Okay, I found out quickly that I really need to blog! There is so much that I want to capture and blogging is the best for me to document the boys lives. If you want to continue to follow our journey we will be at the following link www.chinesedumplingspart2.blogspot.com
at 10:18 PM
Kai Kai Sweetie Pie has emerged out of his cocoon a beautiful butterfly!
Bei continues to be joyful, fun and loving!
Well my friends and family I think it is that time that I call it "a wrap" and end the blog. It will be two years in April since we adopted Kai, so now is a good time for me to end it. Kai and Bei are both in such a good place, each growing and becoming the person that God meant for them to be.
I can't express to you how much fun it has been to write the blog. It brought alot of enjoyment to me. As a writer I knew that I needed to find my voice. How was I going to tell stories, what was going to be my theme, that type of thing. My two influences were Erma Bombeck, who I think of as a mom who saw life events with her children in a humorous light hearted way and the Seinfeld show which portrayed the humorous side of every day living. Believe me, I am not comparing myself to either one of those people, but I sure like the silly side of each and wanted the blog to be light and fun. I hope I succeeded every now and then in my blog posts to put a smile on your face.
I want to thank everyone who followed our journey over the course of the last 4 years. The people who commented on the blog have a special place in my heart. Thank You! To the 9 followers listed on the bottom of this page...thank you thank you thank you! The people that I don't know who follow my blog...thank you. It is humbling to know that people that don't know me at all would take time out of their day/week/month to read my blog. So Thank You! To my friends that have followed me...I am fortunate because I have the most wonderful friends in the world, thank you all so much! I want to thank both Dan's and my family and this means the extended family too - All of you people have been the most amazing support to our family! The prayers, the encouragement, the kind words the unconditional love for our boys...we are grateful that we belong to these two families. We are blessed!
Peace Out and God Bless!
at 8:52 PM
How does a 3 year old communicate when he has no language? Pulling, pushing, grabbing work really well for Kai Kai Sweetie Pie. (Kai's hearing aid is broken again...ARGHH!!)
The dramatic pose!!
The running like a gazelle!
The sheer fun of an early spring!
Enough with the braces already!!
I know I am going a little overboard on the picture of the braces but I have to share what an incredible difference they are making for Kai! The thing that I noticed most recently was that he doesn't curl his toes underneath his foot for stablity when he doesn't have them on. That is huge!!! It hurt me to see him walk with his toes curled underneath his feet and then his ankles bending every which way. Eventually he was going to hurt himself. The braces are doing more for him than I expected and the results are happening sooner than I thought. The other good part is that he falls far less than when he doesn't wear them. But the best part is he LOVES to wear them. The negative is that he wants to be the one that puts them on and then threads the velcro through the metal strap. And he doesn't want any help from anybody with a steady hand...oh no! So I am very patient with him and he gets to thread the braces because in all reality it is one of the best therapies for him.
at 9:31 PM
Joyful, Happy Bei Bei!
Sweetie Pie enjoying the 70 degree weather!
The protective older brother
Boys will be boys
Doesn't Connexin26 sound like a great hair product? Leave in hair for 20 minutes and your hair is thicker, healthier and shinier. Instead Connexin 26 is the gene that caused Kai Kai Sweetie Pie's hearing loss. The limited information that I know about this gene is that it is a recessive gene and both parents have to have this gene in order for their child to be deaf. Kai's birth parents probably did not know he was going to be hearing impaired. The only way Kai can pass his hearing loss on is if he marries a person with this recessive gene also. I was told that a protein is lacking and therefore the cochlear doesn't work. The good news is that the gene is not associated with any syndromes and most people's hearing remains stable. I am grateful that we know the reason why Kai is hearing impaired...knowledge is power!
When we adopted Kai in 2010, I have to admit that I was extremely concerned about how Bei was going to handle not having my undivided attention. Bei had been the center of my universe for 2 straight years and it had to be wonderful being the rock star! So, I just can't say enough about how gracious Bei has been about Kai and all his special needs and those needs taking me away from him to help Kai. Alot of adults could learn from this little boy about "manning up" and handling situations that do not turn out as planned. Bei has really been the unsung hero in many ways these past two years. Let me just tell you he is such a joyful, kind, loving boy with a huge heart and huge capacity to love. Yes, I am his biased mother but it really is true. Month to month Kai's development level just progresses and he is finally at the point where he is more consistently giving back to Bei. He is becoming his play partner, his friend. Today Bei and Kai played on the stairs choo choo ( I still spot Kai in case he falls), up and down the steps they went. Later on they danced together and Kai randomly would go up and hug Bei and try to kiss him. Bei told me that he isn't going to miss his friends at school when he is home now because Kai is his friend. As happy as I am for Kai's development, I am even more happy for my unsung hero Bei Bei Honey Bunch!
