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.

crazy schedule

So life has taken an insane turn.  Starting this week, Benaiah will have 9 therapy sessions a week.  He is really progressing and we hope to get him to the spot where I am confidant to work with him once we get back home to Ukraine in November.  It has really become apparent to me that I live in the state of denial at times.  It is bliss to think he doesn't have this or that wrong.  Now we know what I have feared all along, the cerebral palsy is causing problems in his legs.  The night splints are working great and last night I caught him trying to put them on. We also had to up his Lamictal because he had a breakthru seizure.  I find it amazing that when we upped his medicine then his speech took off.  I need to ask Mike W about that.  Benaiah has adjusted to all of his therapy and loves his therapists, he also is using proloquo2go and it is helping him alot..  Next time I promise to post pictures.

Proloquo2go, night splints and a trip up north

Benaiah is really taking off with the proloquo2go.  He was able to "say" bake a chocolate cake last night at bedtime.  He is also able to tell me that he is frustrated and he is finally getting the idea of proloquo2go.  I am excited and have great hope that he will be able to communicate with it.  Between signing and this app, we are making headway with his communication.  I am still amazed when I look back at how the Lord has led us.  Really, I shouldn't be amazed but this trip in Holland is hard at times but the Lord has been right there with us.  We are figuring out how to work with this apraxia.  

Last week Benaiah was retested in OT.  Mr Justin was amazed at the progress he has made.  He went from 25 percent to 50 in hand eye coordination and 5 percent to 8 in fine motor.  We obviously have alot of work to do.  But he is working hard.  He traced his name on a white board and he also traced a square.  All the while, Mr Justin says that he is vocalizing alot more.  

We had to take a break from the night splints because of redness and yesterday I watched him trip over his toes twice.  I will be writing Mike W and asking him about an orthopedic dr over there that can take care of Benaiah.  Speaking of Neuros, the Neuro here will be seeing Benaiah before we head back to Ukraine.  For a while it looked like he would not be seeing a Neuro till we got back to Ukraine thanks to insurance companies.  But the guy has proved he is a good guy.  

Benaiah got to meet his cousins this weekend at a family reunion.  He had a great time with Maya, Bryan and Brandon, but the most fun he had was with Copper and Baya.  Those 2 little dogs loved Benaiah and he loved them back.  But he could not handle their barking, he would cry and cover his ears.  By the end of the weekend, he would just cover his ears.  I would love to know what he felt when that was going on. At one point those 2 dogs knocked him down and were licking him in the face.  He said no to them meanly but then started laughing.  

Mrs Bower called me today and prek starts August 20, but Benaiah will only be going to school for services like he was last school year. Missouri really is a good state for special needs.