Monday, January 31, 2011

Im still amazed at how our LOs touch others lives...(5/19/09)

Originally posted on BabyCenter on 5/19/09


We went to a friends mothers house last night to visit a bible group that had been praying for Kai when he was born(b/c of his heart)to grow and grow and then through his heart surgery. It was really great to see all these people whos lives he touched without them ever meeting him! And I got to eat a whole meal uninterrupted while they passed him around!


But in particular they had told us about a 5 year old little boy named Dylan. Every night when Dylan went to bed he would say his prayers and at the end would ask God to watch over and protect several people. Well his mom said the list became unbearably long and was taking like 5 minutes. She told him that he could just say all of his family and friends and be done. So the next night he would say his prayer, 'Now I lay me down to sleep...' and at the end asked God to protect and watch over all of his friends and family, and then quickly snuck in 'And Baby Kai.' He insisted that he HAD to say Baby Kai. So for the past 5 mos, this is how little Dylan has said his prayers. It touched and moved me so deeply that a 5 year old little boy would be able to think of others like that, especially another child he had never met.


I was so excited for everyone to meet Kai last nite, but especially Dylan. When we got there we walked around to the backyard and greeted everyone(mustve been 20-30 people there). And someone says, 'Dylan, do you know who that is?' He screams, 'BABY KAI!' He then runs over to be the first one to hug and kiss my little man! It is the single most touching thing I have ever seen a child do. It brought tears to my eyes and is now as I type this. It amazes me that a 5 YO has the capacity to love and care for others in that way. It also gives me hope that Kai will be accepted by other children as he grows up.

June 17th, 2009

One year ago today...

It was one year ago today that my husband took the phone call, behind closed doors because I asked him to, and came out with tears streaming down his face. I knew then our lives had just been divided into the proverbial Before and After. I knew that all the good times of Before were behind us now and all the struggles and hardships of After awaited us. Our outlook was bleak, but we would trudge forward and do right by our son. I had guessed he would be a boy, but what I had not guessed is that he would have Down syndrome. So I planned for a child that would never grow up mentally past a 5 year old, never play sports, have friends his own age and live with us forever.
 Then came the diagnosis of the heart defect, an AV Canal, which just furthered my belief of what After would entail. Our son would have to have open heart surgery at a very young age. So now I planned for all of the above plus a sick, frail child.


One year later, I cannot tell you how absolutely wrong I was. And if you know me, you know I hate to be wrong and much less admit it. But in this case I will make an exception. Little did I know that the After I so dreaded is so much more than I could have dreamed and hoped for and that our Before was actually very empty. Kai is 7 months old and the most amazing little boy you will ever meet. He is sassy and has attitude. He lights up a room and draws strangers to him, and boy does he put on a show! He is a mover and a shaker. He is a fighter and a winner. He is more things in his 7 months that I have ever been in my 35 years. He makes me want to be a better person, to slow down and smell the roses…or poopy diapers.



Our lives would not be complete without this little boy. I am so grateful for him and every last one of his chromosomes! I used to think, if it just happened a month before or after, he wouldn’t have this. But then I realized if it had happened a month before or after, we wouldn’t have him, and wouldn’t the world be missing out! A year ago I never thought I would ever be this happy, but here we are…and we wouldn’t change a thing.

Wednesday, January 26, 2011

Whole Heart Birthday

What is that, you might ask? Well, it is the celebration of the day that Kai had his heart repaired. Kai was born with a heart defect called an AV Canal. It is the most common heart defect found in children with Down syndrome, and is almost found exclusively in said children. He also had a Coarctation of the Aorta, but they werent real sure about that one until they fixed the first and ligated his PDA(another small heart issue).


