Christmas 2011

 The kids had fun decorating cookies at Aunt Julie's house on Christmas Eve.

Uh oh...what does my handsome little boy have in his hand???   It looks like one of Auntie Julie's beautiful glass ornaments!   Julie are you down an ornament???? 

 Bei would love to have older siblings...he just loves the attention that he gets from his cousins.  Elly and Bei had fun racing down the staircase together.

Let me tell you...it is embarrassing when both your father and mother in law can work circles around you.   I have never met two people who work harder than Bob and Rudene.  Dan came by his strong work ethic honestly.  Hopefully, he can instill that type of work ethic in our kids.  

 Here is the Engineer and the Scientist together.  Since Bei wants to be a Scientist Grandma and Grandpa bought him a bunch of science project kits and a microscope.   Bei was proudly listing all the planets to me today;  Jupiter, Saturn, Neptune, Mars, Michigan... 

Here are my two little Scientist in the morning working on a cooking project.  Bei is really making our pancakes for breakfast. 

I couldn't leave out my favorite little Nemesis, Elvis.   His most recent terrorizing of me is puking in my van and chewing all the DVD wires so that the kids can't watch movies in the car any longer and eating about 20 ornaments off of the tree before I realized what was going on.  I hope at least he got a little bit of a zap when he chewed through them.   Don't worry, I love the little guy but he drives me a little crazy at times.     


My Kids Wear Clothes...It's A Rule!!

 These are pictures from this summer.  Playing mini-golf in Hayward.

I'm responding to both Becky and Jeannine who commented on the last blog post about my unclothed kids.  The funny thing is that I have a rule that Bei has to wear at least what we call a "daddy shirt" which is a white t-shirt.   But as you both know, I am not a very good rule follower.   Luckily, Bei is a real rule follower and wants to make sure that he nor I break the rules.    Sometimes when he goes on Wii he ask me to turn on the timer, so he doesn't play too long.   If I tell him to stop doing something or I am going to punish him we get into a very lengthy discussion about the specifics of the punishment.   He will want to know the what, how, who, where, when and by the time we are finished discussing it he definitely is not doing the behavior that deserves the punishment.   I once gave him a punishment of not being on the computer for the day and he said "mom, that is not tough enough, you need to do like 4 days".   Okay!  4 days it is!   He is definitely a kid that likes to please his parents with good behavior.  Which reminds me that we got Bei's report card this week.   I showed it to Dan when he got home from work and this is what he said, "Honestly Liz...6 absence and 8 Tardy's!"   Make that 9 Dan, the very next day we were late!!!   Luckily, I have a special needs kid and can throw that card on the table.   I go to the office and they look at me and I just nod towards Kai and give them the look and they write "Ride Late."   Come on! Why can't they write "screaming insane inconsolable child in the morning" or least  "little brother had gas".    So every year I have the same New Years Resolution;   Don't be a back seat driver   Now my new  New Years resolution is no tardy's beginning 2012.   It would make my little rule follower very happy...except on Mass days, he always wants to be late. 

Kai Update;  Kai walked downstairs repeatedly by himself, one foot after the other.   I have to give Dan all the credit because he was playing with him on the steps and he had the confidence that Kai could do it without his assistance.   He probably went up and down the steps 40 times...by himself!   This is HUGE!!!   Stairs have been a problem from a safety point of view.   Balancing on one foot to reach your other foot down to the next step is extremely hard for a person with Ataxia.    That little boy is such an inspiration to me!   'For Kai there are no problems, only solutions'.   Love that little boy!!! 


Scattered Pictures

Do you see the little fence made of toys that Kai built for himself?   He loves to play in this corner with the teddy bear behind him and then close himself in with the toys.   You can see his little buddy is in there with him.

 I really didn't know much about this Elf on the Shelf phenomenon, except I kept seeing people post comments on face book.     My sister Jeannine bought this for me for an early Christmas present!  So when I was explaining the story to Bei about how the Elf has magic powers and flys to the North Pole every night to report back to Santa, Bei's eyes just got bigger and bigger and he was busting at the seams with excitement!   I am so not a poker face and I cracked up laughing...his excitement was just so cute.   Dan pulled me aside later and jokingly said, "Gee's Liz, why don't you just tell him there is no Easter Bunny or Tooth Fairy while you are at it".    He still believes because he is so excited every morning to see where the Elf has landed. 

And let me tell you that little boy does believe the Elf is magic because he is fleecing me out of a lot of money every night.   Bei had $.30 cents in change and told me that he wanted to put it under his pillow to see what happened.   I couldn't disappoint the little guy so I changed the $.30 to $3.00 and it came with a note from the Elf saying how proud he was of Bei's behavior, etc, etc.   Well we are on night 4 of money under the pillow and the Elf is going to have to break the news to this little boy that he isn't going to be getting money every night for the rest of his life.   Tough job for Elf to do, hopefully he is gentle about it. 

