Simply Amazing

22 weeks seizure free.




      I went to Benaiah's seizure tracker website and ran a report.  It is a great program, free and it keeps track of Benaiah's seizures.  Now, I wasn't so good at keeping the site up to date while we were in the States because of not having internet but I still ran the report and enjoyed seeing 5 consecutive months of being seizure free.  I wish I could figure out how to put the chart on here because it made me so thankful that he has very good seizure control.  He seems to have good control in late fall to spring.  Last year we made 6 months.  I wonder if we will make it longer this year.

     Also, it has come to my attention after reading some of the posts in my apraxia group that people really do not know what apraxia is or how a person feels with it.  So I will be posting different facts on Apraxia so that you can maybe understand Benaiah more.

    Some of the things I found really fit Benaiah.  Believe me, if you spend any time with him, you know he is smart.  I read today that having apraxia is like being tongue tied.  Can you imagine being tongue tied all the time?  I also found out that if a child with apraxia thinks he can't do it, he won't.  There is no way you can force him to talk and please, please, please, don't make fun of him or correct his speech.  For example. Benaiah says dink for drink.  This is a good aproximation for the word drink.  So dink is acceptable now.  Eventually, he will get the r sound but for now he doesn't have it.  Aproximations are allowed with apraxia.  Another thing, Benaiah gets very nervous when meeting strangers and or people he isn't comfortable with. He clams up or hides. This is part of apraxia.  Sometimes he needs to be by himself.  Today, he spent most of the day outside in the sand box by himself.  He talks now when he plays and he is saying more and more new words.
     
    Yesterday, we put on our flylady shoes( a great cleaning system) and Benaiah helped me work in the attic.  He asked me before we went up there if we were going in the attic.  No one has said attic to him as far as I know.  I know he has not copied the word from me and I have not been trying to teach him that word.  My heart just soared and I wonder what other words are floating around in his head just trying to find a way out.

     I have been working with him trying to teach him I love you, which if I sign I then he says I, sign love then he says love and when I point to him he says you.  So with alot of prompting it is coming along.  He counted to 5 yesterday- one, two, tee, or, ive.  We count all the time.  The other day he helped me make corn bread and he counted how many of each ingredient.

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.

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.

Speech update

Benaiah has speech 2 times a week thru the school system.  Miss Tina told me today that he is doing really good in his group setting.  He has adjusted wonderfully. He still speaks in his own language but she tells him the right words when he talks in Benaiahese.  I asked her when I picked him if they are working on Hi as he says Hi to everyone now.  Yep, one of the things they are working on.