at 9:58 PM
This morning play time with Sweetie Pie
A little bit over a month ago I was anxiety ridden with the thought of Kai Kai Sweetie Pie going to school at Northern Voices. My inner fear was that he would be expelled...suspended the first week of attending. I wondered if they would be able to handle Sweetie Pie. What would they do if he passes out? Would they call me and say "We're done, come pick him up." It is a frightening thing to witness if you are not use to it. Sometimes he likes to take a bottle mid-morning and just cuddle...something that I neglect to tell alot of the "educators and professionals" in my life because they frown on the little man still having a bottle. Would they be willing to give him a bottle and cuddle him if needed? Or what if he started one of his inconsolable cries? Would they be willing to turn on music and hold him on their shoulder to soothe him until I got there? I should not have worried one bit because the teachers at Kai's school are phenomenal people . Kai has not passed out, nor needed a bottle or cried inconsolable. Instead he has grown and developed into a happy babbling little 3 year old boy. He walks around now and says "mom, mom, mom, mom". Now he isn't associating me with the word but at this point it doesn't matter. It really is his first word! God is Good! His only consonant is the MMM sound. In order for Kai to get a popsicle from our freezer he has to vocalize the word "open" to me. It doesn't sound like open but he does understand that it is two syllables. Every Tuesday I go with Kai to school for a parent/child class where the Deaf and Hard of Hearing (DHH) teacher teaches me the methodology how to teach Kai to speak and to listen. This past week, I wept as she had Kai demonstrate all that he has learned...I am amazed....I see a bright future for Kai. It is so incredible to be at that school and hear profoundly deaf children speaking! Not only speaking but speaking well!
I put another picture of the braces on the blog because I wanted to tell you how wonderful they are for Kai. The braces provide so much needed stability for him. Kai was doing an incredible amount of contortions with his body to stay upright. Everything from curling his toes all the way under his feet to using his neck muscles to help balance his upper body. The brace does the work now so Kai doesn't have to. I am increasing the amount of time that Kai is wearing them and the good thing is I think he likes them.
Lastly, an update on my Bei Bei Honey Bunch. He began full day Kindergarten on February 6th and he is doing super. Besides his teacher telling me how much Bei has come out of his shell since going full day, other mom's that volunteer in the classroom have talked about the difference they have seen in him. I think it is real boost to his self-confidence. Bei is also learning to be a really wonderful big brother to Kai. The two of them are engaging in play together on a daily basis. I feel so fortunate to be a part of both those little boys life. Lucky Me!!!
at 9:17 PM
The tiles and the odd "art piece" with the outlet in the middle was removed.
New sheet rock was added
A recessed light was added above
I am grateful that I have such a talented husband that he can tackle most Do it yourself (DIY) projects!.
at 9:30 PM
Kai with my friend Wendy. Do you like his new haircut?
Bei contemplating the "big wish" before he blows out the candles! He just turned 6 years old!
One of Kai's teachers sent me the story listed below and I thought it did a great job explaining how you need to shift your thinking when your child ends up having a disability. For us, we chose this route. We knew that Kai would have a medical special need, we just didn't realize he would have multiple needs and they would be life long...that is our Holland. We LOVE Holland and I am actually glad that we didn't land in Italy.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Welcome To Holland
Emily Perl Kingsley
©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
at 8:42 PM
I think Lucas really likes Kai's chicken nuggets!
Connecting with other mom's from NV's that have hearing impaired kids has been such a blessing to me. It is so nice to talk with others and hear that they went through the same struggles. I was talking to a mom of a child that has graduated from NV's and is now mainstreamed for Kindergarten. She warned me that hearing impaired kids some times do not have the same social graces that other children have because of their hearing impairment. She said that she is getting called by the school all the time because her daughter touches other kids to get their attention and non-hearing impaired kids are not used to be touched all the time. Great!! Let's just add one more thing"my list" of things to worry about Kai as he gets older...calls from school for touching others. Well the very next day, I was dropping Kai off at NV's and Bei has to ALWAYS go to the bathroom while we are there. I walked into the bathroom and looked and there was a man in bathroom! I stopped in my tracks, starting laughing and said "oh, I am sorry, I thought it was the women's bathroom". With that I looked at the door and it said, "WOMEN" He said it "It is the women's bathroom." Okay, I don't have much of a poker face and must of given him the "what the hell...???" look. He pointed to his little daughter and said "My daughter has to go to the bathroom." I realized once he spoke that this guy is hearing impaired. Both Bei and I ended up going to the bathroom with the man still in there. Kind of WEIRD... Oh brotherhood...is this the social grace that mom's are talking about??? Do I really have to teach Kai that you don't ever go into a woman's bathroom? However, I am going to give Kai the benefit of the doubt and assume that by the time he is in his 30's he will know not to go into women's bathrooms...
Bei started full day school on February 6th! He has handled it like a champion! I am so proud of him. I thought for sure that he would really give me grief about it, but he has done really well. He also recently turned six and all he wanted was a cotton candy machine. We bought it on-line, but didn't realize you have to buy the mix separately. So instead we throw 3 life savers in the machine and it makes the MOST delicious cotton candy that you ever had, while it spew's strings of sugar all over the kitchen. Honestly it is worth it!! I'll have to order the mix, but I bet it won't be as good as the Life Savers!
at 9:25 PM
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.
at 10:30 PM
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.
at 9:27 PM
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.
at 9:57 PM
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.
at 9:32 PM