I Love You

On July 3 a miracle happened, Benaiah said those 3 special words that I have been waiting years to hear.  He said I love you, unprompted and he said them first.  I honestly don't know why it bothered me so much that I never heard them.  Part of it was because he has for at least a year or so been able to express when he is frustrated.  Now he can say I love you, tell people hi when he greets them and even shake hands which is a cultural thing here that boys/men do when they greet each other here in Ukraine.  Benaiah is funny as he just sticks his hand in your face.  It is cute or at least to me it is cute.

We made 17 weeks seizure free before the seizure monster reared its ugly head.  I knew one was coming or at least thought one was as before the seizure happened he kept saying he had to clean his eyes.  Since then he has not said his eyes need cleaning quite as much.  The seizure was a pretty nasty one, nasty for Benaiah.  Thank God he came out of it ok as I was ready to call 101 for an ambulance, which would of been interesting on a Sunday morning with his Neuro out of the country.  

Kindergarten

What do books, computers and life have in common? 

Kindergarten, or my version of it for Benaiah.




School is going very well I think at this point.  Now that he is 5, I am trying harder to get him interested and we have a schedule we kind of keep.  It is called 1 lesson on ABCmouse.com and 3 pages in his workbook.     Today he traced his name for the first time and did pretty good if I don't say so myself.  We also incorporate signing times into the equation.  Speech therapy is going on all the time as is OT.  Bboy can cut and paste like a pro now, though cutting a circle is almost impossible for him.  He also is able to ride a scooter. Overall, I am pretty happy with how things are going with him.  I am constantly checking myself to see if what we are doing is working.  I have thought about looking at lapbooks for him, but have no idea how to even start that process or if it would even be a good fit for him.


Last week or so, Benaiah started collecting bugs.  He found 2 caterpillars and here is what they looked like yesterday when we let them go.

Happy 5th Birthday Benaiah

Happy Birthday Benaiah!




The Lord has been so good to us! Benaiah is doing extremely well.  He is 15 weeks seizure free! He can peddle a 2 wheel bike with training wheels! He is talking more but I can tell his pronunciation is bad, I seem to have fallen into the role of translator.  We talked about his birthday all week. He wanted a Rudy (from Ice Age) cake.  This Rudy had to have his mouth shut and then when it was made, he asked why he couldn't talk.  My friend Denise and I informed him we were not the Cake Boss and couldn't make a cake like that.  For his birthday dinner he picked pizza! Overall it was a very good day and I believe he had fun.  I think he would of opened presents all day if we had them.  

This is my post from facebook - Look how much you have grown Benaiah! 5 years ago I never would of thought of all that you have been through, all that you have accomplished. You have drive and determination, more than I have ever seen in a child. Benaiah, your name means God has made and I truly believe that he made you the way you are. I thank God for the sunshine you bring into our lives and I am also amazed at how God has used you and continues to use you. I love you Buddy, I hope you had fun at your party and that you have a great 5th year. I pray that the seizures stay away and that you will say I love you this year, along with many other words. I know you are smart and I can't wait to see what this year brings.

We love you Benaiah!

May is Pediatric Stroke Awareness Month.

http://www.youtube.com/watch?v=7n6QnyJeuEs&feature=youtu.be Here is the photo montage for 2013.  This is the 3rd year Benaiah has participated.

Benaiah is doing well.  He had a break thru seizure a while ago but no changes in his medicine.  We have seen Mike W a couple of times since the last post and has had 3 EEG's since we have been back in Ukraine.  I guess we are making up for all the EEGs we did not have in the States.  Mike W pronounced Benaiah healthy with a few minor problems(his words not mine).  He proceeded to play hide and go seek with Benaiah which I thought was great.

Benaiah is finishing up his PreK schoolwork.  He struggles with writing but is learning to count. Overall, we have been busy and sorry that I have not posted.

working hard on school

Ellie, our new German Shepherd puppy I pray will sense seizures.

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.

Guess what?

Add caption

This guy who likes to help with everything is 20 weeks seizure free as of Valentine's Day! What a gift, I couldn't ask for a more perfect gift.

Wordless Wednseday

Let Brotherly Love Continue

Benaiah really, really loves his brotther Silas.  He waits for him to come home from school and at times begs him to play with him.  Last night they played Wii Boxing.  It was totally one sided as Benaiah had no clue what he was doing, which Silas loved.  Silas being the 4th brother usually does not win.  Benaiah was a good sport and they had fun.  Today they took out all the train pieces and made a track in the Living room.  I enjoy watching them together.

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