The Amazing Race

 Are you wondering what Bei and Nanette are so excited about???

His volcano erupted!

My life is feeling like I am participating in the Amazing Race on a daily basis. Here is my schedule on Monday's and Wednesday's. Get up at 6:00 a.m. get myself ready, get the boys up, feed them their hashbrowns and eggs, dressed and out the door by 7:50 a.m. Making sure that both boys have their backpacks filled with everything they need. For Kai that is an extra change of clothes and winter clothes to go outside, hearing aids in, epilepsy medicine taken and a bottle for after class.   Bei it is a lunch and winter clothes. Race to Roseville which is approximately 30 minutes to make Kai's 8:30 class. We then race back to Stillwater to make it by 9:00 for Bei's school. I haven't it made it on time yet, so Bei is racking up the tardy's which Bei's teacher spoke to me about.    This past Monday, as I was pulling into Bei's school parking lot, I yelled for him to unbuckle, get his back pack and get ready to jump out of the car as soon as we stopped. It was 9:00 on the dot, we raced up the backstairs and I shoved Bei into the class room where I met the teacher face to face, it is now 9:01 a.m. With excited anticipation, I asked , "did we make it?" "No, you are the last team in, you are eliminated from the race". Dang!!! Off to the office again for a late slip. I laugh because the office ladies always demand to know the reason why and no matter what I tell them they write the same thing "Ride Late". Duh!!! I suppose they could write "irresponsible mom" but they are being kind. Then I run home and clean the house and I am headed back to Roseville at 11:20 with a stop at Burger King because I know Kai will be starving. Then we race back to Stillwater to pick up Bei from his lunch period.

Tuesday is the opposite. We go to Bei's school first and then race to Roseville to make the parent/child class held from 9:30 - 10:30. From there we race back to Stillwater to make Kai's 11:00 speech therapy at Courage Center. We then race over to the school to pick up Bei by 12:00. 

 The good thing about being an older mom is that I know that everything with these kids is such a short moment in time.     Oh...but one thing that may help is that I am enrolling Bei into full day Kindergarten in February.


A New Day is Dawning

This little boy is changing this momma from a Type C- personality to Type A! 

I am breathing again.   Kai started school at Northern Voices last week and it went really well!   He absolutely loved it.   Today, we went for our parent/child day, where they teach me the curriculum, so that I can reinforce at home what he learns at school.   During the session I swore he said "car" and possibly "open".   Hooray for Kai Kai Sweetie Pie!!!  Okay, none of you would recognize it for a word but this little boy has gone from being totally non-verbal to babbling.   Alot of it has to do with him wearing his hearing aids for longer periods of time.  All that babbling just makes this momma's heart warm to the core.   The day I dropped Kai off at his school I was a little weepy but for a totally different reason than I was with Bei.   Kai I cried because I am so hopeful for his future now.   I am so grateful that N@rthern Voices took Kai since they are a private school they could have denied him.   There are other children with special needs at NV, but I've been told there is only one little boy who has more medical challenges than Kai.   I met that little boy today and oh my word, I can't wait for the time that Kai can converse with me like this little one did.  

We also received some really positive news from Kai's geneticist.   Last Friday he had a CT scan done to look at his ears and also an MRI to look at his brain.   From the beginning we have been told that Kai probably has a malformation of his cerebellum and that is why he walks around like a drunken little sailor (Ataxia).   Instead, Kai's brain is structurally fine!   There is no abnormality to his brain!!!   Ironically, the fact that his brain is not malformed means that we know less than we did before about the Ataxia and the epilepsy.  We don't know why he has Ataxia at this point, but the geneticist said there are more test that we can do.    However, it is a hopeful story that he can just continue to progress.  My little worker has already come so far!    Additionally we were told that his ear show no structural abnormalities either.   

This little guy is doing great also!  He had a very special weekend with his cousin Ben.


Waiting to Exhale...

Tomorrow Kai Kai Sweetie Pie starts school at Northern Voices.   It has been a long road getting there, but I am filled with hope and promise for Kai's future.  


Favorite Pictures of 2011

I am stealing this idea from other blogging Mama's.   These are some of my favorite pictures from 2011.   I had a limited selection since I only chose from the pictures from the new camera which I got in July. 


Pure Love

 This little boy is pure love and pure joy.

 He has challenged me physically, emotionally and spiritually in ways that I could never have imagined.

He has humbled me before God.

He has brought both tears and laughter into my daily living.

He inspires me by his tenacity to work so hard and accomplish so much. 
 He is my love and my joy!

*Note - The photo's are capturing Kai eating his first popsicle in August, 2011...quite a feat when you have Ataxia.



I love this picture of Kai Kai Sweetie Pie because this is what he looks like when he is making the mmmmmm sound for more.    Mmmm is the only consonant that Kai is using currently.
Cute picture of Cousin Katherine too!

I feel like Alice in Wonderland since Kai was diagnosed this summer with severe hearing loss.   I am navigating a world that I hardly knew anything of, the Hard of Hearing (HOH)/Deaf world.  Unfortunately, nobody holds your hand and tells you what the choices are and what the best decisions are for your child.   I lay in bed many nights and question my decisions, worry about what I don't know about the HOH world and wonder how my decisions are going to affect the future for Kai Kai Sweetie Pie.  Right now my focus is getting Kai a language and we have decided to enroll Kai into the N@rthern Voices program in January.  It is the auditory/oral program that doesn't use sign language in it's curriculum.   This is one decision that won't keep me up at night because we are really excited for him and feel that he is ready to make that next step forward.   We would be grateful for any and all prayers lifting Kai up to be blessed with the gift of language.