My Hero!

Kai's name in Chinese means Victorious Warrior Coming Home after War.   We definitely gave him the right name because he is fierce, courageous, adventurous and is my little hero.  When I think back to where he was in April of this year developmentallyand emotionally and where he is today, his progress is beyond belief.  The turning point for his progress was when he was diagnosed with seizure disorder in late August.  As most of you know most of the children being adopted from China are medical Special Needs.  When we decided to expand our family, I have to be honest, we wanted a child that had minimal special needs.   We found Kai and he fit that criteria perfectly, he was 6 months old when we first reviewed his file and was diagnosed with external hydrocephalus.   External hydrocephalus is usually a bruise and small collection of fluid on the external part of the brain and is considered a benign condition.  It normally corrects itself by age 18 months.   We had Kai's CT scans reviewed by two separate neurologists and they both said there was no fluid and he appeared perfectly healthy.  What we didn't know was that he had undiagnosed seizure disorder.  In order for you to understand how far this little guy has come, I have decided to devulge more detailed information about Kai's medical issues. 

 

The first time I saw Kai, he was beautiful, smiley, and happy just like the pictures showed.  But something was amiss, something beyond his severe developmental delay.  He didn't seem as connected to his surroundings or me as he should be.  There were times that he seemed to be spaced out, his breathing would be shallow and he would turn blue, specifically around the mouth and eventually bubbles would come out of his mouth.  I didn't know at that time that what he was having was called Petty Mal Seizures.    As the weeks went by, Kai and I were bonding alot slower than I had expected.   I feel fully responsibility for that because if you remember with Bei I had these strict boundaries that nobody could hold, feed or comfort Bei.   With Kai that all went out the window.  I was jet-lagged, tired from lack of sleep, exhausted from the constant physical demands of carrying almost a quarter of my body weight and I now had two kids who both were physically and emotionally needy.  But I felt like it also had alot to do with this "spacing out turning slightly blue thing too".    In August Kai took a knock to his head, which turned out to be an odd blessing.   It appeared that the knock to the head heightened his seizure, which made the seizures much more tangible, something that I could actually video tape, which I did.   Remember, the saying "Pictures paint a thousand words", because they really do!   In my initial meeting with the neurologists I tried to describe Kai's seizures, but I felt dismissed by the doctor.   Unfortunately, Kai passed out during that visit with the neurologist and he totally focused on him passing out.   And I was like ya, ya, he passes out but that is not why I am here...there is something else going on here.   I left feeling frustrated and somewhat defeated.   However, for the second meeting I  went armed with video of the seizures and "wa la" Kai was put on anti-seizure medicine that day!   His seizures are considered generalized seizures which is more moderate than a petty mal, but not as severe as a grand mal seizure.   

   

Now here comes the best part...Kai changed almost instanteously with medication.    He is super independent, he is tenacious, he is smart, he is courageous beyond belief.  This week I put Kai in the car, it was his nap time and he was crying.   As I was driving I reached my right arm around my chair and lightly rubbed his foot.  He jammed his foot into my hand and stopped crying.  When I pulled my hand away, little cries would peep out of my little guy.  Okay, I will rub your foot my little warrior as I drive.  And to see his face light up when he is able to stand a few seconds without falling is priceless, he is so proud of his own accomplishments.   Watching him in his 2 hour therapy sessions every week is amazing.  I don't think any other child would have the tenacity and sheer willpower to work as hard as he does without fussing.   The therapist tell me he is going to be perfectly fine because he is so driven.  And he is!  Because boy you better not help him if he doesn't want it because he will rip his arm out of your hand so fast and will show you that he can do it himself.   I am so blessed to have this victorious little warrior in my life!!!!   

Uncomfortable Conversations...

Let me share with you a conversation that Bei has been having with me daily for the past several months; "Mom, I don't want to die" Bei will say in a pleading voice. "You aren't going to die, Bei." "I want you and me to die together mom" "Okay Bei, I already have told God and he knows that" (wink wink God...we really don't want this to happen) "Mom, why aren't you ever going to die?" (Oops...did I say that once?)
This is a conversation that we have daily and every angle I take at it won't seem to put it to rest. So this weekend all of us are driving in the car and Bei starts his daily dying conversation "Mom, I don't want to die." "Okay, Bei, you won't". "Mom, I want you and me to die together" Dan interrupts him and sternly says, "Bei that is enough, we don't want to talk about dying every day. I don't want to hear another word of it". I am grateful to Dan for stepping in and ending this exhausting conversation, but I start feeling guilty. I'm thinking poor kid just wants to understand dying and I don't know how to answer the question. I am going to have to think of a way to bring it back up to him so he doesn't end up in therapy over the fact that his parents wouldn't let him talk about dying, morning, noon and night. But I should not have feared...after about 5 minutes of total silence in the car, I hear Bei say "Mom?" "Yes honey?" "I don't want to die..." I guess the kid won't be in therapy after all...he is a persistent kid!

