requires 2 hands and a alphabet puzzle that will be used for speech.

 Benaiah was working on his scrapper sounds with me Christmas night.

 This morning he played his lego game which requires 2 hands.  Then we changed up the plans and worked on tracing and repeating the names of shapes.  Benaiah took a break and played with play dough.

 This is the first time I pulled this out here in Ukraine.  He seemed to really like doing this and worked long and hard.  We talked about all his OTs that are back in Missouri- Miss Denise, Miss Cathy, Miss Abby and Mr Justin.

His hand looks good to me.  He still holds his pencil correctly.  Benaiah is a sweet boy who is starting to say more words and over all he really has joy about him.

Why?

    The why questions have started.  Benaiah has been asking why for a while now, but never has he asked why do I have to wear braces, why not Silas?  Why can't I talk? 

     So tonight while putting him down for bed I got to tell him all about his stroke, how happy we are that he survived, why he can't talk, why he has to wear his night braces.   He seemed to understand epilepsy the most, but up until this summer that was the biggest thing we were dealing with that he would remember.  During our furlough this time he ended up with alot of physical therapy, occupational therapy and speech so he has figured out that something is different with him.  I told him I was so proud of how hard he has worked and how far he has come. How he can use a scissors, hold a pencil correctly, jump.  I told him that I believed that he has many words in his head that his tongue can't get out.  He then proceeded to say tongue and then stuck it out.  I told him God is using him already and that God never makes a mistake.  Patch the Pirate sings a great song that he wrote when he was battling cancer.  These are the words:


Rejoice in the Lord

God never moves without purpose or plan
When trying His servant and molding a man.
Give thanks to the Lord though your testing seems long;
   
In darkness He giveth a song.
I could not see through the shadows ahead,
So I looked at the cross of my Savior instead.
I bowed to the will of the Master that day;
Then peace came and tears fled away.
Now I can see testing comes from above;
God strengthens His children and purges in love.
My Father knows best, and I trust in His care;
Through purging, more fruit I will bear. 
O rejoice in the Lord, He makes no mistake.
He knoweth the end of each path that I take.
For when I am tried and purified,
I shall come forth as gold.
—Ron Hamilton (“Patch the Pirate”)

    Tonight was tough for me, but I knew it was coming.  I believe he went to sleep understanding more about himself.  

12 weeks

Being prompted to say Merry Christmas and presents.  

A better smile

Benaiah made 12 weeks seizure free yesterday.  We were obviously very happy and I am counting it as one of my Christmas presents.  Benaiah has complete understanding now about what Christmas is.  He can mimic Merry Christmas.

A month home

So we have been home for a month now.  Benaiah has adjusted very well to being home.  He likes to help in the kitchen and play with Silas, 7 yrs old.  We have been working on his preschool workbook pages and he really seems to understand the concepts. He holds his pencil good and is cutting with a scissors well.  I have to watch his hand position but I am pleased with how he is doing. I have him repeat the pictures so he is also getting speech.  He has fallen in love with books and enjoys listening to them.  This morning I woke up to him working on his flashcards by himself.  Oh and lastly, he loves the snow.

Thank you Lord!

Benaiah went and saw his favorite Neuro today.  The man was smiling and kept smiling which made me realize how much we were missed and how much he truly cares for Benaiah.  Mike thought Benaiah talked more and when asked his colors in English Benaiah answered correctly and that obviously impressed him.  We have a new plan of action and down the road I will be referred to an orthopedic doctor.  Benaiah's tone in his legs was brought up and Mike is under the impression that him being a kid is much better at this point than an pt or ot.  Now I am not sure what pt or ot involves here in Ukraine but he did offer therapy if I wanted it.  For now though we are going to go with just letting him be a kid. I thank the Lord for giving us Mike.

Favorite things

We have been in Ukraine since Wednesday morning.  Today Benaiah and I worked on his apraxia workbook and tonight I asked him what a couple of his favorites were. I asked him what his favorite color was and he said black.  At this point I wasn't sure he really understood the word favorite.  Then I asked him what his favorite animal was and he said слон- elephant.  So yes he understands the word favorite.  He seems to be talking more.  Today I noticed that the school has more playground equipment which will be great for helping Benaiah's upper body strength.  Over all Benaiah is doing really good.  He is walking the stairs well, he loves his sand box even when the weather is below 40 degrees.  Tomorrow he wants to go to Tatas'(Stefa- this is what came out when we tried to get him to say Stefa) house to see her puppy.  Here is a picture of one of Benaiah's favorite things

Hi from Krakow

Our flights on Monday went very well.  The check in lady for Polish Lot was amazing.  She started by giving the 2 little boys stickers.  Then she complimented Benaiah on him being a sweet boy.  This is the lady that helped me figure out what the Warsaw office wanted for the medical form because Benaiah has epilepsy.  We are all happy to be back in Eastern Europe. 

