Thursday, May 31, 2012


Bei recently out of the blue announced to me that he is the most lovable person in his class.

I think I found another person that agree's with him...Sophia.

He told me that Sophia is the second most lovable person in his class.

A game of Rock, Paper, Scissors can always determine who goes first.

When these two get together you can't wipe the smiles off of their faces. 

Sophia is one of those children that I LOVE having around, she is a joy!

Tuesday, May 29, 2012

7 Days of Eating

 Mr. Independent doesn't allow me to just plop him in his chair when it is time to eat.

 He always moves a chair next to his and climbs up on his own.

 Certain personality types have a cow when they see this kid who has the wobbles (Ataxia) standing on chairs by himself.   My thought is that he knows what he is doing and he has to figure it out himself.   Even if I tried to help him he would swat me away.  Did I mention that he is independent?

 Done Mom!

 Is Bei playing Wii without me???

Breakfast is GREAT! 

 Kai usually hangs on to his utensil while he finger feeds himself.   Having the wobbles (Ataxia) makes it challenging to hit your pie hole.

 This little boy is probably my best eater!

On days that I have to get something done in the morning then I let the boys eat out in the sunroom.  I call them cheat days.

One of my favorite bloggers  challenged readers to take pictures of the same activity for 7 days.   So you know how some mom's love their childs hands and feet, I love to watch my kids eat.   Bei didn't want his picture taken, so this is all about Kai.  I was able to get 3 different days of Kai eating.   

Saturday, May 26, 2012


Our friend Kaitlyn came for a week to visit with us and we had a wonderful time together.

We had breakfast at a local restaurant in Northern Wisconsin this morning.   After we sat down an older couple sat at the table across from us.  The woman looked at the boys and said how cute they were and then she looked at Kai and asked "is he mentally all there?"   Really???   This is the second comment out of your mouth?   I really don't mind answering questions about my kids, people are intrigued, I get that.  However, I would love for people to be more cognizant of the fact that my kids hear them and the questions that they ask.  

Peoples reaction to Kai's disabilities is so fascinating for me to watch. Children are the most unfiltered.  We have been walking Bei into school for 8 months, walking by or in Kai's case staggering by the same children for 8 months.   Not much has changed, the kids still stop what they are doing and just stare at him staggering down the hallway.   Some kids will come up and ask what his hearing aids are but most just stare.  One child was brave enough to ask me why he drools.   Oral motor delay is a hard concept to explain to a kindergartener, but I gave it a shot, "Kai's mouth muscles don't work as good as yours, so he drools."    To be frank, most kids are repulsed by his drool.  

Recently I witnessed an act of kindess toward Kai that brought me to tears.   I was talking to another mom and Kai was quietly playing nearby.   The other mom's 4th grade daughter began to engage Kai in play and as Kai played, his focus became intense and he started to drool rapidly.   Without any comment, the little girl  took the collar of his shirt and gently wiped the drool away.   It was one of the most loving acts of kindness that I have witnessed.   Afterwards as I reflected on her action, I realized that I am so use to kids being "grossed out" by Kai's drooling that her generosity towards my sweetie pie highlighted all the negativity that I have become so accustomed to expect.   That little girl named Stephanie, will always have a special place in my heart. 

I am going to approach Bei's teacher this week and see if I can educate the kids about Kai's hearing and his Ataxia.   They are curious and how else will they learn unless with address it with them directly.   I thought I could talk about the 5 senses and then about how to treat people that may seem different than they are.   Bei's classroom already spent two weeks learning sign language.  The kids were so excited each day to tell me what they learned.  I had given Mrs. Redmond several sign language books and she took it from there.

For the record and to the lady in Northern Wisconsin...Kai is smart but he is delayed due to multiple medical issues including an educationally signficant hearing loss.

Friday, May 11, 2012

More to Say!!!!

