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.

Update and new evals

So the school messed us around and gave us summer school, a whole 2 weeks for speech and so I went back to Benaiah's dr and asked for outpatient services.  Benaiah is qualified for 2 sessions of ot and speech a week and one of pt.  He is doing good in gross motor and is only 10-15 mons delayed and the pt promised to work on falling so he will learn to not bounce his face off the ground.  He has gained some months in speech and is now 1 yr 9 mons in expressive and 2 yrs 3 months  in receptive.  He is still very delayed as he was 47 months old when tested.  He is saying more words now but not complete sentences.  He also will copy you and I hope sometime it will click.  Last week he was really into his signing times dvds and he sat and watched them for a long time.  Since then, I have seen more signs. His speech therapist though does not want him learning signs and I told her that he says words with his signs.  He actually picks up some new words.  She agrees though that he is locked in his body.  The orthopedic dr turned into a flop so we are being referred to Children's.  I will not waste time in Columbia any more nor will I recommend them to anyone. Tomorrow we head to the Zoo.

Montage and drs updates

Benaiah hiked really, really good.

This is his reaction to all of his drs appointments.  

May is pediatric stroke awareness month.  Benaiah is in this montage in 2 spots. 

 

We are back from the Smokies.  Benaiah traveled really good. Now starts the insanity of drs and therapy appointments.  Neurology, urology, physical therapy and occupational therapy.  Now we are also throwing in an orthopedic because his xrays came back showing his right leg is bigger.  No suprise to us, we knew it.  He will be, Lord willing, getting outpatient physical and occupational therapy since the school system refused to give him ot and pt thru the summer.