HGTV

If you ever wondered why you don't ever see pictures of the boys together, the top 4 pictures pretty much answers that question. By the way, Kai usually wins as you can see, he finally escaped!

The next picture is of Bei going to the state fair with one of his cousins Gina who we call Saint Gina because she is the sweetest nicest person you would ever meet. I gave each of the kids money to spend at the fair, so what does Gina do with hers? She buys a bunch of gifts for Bei and Kai. She is a very sweet girl!

Dan came home about two weeks ago and said he wanted to move...what? where? when?...now? Good Lord Dan don't you think we have had enough changes in our lives in the past two years??? We built our house as newly weds so we have been here a very long time! To get our house ready for sale, I went into Project Management mode and came up with a three-pronged strategy; fold the unending piles and piles of wash that refuse to fold themselves, second - throw as much junk into the dark recesses of the nearest closests and then clean the house like it has never been cleaned before. It seemed like a reasonable approach to me, however since I was feeling overwhelmed I called my super-organized, workhorse, friend Terrie and asked her if she would spend a day with me getting my house ready for sale. So Terrie comes in and she starts pulling everything out of my kitchen cupboards and I mean everything! Uh...Terrie, there is alot of work to do, let's get folding and hiding the junk. Nope, she said that we need to declutter, organize and clean the kitchen, starting with the cabinets. Uh...isn't that where we are going to be hiding everything??? Wrong again! She informed me that people will be looking in my cabinets to see the amount of storage space. I call my agent and she confirms Terrie's message to me!!! For a non Type-A person like myself I think this is crazy-talk! I'm starting to hate the TV network HGTV, which I believe is the culprit of all this "showroom house" madness. Why can't people all accept that we all live in our houses and there is clutter, dust and unscrubbed toilets? Oh how I am missing the old days right about now. I can see how the first call from my agent is going to go; I will be putting the final touches on my Broccoli, Cauliflower, Onion and Cabbage soup, when I get a call from the agent saying they will be here in 10 minutes to show the house. It may look like a "showroom" house but it definitely won't smell like a "showroom" house!

Preschool Trauma

Bei and his "villianous" teacher! Actually, we feel very blessed to have her as a teacher she has a passion for children and it just exudes from her.


Perhaps this blog should be titled "Preschool Melodrama." I took Bei to his first day of preschool on Tuesday of this week and it was all going well until it was time for me to leave. Bei started crying and didn't want me to go. Somehow I dug down really deep and was able to walk out of that school and leave my crying son in the hands of his teacher. I have to admit that I didn't cry...I SOBBED all the way home! It was the most awful thing that I had to do. As I drove home I decided that I was going to form an organization with the Acryonym MAP and it stands for Mothers Against Preschools! It was going to be a revolution that will sweep the country, rallies would be held everywhere! This whole concept of children being taken from their mothers by these villianous preschool teachers at the age of 4 was just ridiculous in my mind! However, I got home and I spent the next 2 hours cleaning the house and having one on one time with Kai Kai Sweetie Pie..hmmm...maybe, just maybe, this 2.5 hours, twice a week thing where those really NICE ladies watch your kid is a good thing??? Well Bei did not like school at all and spent the night in near tears telling me how he did not want to go back. It broke my heart and I told him not to worry about it that we would figure out something. In the meantime I receive an email from Bei's teacher that says Bei settled down within 10 minutes, enjoyed painting with marbles, made a new friend named Easton and was very verbal asking lots of questions throughout the 2.5 hours that he was there. I question Bei and he told me all the things that he liked about school...so there is hope! We went back today and there were tears by him, not me, and lots of smiles when I picked him up! So you may wonder what made a wimpy mom like me able to walk out the door when my baby was crying??? I am trying to avoid the scenario of Bei attending his prom when he is 17 years old and someone saying; "So who is that old lady with Bei and his date?" "Oh her?" "That's just his mom, she goes everywhere with him". As much as I would like to attend Bei's prom, I think I owe him a normal childhood. Therefore, I will do my part of starting to tear at the apron strings a tiny bit.

Little Miss Large and in Charge!