  Benaiah hasn't had a seizure but he did have a funny spell on the flight from Warsaw to Krakow.  This was after they loaded us on a bus to cart us back to the terminal and dump us in the waiting area.  No seats were available.  It was nice we had the medical form as we ended up needing a wheelchair for Benaiah.

Running after the pigeons.  Look Cousin Maya, Benaiah still has the elephant.  

Benaiah has started back with his speech therapy with me as the therapist.  We worked hard last night, jet lag is a great thing :), with his Apraxia workbook and today this is what he said "I want nut....I want more please....I want more nut, punk......I want more nuts." Yep, I got a plural out of Benaiah after many tries. Benaiah doesn't say plurals and he also doesn't talk to strangers.  So if you see him and say Hi to him, don't be suprised if he doesn't answer you cause he usually can't.  I am very interested to see what Benaiah's reaction to Stefa is.  He knows we are almost home. 

Indiana

We are now visiting family before we leave on Monday.  Benaiah has been doing very good with the interruption of life and the break from therapy.  He loves his aunts 2 dogs and I think they may love him but may find him annoying.  He says they are going to Ukraine along with his grandma's dog.  So it appears we may have a dog lover in the family.


If you plan on shopping at Amazon, please take time to support CHASA. If you're buying items from Amazon.com this year, you can help raise funds for the Children's Hemiplegia and Stroke Association (the org that sponsors this facebook group). Amazon will donate a portion of sales to CHASA if you access their

site by using the link on the CHASA site. http://www.chasa.org/you-can-help/amazon-fundraiser/ There's no extra cost to you - it's a freebie, so help us out! This is what has helped me so much understand Benaiah's stroke and lasting effects

 

Finally, I didn't post this last month. I was thrilled to see we are getting the word out on pediatric stroke.  "The Children's Hemiplegia and Stroke Association, CHASA, was awarded the National Outstanding Group at the National Stroke Association's RAISE Awards this evening. CHASA was nominated for this award by Lisa Curely, Conner's mom. Lisa contacted us in July to let us know that she was nominating CHASA as an Outstanding Group. We were really excited and honored that Lisa wante

d to nominate CHASA. Lisa has attended the CHASA Family Retreat, so she knows some of the things we do to help kids with hemiplegia. In September, NSA contacted me to tell us that CHASA was nominated by multiple people - I don't have all the names - and that we were chosen for this award. NSA knew all the activities that YOU, CHASA families, have done to increase pediatric stroke awareness - purple hair dye, tattoos, signs on your houses, walks, selling wristbands, giving talks at school, making posters, setting up displays at pancake restaurants and all the other crazy things you do to spread the word about pediatric stroke.

So, what we want you to know is that every time you told someone that our kids have hemiplegia or pediatric stroke, you were spreading awareness. And, one of the adult stroke organizations took notice. Jana Smoot White and Julie Julie Stumpek Ring are accepting this award on behalf of all of you, the CHASA Families. This would not have happened without you!

Packing up

Benaiah is working hard.  We have been working hard at home and at therapy.  He met 3 out of 5 goals for school, this is impressive cause he did not meet any goals last school year.  Outpatient therapy has been scaled back as we are leaving soon.  Benaiah likes to work on his speech right before bed.  He really seems to respond well to night school.  I am confident that we have the right stuff to keep working in Ukraine. Benaiah has started eye blinking and I can not wait to get back to Ukraine to have an eeg done and to touch base with Mike W.  Please be praying for Benaiah and all of us actually as we finish up here and head back to Ukraine.  We leave Missouri Nov 1 to spend time in Indiana with our families.  We fly out to Krakow Nov 12.  Change is hard for Benaiah and we are praying he handles this all ok.

More seizures

Benaiah decided life was not crazy enough and in the last 2 weeks has had 3 breakthru seizures-2 of which were head drops.  It scared me badly as we have not seen head drops since he was a baby last time he was in the states.  I contacted Dr O in St Louis and he got back with me.  He upped his meds again and still did not run any more tests.  I am concerned about all these break thrus and am worried that something is amiss in Benaiah's head as we had such good control for almost 6 months at one point.  Now please don't tell me how it could be so much worse as I know that but I also know that we travel internationally with him and he needs not have extra seizures.  Monday morning I got an email out of the blue from Mike W in Ukraine. I know the Lord was in this as he wrote that he believes Benaiah is going to be ok and that he looks forward to seeing us when we get back home.  I cried as Mike W knows Benaiah's medical history more than any other doctor and he truly cares for him.  The Lord sent that email to calm my heart.  We are not guaranteed tomorrow and Epilepsy can fly out of control at any time.  On another note, we have our basic final schedule for therapy and Benaiah was seen at the Hanger today to make sure his braces are fitting ok.  Ot was so happy with Benaiah progress and was thrilled that he held his pencil correctly today. Lastly, Benaiah said a 4 word sentence all on his own.  He was playing matching zoo animals on the ipad and he won.  He yelled, "Mom Look! Me one! I was so proud of his words as he is still talking at a 1-2 yr old level.  But he is coming along and now the ball is in my hand and I get to be his therapist.  He is actually doing more at his age than I believe a 4 yr old should be doing.   