Today marks the 2nd Birthday for Kai's heart. We are very fortunate that it was fully repaired on the first surgery, especially since he was only 10 weeks old and weighed in at 8lbs. He went into heart failure much sooner than to be expected, so rather than string him along trying to get his weight up, they did the surgery while he was small yet relatively healthy. It was all very unexpected. We went into the hospital because he was having some 'grey' spells. It was our second visit in 2 weeks. We had just spent 6 days at Texas Children's on the 15th floor just 8 days ago...and here we were back again. The next morning the doctors told me that Kai would have his heart surgery before we would be released from the hospital again, so within the next 2 weeks. A couple days later they came and told me his surgery would be the next week, probably Wednesday. Saturday night they came and told me his surgery would be first thing Monday morning...


But...there were so many things I still had to do. I was supposed to get pictures of him made. I had not had any professional pictures of him yet, and I wanted some before they hacked into his chest and scarred him all up. I had not had enough time with him yet. I hadnt read the books I wanted to read to him yet. I hadnt taken him to the places I wanted him to see yet. I hadnt told him 'I love you' enough times for him to know and remember that just in case. We didnt even know each other yet. What if? What if...


To this day I cannot finish that last statement. It is as if saying it will somehow cause it to happen, and I dont think I can even let my mind go there. I was so scared the night before. How do you squeeze in a lifetime of memories into one night? I dont know, but I tried my best...just in case. I stayed up all night. I held him all night. The closer it got to 7AM, the more I watched the clock, the louder the ticking became...every time someone walked by our room I tensed up because I was sure they were coming to take him and I was sure I would make a scene. Then it became clear and logical to me. All I had to do was remove his IVs, his NG tube, pulse ox, yadda yadda, pick him up and just walk out of the hospital with him. I would get in the car, drive him home, put him in his bed next to ours and we would go to sleep and not have to worry about all of this. Ironically enough, these were the true thoughts that went through my head, and they sounded absolutely logical to me at the time. Fortunately somewhere deep down inside I knew that was not in his best interest...so I sat and waited. I kept replaying in my mind the scene. Some large burly nurse would come in and take him from my arms and leave the room and I would be left alone in his room with all his things, all alone.


Surprisingly that is not how it went. We got to go with him to the pre-op area. We all rolled his big metal crib to the 18th floor or 20th, I cant remember, and went into the pre-op area to meet the surgeon. He was a very nice man. I had already been told that Dr H was the surgeon to have and that became apparent within minutes of meeting him. He told us he would treat Kai as if he were his own son, and I believed him. I dont know if he meant it or not, but I dont think even the best actor can get around a Mommy's BS radar when it comes to her children. They did all the pre-op stats and checked him over. Then the time came.


I dont remember how many of them there were. I think 3, maybe 4, pushing and pulling the big metal crib. Daddy and I walked out behind them into the hallway. We went down the hallway and took a right. Then the time came. A hallway on the left approached us. It said something to the effect of Hospital Staff only. I knew it was time. I still can not get through this part of the story without crying. The tears are already there even though I can hear him sleeping in his crib over the monitor...but it will probably be the most vivid memory of my son ever. It is the epitome of raw emotion that a parent feels for a child. And I am sorry if you arent a parent because you really really wont get this until you become one. The hallway came. Daddy and I stopped and the 'team' made a left. We watched them as the walked down to a double set of doors to what I can only guess to be the OR. Right before they got to those double doors to turn into them, Kai started frantically looking around. Left, right...and then he literally flipped his head upside down and behind him to find us. He made eye contact with me just before they turned the corner. I have never felt such anguish in my life. If Daddy had not been there to catch me I would have fallen to the ground. I collapsed into a heap on him and I sobbed. They just wheeled my life away from me in a big metal crib and that last frantic effort for him to see his mommy could very well be the last memory I have of my little boy. The pain I felt at that moment was and still is indescribable.