"Large and in Charge" is what I called little Miss Anna who came to visit this past week. She is a 15 month old pint size dynamo who wanted to dominant Kai! She came in on Monday afternoon and she swatted Kai, she tried to bite Kai, she kick Kai and then next she would kiss Kai and then hug Kai and then back to the agression again. By the way, she did this all with a smile on her face like it was the most natural thing in the world. What did Kai do? He swatted his hand at her like she was a fly, and wasn't fazed by her at all. This cute little dumpling is Kai's youngest cousin, my brother and his wife's "oops" baby. But there is nothing "oops" about her, she is pure JOY and LOVE. As you can tell I was smitten with her and wished we all lived closer because she made me laugh alot.

We are all seeing a big difference in Kai since he has been put on his anti-seizure medicine. This week alone the neurologist increased his dose and in that I can see even more improvement. The way I say it is he seems more "bright eyed and bushy tailed". Tonight he and Dan played with a ball and we both saw a side of Kai that neither one of us has seen. He belly laughed for a half an hour straight, Dan would throw the ball softly into Kai's stomach and Kai would throw his head back and laugh really hard. If you have not met Kai it is hard to explain except to say you can tell things are connecting better for him. Another great update recently was that Kai is truly starting to crawl. I was so grateful that Dan's parents and brother Mark and Gina were able to witness his first crawl because they have been so incredibly supportive of Kai. I am also grateful for my sister Nanette because she came and helped with the kids during some difficult doctor appointments and then gave me a much needed reprieve by letting me run errands and even getting a pedicure! Both of our families, along with our friends have been so supportive and we really appreciate it! I get the sense that everybody is rooting for this little boy. I also have to Praise God because I promised Him if he would help get Kai diagnosed quickly I would give Him all the Glory. I believe that prayer is really powerful especially when it comes to children. God hears us!

On to our other little man and what a little man Bei is developing into...confident, loving, kind, funny and just the most well adjusted kid. Next week he starts school! Yikes! I already warned him that I'm going to cry. And we all know that is because I'm NOT well adjusted! The good news is that I really think he is so ready for school and he is very excited!

Lastly, I need to share some great news with all you prayer warriors out there. At Nick Nick's last doctor appointment they flew out to New York fully expecting that he would need Chemo treatments again, but the doctor had good news. He said "the tumor was all but gone". Yeah! Please keep him in your prayers!

Kai Kai Sweetie Pie

Doesn't Dan looked Terrified of that fish??? This was Bei's first fish that he every caught and it was all on his own! He loves to fish!

Yep, that is what we call our little guy "Kai Kai Sweetie Pie." The first 1,000 times I said it he would giggle and do his Irish dance for us, but now he looks at me like "come on lady come up with a new one." Well our little Kai Kai Sweetie Pie is always keeping us on our toes. Most recently he was diagnosed with Epilespy or now they call it Seizure Disorder. We are in the midst of many doctors appointment, EKG's EEG's, and therapy. I actually have a funny blog written in my head about all that we have gone through with Kai from the very beginning, however I won't be writing that one because I'm feeling much more reflective and sentimental today. I feel so incredibly grateful to God that I was chosen to be Kai's mother and that He has that much faith in me to take care of this very precious and special child. This little gift from God that was abandoned at birth, left for 14 months with apparently very little physical contact, who could not hold his head up, lift his arms, grasp my finger, babble, passed out at the drop of a hat and had epileptic seizures. I feel very honored and blessed to be his mother. I just LOVE him sooooooooooooooooooooooo incredibly much!!! His special needs seemed to have bonded us even closer together. I wanted to share with you a writing by Erma Bombeck that my friend Becky gave to me and I think it pretty much covers every mother regardless if the special need is a learning disability or cancer. We have all been chosen to parent the children that we are given, give your little one or big ones an extra tight hug today!

THE CHOSEN MOTHERS By Erma Bombeck Most women become mothers by choice, some by accident, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard." Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy." "But, Lord, I don't think she believes in you." "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

Kai Update

I want to shout from the roof tops because I am so excited; Kai's development has really taken a leap forward.   The first thing that happened is that he can know sit up from the lying down position...that is huge progress!   He will scoot around a little when he is sitting to play with his toys.  He also is standing up by hanging onto furniture!  And is trying to walk when you hang onto his hands...imagine Frankenstein's first steps.  Plus, he now is holding onto me when I hold him, so I am not carrying around a 25 lb sack of potato's.   I sure hope I don't lose my pipes that I have developed by carrying him.   And he is now babbling up a storm.  Now we just have to work on his sleep issues...please pray!  

 

Again I request that you lift our little buddy Nick Nick up in prayer.  He is having another go around of treatment today because the last Chemo treatment was not effective.   They are really in a battle to keep his sight since he is already blind in the other eye.