Cleared to fly

Sporting his survivor shirt with his mouth stuffed with bagels



Benaiah had a long day at Children's today.  We started in Orthopedic. The word is his ankles are not bad enough to do anything about.  I again told her that I don't want him smashing his face into the cobblestone in Lviv.  They adjusted his night splints( which I still don't have a picture of) and off we went to Zoie's Neuro appointment.  Zoie's neuro said she could tell Zoie was doing better. We were really fortunate as the Eye clinic usually runs late and I told them that if they were going to run late then I was going to have to skip out on the eye appointment as Benaiah's neuro was way more important.  The eye doctor walked in stating that Benaiah's medical records are very interesting as they state that even though he appears to have crossed eyes, they truly are not.  He wanted to examine Benaiah just so he could look at that. Benaiah charmed him with his sweet personality.  The eye exam proved again that his eyes are working perfectly, thank God.  The eye doctor also stated that there was no reason why Benaiah could not go back to Ukraine.  Another blessing! We then stopped for lunch at the cafeteria as I knew they had pizza hut pizza and Benaiah had done so well that I wanted to reward him.  He even said pipa(pizza) so I was thrilled.  Then we got to see Dr Adam. Benaiah loves him and so do I.  He took 2 hours with us.  Benaiah looks good neurologically.  He has brisk reflexes on one side(always had) but he walks and runs well.  He is delayed developmentally and has severe speech problems.  But with all of that Dr Adam said there was no reason not to go back.  He asked me what the plans for seeking service over in Ukraine and I told him I had already been in contact with Benaiah's Neuro over there.  The plan is that I carry diastat on the plane, it is in the paperwork for the airline, in case he would have a long seizure over the ocean. He then went on to say that our Neuro in Ukraine wrote the best medical history that they have ever seen, even in the states and that the Neuro in Ukraine knew what he was doing.. See, not all things are so terrible in Ukraine.  I am thankful for a good report today.  We fly in 2 month 2 days. Benaiah talks about Kraine(Ukraine) and I think he misses home and Stefa.

Brenden's smile pediatric stroke walk

Benaiah did quite well today.  Zoie did too. They both are sporting pediatric stroke survivor shirts.  It was a blessing to take part in this walk and to talk to people who have been there. 

Celebrating our Survivor

Acting like the chicken man in Toy Story

He wears his underwear proudly

Looking at the Rhino

Talking with me

Watching the elephants.  He loves them 

The elephants were very active today.  2 of them were swimming

Signing elephant to Daddy

Signing hippo

Watching the sea lions with Silas and Buzz

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Freezing while watching the penquins

Today was very hard.  Many meltdowns and I am looking forward to being with people who understand the after effects of stroke.  Zoie wonders if another seizure is coming.  Good question but I hope not.  Another surprise on the therapy front at school, health screenings next week so no therapy.  Are you kidding me?  Lord willing, I will post pictures of our stroke walk.

Knee immobilizers, shoe inserts and more

Well, bad me keeps forgetting to take pictures.  Benaiah has adjusted well to wearing the knee immobilizers at night.  He only took 2 nights to get used to them.  He is doing great with the night splints but has been sleeping with the right one off due to a blister. He loves his new shoes and inserts, they make him look huge.  On another note, the fight continues with the school about Benaiah's speech therapy.  Outpatient therapy was horrified when they found out he would not be having any one on one speech given how severe his speech problem is.  So they called the school and since then have played phone tag with them.  I don't know if it is a coincidence or not but since the phone calls Benaiah's one group speech has been changed back to one on one therapy.  Last Thursday Miss Nikki gave Benaiah an apraxia test and Benaiah now has an official with testing diagnosis of apraxia. I don't know how this will affect services as he needs more speech.  OT also found out that pediatric stroke survivor gets better services than cp so that is now in his medical records also.  My poor, poor baby.  I just want him to talk, to tell me his thoughts, dreams, ect.  Lord willing it will come.

In All Things Give Thanks

Apraxia has joined Benaiah's list of diagnoses.  I am not surprised but a little sad that we have to ad another one.  Benaiah received a gift from a friend of mine in the mail- 3 elephants.  He is in love.  On top of that he sang with the Toy Story theme song.  It made me cry as it was a big deal.  He now says he is a dude.  When Miss Niki gave him his homework yesterday, he said, "No, dog eat". The kiddo already has the homework excuse down.  She laughed and I did.  Then she really laughed when I told her that he did not have a dog here.  Then he said "kraine".  So his dogs in Ukraine are going to eat his homework.  I thought it was great.  It is time to hit the road as we are picking up his knee immobilizers today.  Yeah, yeah, yeah.  His feet are looking better.