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.

Seizure and speech

Benaiah thought 140 days was long enough to be seizure free....so on the night of the 140th day he decided to have a seizure.  It was his typical kind but it scared him. That seizure began the circus of trying to get a dr to see him.  In Ukraine, Mike W wants to see him when he has a seizure and we usually do an eeg then also.  Here in the States, we are waiting to see a Neuro and have been waiting since January.  Because the Neuro  hasn't seen him he couldn't do anything for us. His office told me to get him into is pcp.  His pcp refused to see him and said bring him in when he has another seizure. This is totally unacceptable and the Neuro also agreed with it.  Thursday was a very frustrating day. Friday turned into a blessing in that the school has accepted Benaiah into the summer school program for speech 2 times a week during summer school and then in July one time a week.  I was thrilled as he really does need speech and not a 3 month break from it.