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.     


  1. Sounds like a PERFECT summer! Enjoy every minute with your adorable boys :D


  2. Give me a holler, I'd be happy to join you! And by the way, I am glad to see you back! I think it's a great outlet for you, and a wonderful way to chronicle your and the boy's journey! Besides you are a wonderful story teller... :-)


  3. Yea...I am so happy you are blogging again. This blog is a mechanism to educate others (including your sister) about loving and advocating for children with special needs. I have learned so much from you and I am extremely grateful. We all have the tendencies to get caught up in our own lives and don't step outside of our have unknowingly broaded my understanding of the needs of others. Again thanks for blogging and sharing your adventures, knowledge and your family. So much affection, Jeannine