We went to the waiting room on the 18th floor, I think it was. We were the first ones in there. It was huge. It had several areas of chairs and couches and recliners, a whole area past that that was a kitchen with more tables and chairs to eat at, a full kitchen, food in it. Beyond that were showers and restrooms. Other families started coming in. We were all there for the same reason. This waiting room was just for families whose children were having heart surgery. We didnt talk and socialize much, but we gave each other knowing glances and timid smiles. Periodically they would come in and call a families name. They would take you into a private room and give you an update. These updates were lifelines...breadcrumbs. You would get one, come out all smiles and then just sit and wait for the next one. The waiting room was pretty full. As the day wore on families were called and then actually taken to see their child. How great that was to see. Except it was family after family...but we were the first ones in at 8AM. Why is it after 6PM and here we still sit? Was something wrong? Are they not telling us something? Its been a long time since we got the magic call to a private room for an update...finally someone comes. A Resident or Fellow or something...he tells us that the major issue was repaired, the AV Canal and the PDA, but they had to warm him up, take him off the heart/lung machine, restart his heart and then measure the aorta for the coarctation. There was one. It wasnt a bad one, but enough that the surgeon felt it should be repaired now rather than risk surgery again down the road. So the Resident/Fellow person proceeded to tell us that they then had to re cool the body down to whomp whomp whomp, whomp whomp whomp, yeah...because that is all I heard after re cooling his body to some ungodly cold number. It was in Celsius, so I cant be exact. The look on our faces must have been enough for Dr Fellow to realize he had divulged a little TMI. So, like a prom dress, he was off...


Finally, finally at like 8PM or something, Dr H, the surgeon came down to speak to us. The relief that washed over me followed quickly with panic. Was he supposed to come talk to us? Did something happen? But no, it was all OK. He just explained what he had done and that Kai had pulled through like a champ. We were ecstatic and relieved. It would still be an hour or so before we could see him though. They had to get him moved to CVICU and stabilized. That was OK. As long as my Bear was OK, I was OK. Finally, at 10PM, we got the OK to go and see him. I was so scared again. I was afraid he would be swollen and battered. He wasnt. He was still my Bear, just with some accessories. I could see past all of that and just see my little boy. The incision and scar I was so worried about I didnt even notice. I just wanted to look at his beautiful face. Its the first time I saw him not breathing 60 or more times a minute. His lips were so pink. He looked amazing. At that moment I really knew what we were dealing with. This boy was going to be a fighter. And he didnt prove me wrong. We went home 8 days after surgery. He did have Croup that was somehow missed prior to surgery, thankfully it didnt hinder his recovery too much.


And from that day forward he has been marching along...to the beat of his own drum. He does what he wants and how he wants, regardless of what the Drs said in the past and say today. He will be delayed, he wont grow well, he wont eat well, he will have deafness, he will be sick a lot...he will, he will, he will.


I will tell you what he WILL be...he WILL be anything that he wants, because that is what I expect of him. And by that, he will expect it of himself. He will still have his hardships and some delays, but he will achieve anything he wants with a lot of hard work, but that's OK, because the things in life that you are most proud of are the things that you really work hard and fight for...which is why he is the thing in my life I am most proud of...


Happy Whole Heart Birthday Bear!






That is all.

Tuesday, January 25, 2011

Tubes, Tonsils and Therapy

We went to the ENT yesterday because last week at the pedi she said Kai's tubes were out and he had/has an ear infection. So we started antibiotics and made an appointment with the ENT. Well the tubes are definately both out, so he will be having surgery to have them put back in and also to have his tonsils removed. Dr A said that they were a little inflamed and swollen which is probably contributing to the periodic apnea I hear over his monitor at night. Last surgery was tubes and adenoids and we were done and out of there in a couple of hours. With tonsils we have to stay the night in the hospital. Boo for that. I am glad that he will be having the surgery and staying at the Children's hospital that I work at, it adds a level of comfort. He also said he would be using T tubes this time and they should stay in longer than the 6-9 months we have been getting out of the other 2 sets. Which is nice seeing how I am still paying for the set that just fell out!