Tanya is Kai's speech Therapist at Northern Voices.  She is one of those rare people who is as beautiful on the inside as she is on the outside.  Tanya received a Cochlear implant about 2 years ago and has a hearing aid in the other ear.   She really understands how hard the kids work for their language.  She has been a God-send!

So I thought I was done blogging, that the story was told and that there wasn't that much more to say...  Well I was wrong!  There is soooooooo much more that I want to share and capture.   The main impetus to end the blog was so that I could print out the blog and have it in a hard copy format.   As I have been working on the blog books, I realize how important it has been to capture the lives of the boys.   I don't have time to scrap book and blogging is such an easy way to capture the memories of our lives. 

With that said let me update you on Kai.   He continues to attend Northern Voices and is doing extremely well.   He almost seems like a different little boy from 4 months ago.   His receptive language (what he hears and understands) has grown exponentially!  Matter of fact, he has met all of his goals in this area and his teachers created new goals for him.    He struggles much more with expressive language.   It is hard for him to talk.   Partially due to the fact that he has oral motor delay.  If you have noticed in pictures his shirts are usually wet or he may have drool around his mouth.   I recently took him to a feeding clinic at the University of MN to have him evaluated.   They said that he is using all his resources for his gross motor skills due to his Ataxia.   As his gross motor skills improve his oral motor will improve with it.   If you followed me from the other blog, you know how effective his braces are for him.   Well I am adding a new tool to help Kai Kai Sweetie Pie with his gross motor skills, it is called a Theratog.   It is basically a compression suit, think compression socks but full body.   I am really excited for him to have one because I have seen the benefits during his physical therapy sessions.
Another facet of Kai's life that has improved is the bonding that he and I have.   He is really letting me comfort him at night with just a pat or hug.   He still takes a bottle at night but he isn't as dependent upon it.   And have I mentioned that the green monster overcomes Kai Kai Sweetie Pie when I cuddle and snuggle Bei.   Kai gets mad and frustrated and tries to pull Bei off my lap.   Bei is so patient and kind to him.   Bei said to me the other day "I don't know why I said I wanted a little brother.   It is nothing like I thought it would be."   Of course, I had to ask what he thought it would be like and he said "I thought it would be like having a monkey".   Kai is more like a big gorilla than a monkey.    However, I am surprised at how non-aggressive Kai is because he really is a brute because of his lack of coordination.  None of it is intentional though and I always warn Bei to be careful around Kai because he doesn't always have control of his body.  

Bei holding the three week old kitten that we found underneath our deck.   I have the good sense to know that I don't have the time nor resource to nurse a cat to development.   I took it to our local vet and the vet tech fell in love with it instantly and wanted to keep him!  Hurray!  

Bei is doing great and absolutely LOVES kindergarten.   There are only 15 kids in his class and they all are really fabulous kids and they all get along very well.   I have had several moms that volunteer in the classroom tell me how transformed Bei is from the beginning of the year.   He went in as a super shy child who wasn't too sure about his new surroundings to a very confident little man.   He has struggled somewhat with reading, however the school brought in an English as a Second Language teacher and since she started working with him he has even volunteered to read in front of the class.  (BRAG ALERT)  We call him a math-alete because this child lives and breathes numbers.   He loves to talk about numbers all the time.  He wants to know how many days is 4 years and when it takes me a while to figure it out in my head, he encourages me and says "mom, you can do it".   He is already doing multiplication and will randomly say 4, 4's equal 16 or 9, 9's equal 81.   Sometimes he gets it wrong, but he will keep trying.    I feel that I can brag a little bit more about my kids because they are me his head for numbers is something that he received from his birth parents, similar to both boys being so darn handsome. 

Summer is around the corner and I don't have anything planned for activities yet.   Bei doesn't want to belong to anything and I am not encouraging it.   I rather have the time with him because my belief is that our kids grow up so fast and are out the door before we know it.   He will know when he is ready.   I would like to do swim lessons but we will see.  It may just consist of me taking the boys to the lake down the street with life jackets and us spending our summer at the beach.