Neuro update

Last week, Benaiah and I went to see Mike W.  He thoroughly examined Benaiah.  He looked closely at his legs and said they looked pretty good.  Benaiah was very afraid of him and Mike wondered why as he loved Mike W before.  Benaiah insists he hurts him but Mike W has never done anything mean to him.  As long as the seizures stay away we don't have to see him till the end of March.  Afterwards, we went to MCD's for the lunch I promised him.  Benaiah was a trooper that day as before our appointment with Mike W, we walked all over town going to 2 pharmacies for Benaiah's meds.  It is wonderful that we don't need a prescription for his seizure meds.  We are spoiled now as we don't to get 3 stamps on his prescriptions like we did with the phenobarb.  Needless to say after all that walking, Benaiah fell asleep on the village bus.  Poor guy was wiped out.  I am thrilled that we are thru visiting the Neuro in the winter.


Benaiah has been busy working on preschool and talking.  Wow, he sure is saying alot.  I am beginning to have hope that Benaiah will be talking as a normal child some day (whatever normal child is).  We understand him but he says words strangely at times  Benaiah will now pick up the ipad and work on his ther apy apps and even the articulation station one.  He seems to want to talk.


Benaiah is truly a blessing and a ray of sunshine in our lives.  The Lord was very merciful to us as Benaiah was sick in the beginning of the week and he did not have a seizure.  I was prepared as his meds have not been upped since October.  We are enjoying these last 19 weeks being seizure free.  I know though that if he does have a breakthru that the Lord will be with us.

This is what we worked on today.  On the last row, I held his hand.

 

Look it Woie, me footprint.

Wordless Wednesday

Wordless Wednesday

Some Thoughts.

If you are friends with me on FB then you know this was my status for today-"I am completed sickened. I was researching the stroke medicine Benaiah was put as a 3 month old baby here in Ukraine. Come to find out the seizure medicine they started him on was for head drop seizures which got much worse in the states. If we would of stayed in Ukraine and kept him on his meds, I wonder what would of happened. Instead we went to the States, had a dumb neuro who wouldn't admit he was having seizures. So for over 8 months he had seizures. Thank you Lord for taking care of us here in Ukraine."  

The whole reason that I went back and translated Benaiah's medical records from when he was 3 months old was because a new treatment for stroke was brought up in my CHASA Pediatric Stroke group and I mentioned that a Neurologist here in Ukraine gave Benaiah a special post stroke med and also started him on a seizure med because of his thumper rabbit leg shaking.  Wow, I didn't realize that since I took Ukrainian lessons years ago that I would be able to actually understand what the doctor said.  It probably is good that this was over 4 years ago cause it really bothered me knowing that for 8+ months Benaiah had seizures that were never treated because a Neurologist in Chicago( an old lady from Denmark who should not be practicing anymore) refused to listen to me but only went with what her EEG showed without even acknowledging that a child can have seizures and have a clear EEG.  It is beyond me as Mike W says to catch a seizure on an EEG is like playing the lotttery and it is much better to listen to the parents as they know their child.  Thank you Mike W, we love you!  


Benaiah's seizures have been prettty stable and infact today marks 17 weeks seizure free.  We of course are thrilled.  But the Apraxia thing is throwing me off.  Benaiah could say the k sound but suddenly it has disappeared and been replace with the t or p so cup is pup or cake is take.  It is really bothering me alot but today I am proud of my little man.  He worked in his workbook and wrote the number 1 and also has been spelling with Rocket Speller on his Ipad.  He spelled twig, scooter, blender.  He obviously is learning his letters.  Here are some pictures of him working.  He holds his pencil beautifully!

What Has Benaiah Been Up To?

 This is what he is up to- trains, pre k homeschooling, speech, washing dishes, helping out, trying to fly like superman down the stairs, buddying up with Jerry our dog, stacking firewood, learning to play Super Mario Bros.  Benaiah lives life to the fullest.  He is becoming a very big helper and a great little worker.  He works hard on his school stuff while Silas is at school and then it is play time when Silas comes home. Today he had a nap and it is quite obvious that he has outgrown his nap as he couldn't fall asleep so he got up and sat with his night splints on and played some Super Mario Brothers.  He was being silly with the pictures.  Notice Jerry in the background of this last picture.

Fireworks

 Our only picture of all the fireworks.  We were too interested in watching them than taking pictures.  This was our own display.

So excited

Too loud!

So, we found another of Benaiah's favorite things.  FIREWORKS! He was so excited to see the fireworks at midnight New Years Eve that for a couple of nights he stayed up to wait for more, even though we told him there would be no more.  New Year's Eve in Ukraine has an insane amount of fireworks, people light them off themselves.  When we lived in the apartment, it was down right scary.  Here in the village it is enjoyable.  Maybe on Old New Years there will be more fireworks.

Wordless Wednesday