As far as therapy, we have feeding therapy today. Last week the therapist decided he needs two days a week of this instead of one. That makes me happy and sad at the same time. I am happy because I have been asking for help with his eating of table foods for almost a year now but I am sad that he needs 'more' a week. You really dont realize what you take for granted until you go through something like this. I never would have thought I would have to teach someone how to eat and that it would take over a year to do so. He has always done so well with all his other milestones motor-wise, but eating table food and speech has us stumped. Some days I feel like he will never eat anything other than purees and that he will never talk. The never talking really scares me. I cant wait to hear his first words in his sweet voice. I cant wait for the day we all sit down at the dinner table together and eat a meal together.


It really is the small things in life.


That is all.

Friday, January 21, 2011

Expecting the Unexpected

Oooohhh, its purple!!! You know what that means...


I found out in March of 2008 that we would be expecting a very unexpected addition to our family of two. Only having been dating for a year and a half, I thought, here we go! At first we were stunned, and then we were excited and giddy with joy.

We started the exciting life of OB appointments, baby registries and dreams for our child. I knew Kai would play soccer. And Daddy knew Camryn would be prom queen. At 17 weeks we got a phone call with the unexpected news that threatened our child would do neither of these things. A voice on the phone said, ‘I have the results of your integrated screening. And, oh my, I’m afraid the results aren’t good.’ I was told that our precious baby had a 1:5 chance of having Down syndrome and a 1:68 chance of having Trisomy 18. I felt ill. I fell to the floor sobbing, ‘Not my baby! Why my baby?’ I am only 34 years old. I thought the cut off for these kinds of things was 35 years old! We should be OK, this must be a mistake.


The next day we went to the OB and had an amniocentesis. We chose to have the amnio because Trisomy 18 is fatal. Then we waited for ten long days. By then, Daddy had convinced me that our baby had neither of these things and would be perfect. By then, I believed him. But I told him that Down syndrome would be OK, because our baby would live. I could handle Down syndrome.
Then the call came. Daddy went into another room and I reminded him to find out the sex of the baby. He was gone for a long time. I knew. I just knew that our baby had Trisomy 18 and more than likely would not live to see his/her 1st birthday. I was paralyzed when he walked out of the room with tears in his eyes. And he said to me, ‘Well, we got our little boy. And…he has Trisomy 21.’ As he collapsed into a heap of tears it took me a moment to realize that yes, I had heard Trisomy, but not 18, it was 21! I ran to him and told him it was OK, we would be OK, our SON would be OK.
Reality did set in later that day. And I was sad, angry and devastated. I was sure he would not play soccer and he would not go to college. I was so sure of a lot of things that he would never do. I asked Daddy was it wrong I wanted to change his name because Kai wasn’t a boy with Down syndrome. He said that was OK. We had a decision to make. We could raise a child with Down syndrome, but did we want to? I got my answer the next day at our first level II ultrasound. There was my son, my Kai, at 18 weeks, spinning in circles and dancing all around inside his mommy’s tummy. He was sucking his thumb. He was kicking. He was being a BABY. We looked into each other’s eyes at that moment and knew we had our answer. We could and we would raise a child with Down syndrome.
At 21 weeks we were given more unexpected news. Kai had a heart defect called an AV Canal, the most common heart defect found in babies with Down syndrome. It felt like another heart wrenching setback. And I told myself that we had better start expecting the unexpected with this baby boy. We were assured that this was easily fixed and he would be out on the playground with all the other kids. I started researching Down syndrome. The mistake I made was that I was researching all the health issues and developmental delays that our son could have. I was sad. Then I found the Down syndrome pregnancy board and Down syndrome board on Babycenter.com and my eyes were opened to a whole beautiful, promising life I didn’t know was possible. I heard about and read the book, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. I learned that my sadness was OK. I also learned to be happy and excited again. The turning point was when I realized my dreams for my son weren’t gone, they were just different, no better, now worse, just different.
The day came for him to be here. We went to the hospital. He was born without incident and was the most beautiful baby I had ever laid my eyes on. And his Daddy was right, Kai was perfect. He looks just like his Daddy. I have never fallen in love so completely and so quickly with another person. We had a short stay of 10 days in the NICU because of an infection(not related to Down syndrome) and then we came home. I fell in love all over again. He was just like any other baby, except he was much cuter.
Kai had his heart repaired at 10 weeks of age and we came home 8 days later. We have a few extra doctors’ appointments and we have occupational therapy every other week. I was told to expect delays with motor skills and eating and low muscle tone. But so far, we haven’t seen any of those delays. I know eventually we will have some delays, but I have also learned to expect the unexpected.
Kai is the joy and the light of our lives. His smile is infectious. Strangers walk up and talk to him all the time. We could not have been more blessed. We could not have been luckier. Our son could have had Trisomy 18 and our story would have been one of loss and sorrow. Instead we were lucky that he has Down syndrome and our journey with him has just begun. I can say today that I would not change a thing about my son, he is perfection.

