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.