Did I share with you that Bei wants to be a Scientist?   Yeah for Bei!   We have been spending alot of time "experimenting".    We have made homemade fingerpaint, that actually turned about beautiful, homemade clay and we made chocolate cookies without eggs, just to name a few things.   If you ever need a homemade weapon, make the cookies without eggs, they are as hard as rocks. 

Here is some of the homemade fingerpaints

Kai likes making clay too!  Maybe he is going to be a scientist too! 
P.S.  Tomorrow will be 7 straight days of Kai wearing his hearing aids from morning until bedtime...excuse me while I go knock on wood!  


Denied Again!

Is there anything more precious than sleeping children?

We found out today that Kai was denied our second request to go to the public Deaf and HOH school.  In the first meeting I didn't really understand the dynamics going on in the room, but this time the Deaf/HOH teacher came and she laid it out on the line.  She said, that they don't feel that they can accomodate him at this time.  They said, the room is too crowded and the classroom is geared towards 4 year olds.  They are willing to consider him in the fall when they move to a new building which will be in the town that we live in.   What my school district is offering me instead is 2 afternoons a week, where Kai will be in a pre-school setting at an elementary school.    He will have a special ed teacher, speech and Deaf and HOH teacher.   They will also provide him PT and OT services.   Additionally, they will install a sound system for him which will amplify the teacher's voice.    I told them that I would need to come and evaluate the school before I agreed to it.   The pre-school is new and won't start up until January. 
In the meantime, we are still considering the private school that costs a bundle.  I am going to go look at it again on Monday.   We are looking at going only 3 days a week and if he went for a full year, for only the 3 days it would cost us over $19,000 a year.   Once he moves out of the toddler program the cost raises to $30,000 a year.   OUCH!   Some school districts pay for it but ours won't without a fight.   At this point, I am not stressing about it because I believe God has a plan for him.   I just need to watch it unfold.  

I wanted to share with you some good things that are happening to Kai.   He is going to be fitted with braces that will fit in his shoes and go up to his ankles.  YaHOO!!!!!!    As a reminder, Kai has what is medically defined as Ataxia.   I call it "Drunken Sailor Condition", but it really is a balance issue due to malformation or trauma to his cerebellum (base of skull).   I have been really concerned about Kai's walking lately.   He falls ALOT!  He walks around with his toes curled under his feet and/or he walks on the side of his feet and/or the balls of his feet, he hyper-extends his knee's.  He is doing everything within his power to compensate for his balance issue's and to walk.   He is such a hard little worker!!  Anyway, I am excited that he will get fitted for braces because he needs the help.   The physical therapist warned me that he may need to learn to walk all over again, but I am okay with it.   

Also, we got Kai's hearing aid back from the audiologist and he has been a champ about wearing both of them.    Tonight we were playing basketball down in the basement and I told him to sign me "more" before I would give him the ball.   Instead, he put his lips together and said "mo"!!!!  That is better than any sign he could give me!   Bless his little heart!

Lastly, I wanted to share with you that I was able to visit with my family down in Chicago.  We flew down on Friday and came back on Monday.   It really did my heart, my spirit and attitude good to be with my family. 


Kai Kai Sweetie Pie Update!

 The best way for me to get Kai to wear his hearing aids is to turn on music.  He loves the Einstein Playdate (I don't even know what it is called and I am too lazy to go look right now) and Raffi the best. 

 A dance party usually breaks out once the music starts.

 Kai is down to one hearing aid because one of them is not working.   It has been a week since he has been without it but I hope it comes in tomorrow.

 The big news of the month is that effective November 20th...Kai has been seizure free for 6 months!!!   The longest he has ever gone without a seizure!   It would be a blessing for him if he grows out of having seizures.   By the way, Kai's latest dance move is dropping to his head in the tumble stance. 

Bei loved doing the tumble dance move too.  

I was hoping to have an update on Kai's schooling.  I have heard "unofficially" that the public Deaf and Hard of Hearing School is willing to take him.   Previously,  they denied him because of his physical needs and they said they wouldn't be able to provide him the Physical and Occupational Therapy that he needs.   (I am not even asking the public school to provide him with those services since I take him to private therapy.)   According to my source they said they would find services for him and bring them in house for Kai.  Well I won't turn down any service for him.  Anyway, this is a totally different tune then what I heard before at the first meeting.   One of the members on Kai' child intervention team went and advocated for him.   She has an "in" with that school and she has a soft place for Kai.   I am so lucky to have her on my team and advocating for Kai.   Now the sticking point is getting my school district to agree.  As much as I don't want to be away from Kai, I know that he needs more services than I can provide.   We are however starting to use sign language.   Kai not only "signs" up, but he will say "uh, uh".   I feel like he is really starting to make some huge strides in his development.   I realize the kids look a little ragtag in the pictures above but I wanted to share their joyful happy spirits.    I am so lucky that I have two very naturally happy kids!!