Thursday, January 20, 2011

Why Upside Down?

This is to expound on my title. Yes, it is a play on words with the word Down and Down syndrome, obviously, but my first love of it is from a song. It is a song by Jack Johnson, who I absolutely adore, from the Curious George soundtrack. I had heard and loved the song long before I had Bear, but when I heard it again, I knew it was for him. Here are the lyrics:



"Upside Down"






Who's to say


What's impossible


Well they forgot


This world keeps spinning


And with each new day


I can feel a change in everything


And as the surface breaks reflections fade


But in some ways they remain the same


And as my mind begins to spread its wings


There's no stopping curiosity






I want to turn the whole thing upside down


I'll find the things they say just can't be found


I'll share this love I find with everyone


We'll sing and dance to Mother Nature's songs


I don't want this feeling to go away






Who's to say


I can't do everything


Well I can try


And as I roll along I begin to find


Things aren't always just what they seem






I want to turn the whole thing upside down


I'll find the things they say just can't be found


I'll share this love I find with everyone


We'll sing and dance to Mother Nature's songs


This world keeps spinning and there's no time to waste


Well it all keeps spinning spinning round and round and






Upside down


Who's to say what's impossible and can't be found


I don't want this feeling to go away




Please don't go away


Please don't go away


Please don't go away


Is this how it's supposed to be


Is this how it's supposed to be
 
ALL of those lyrics epitomize our life, and I could break it down for you, but I wont. I will just let you read our story and decide for yourself why that song fits our life with a child who happens to have Down syndrome.
 
That Is All.

Wednesday, January 19, 2011

Peeking into the Past

I have wanted to do this blog for a long time. Ive started it several times and just never kept up with it. I realized I have been pseudo-blogging on other social networking sites and decided that it was time for me to put on my blogging panties and start this project.


My intent for blogging is multi-dimensional. First, I really like to ramble on and on about how proud I am of Bear and all that he has overcome and all those he has touched in such a short period of time. Second, I would like to let people have a peek into our lives, specifically the life of a child with Down syndrome, to see that it's not bad or scary. In fact, it's much like any other family. We have most of the same ingredients, some a little different, but in the end we are all the same plate of cookies. Some are nutty. Im glad we are nutty. Third, I want this to be a memory-keeper for me and in the future, my children, of our whole family and our ups and downs and ins and outs.


Because I procrastinated a little(OK OK, A LOT...2 years...)I am going to be sprinkling in posts to fill in the blanks of the first 2 years. Some of them will be my mini-bloggings that I have littered FB and BBC with and some will be new entries pulled from memories. I really think those 2 years are so very important. I know I am definately not the same person now that I was then. I used to be pretty shy and quiet, not one to rock the boat. I have always been searching for that thing. You know, that THING...the thing that when you talk about it you get all loud and talk a hundred miles an hour, jumping on one leg, waving an arm, because you want everyone to know about it. You want everyone to experience it. You want everyone to love it. It's called Passion. I found my passion when I had my son. I didnt know it at first. It was a progression. So I do want to share our past with you while keeping you up to date in the present.


