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.