So, to be able to tell the difference between then and now, I will post those in a different color. We will do purple...because it's Kai's favorite color. Anything you see in this color is about the past. We will do a sample exercise for those of you that are visual or speed readers and only read every 3rd word.


November 12th, 2008 making his debut at 1315 and weighing in at


7lbs7oz and 19 in long, We are proud to present to you Kai Christian:
















That Is All.

Speech Therapy

Today was our first day of Speech therapy since we moved back to Texas. It is so nice to have them coming back into the home instead of driving 75 miles to therapy. Kai's speech is one of my major concerns. Mostly because he has none, and no other way to communicate. We are working on signing to start with because once he has the ability to mimic signing he will develop the ability to mimic sounds.



I hate that he is so far behind the ball on this. I am certain it is because of all upheaval and moving across the country and then back in an 8 month time period and during those 8 months circumstances were less than stellar. They were not conducive to any of his development, but I should have tried harder. It's just that sometimes you are stuck in your own place in life and cant move forward and unfortunately that affects those all around you. Since coming home he has blossomed, so I do feel better about that. He went from barely walking to walking all the time and from NO sounds to now babbling, etc. So it gives me hope.



And I know it isnt just mommy guilt. His evaluations in May and July of last year put him at about 14 months in Speech. He is now at 12 months. But I cant dwell on the past and I cant fix what has already happened. I can only move forward and make sure we do what needs to be done for him.



We are going to try some new things with Kai. We are going to find some things that are motivators for him. We will use those for him to focus on and we will show him the sign for it three times and then let him have it to play with for a few minutes. Then we repeat. Eventually we will do hand over hand with him before he gets the object.
Another thing we will try is a pictures. I am going to take pictures of his motivators(ie favorite toys)and we will show him the picture for it and when he reaches for it, he can have the item. Its a way to teach association of pictures of objects to actual objects. Then we will incorporate some signing into that as well.



Hopefully some of these things will begin to make a breakthrough with him. Its so hard to see him so frustrated because he cannot communicate with us, it breaks my heart. I cant imagine being trapped in my head like that. So, I better go get started on taking those pictures!


That Is All.

Thursday, January 13, 2011

23 + 23 = 47??

No, its not New Math.

The first gift I ever gave my son was an extra chromosome. Kai has 3 copies of the 21st chromosome, and it is known as Trisomy 21, or more commonly, Down syndrome. Now I am not saying that I caused my son to have Down syndrome. Nobody really knows what causes it, they just know that it happens during cell division in the very very early stages of pregnancy when rapid cell division occurs. My husband and I argue over who is responsible for giving Kai his extra chromsome. We both try to take credit for it, but it will never be proven. Unless you are a parent of a child with Down syndrome you probably wont understand that last statement.

This is what Trisomy 21 looks like:




This is the only time that people with Down syndrome are the same or look alike. They each have 47 chromosomes. A 'typical' person(someone not so special, like me or my husband)only has 46 chromosomes, 23 from mom and 23 from dad. But a person with Down syndrome has 47 chromosomes, and each one of them is an individual with strengths and weaknesses and feelings, just like you and I. This extra chromosome does not cause all of them to look the same. They do share some similar features, but often look more like their mother, father or other siblings than they do each other. The one thing I have noticed to be the same about children with Down syndrome is their ability to bring together a family or even a circle of friends and teach people about acceptance.

Kai is our first born child and he happens to have Down syndrome. When we first found out it turned our world upside down. After a period of time we were able to get our bearings and right our world. It was then that we were able to see the Upside of Down's (syndrome).

So this is where our story started, somewhere in 2008...and today we are a happy family of four. We were so happy and in love with our son that we decided to have a 2nd child right away. Her name is Lilah and she has 46 chromosomes and she looks just like her brother. We have learned to appreciate the extraordinary with the ordinary and that is what makes our family work.



That Is All.