Friday, March 22, 2013

Came and Went

Well, World Down syndrome day came and went. It is a day we recognize but dont go all out for, like Presidents Day I suppose.

I did order the boys and I some shirts this year and we wore those, but Kai still had to go to school and feeding therapy and I still had to clean house in between feeding my ever growing boy, Peter!

So I will just leave you with the pictures of us in our shirts; unfortunately we didnt get one all together because that is usually impossible!

The boys shirts says World Down syndrome day 3.21 EVENT STAFF, and mine of course says, I never knew I wanted a child with Down syndrome until I was given one!








Peter wasnt being very cooperative so only made it into 2 shots

Happy Friday!

Monday, January 7, 2013

Gotcha Day ~ 1 Year Later And the Long Awaited Video of our First Meeting

Навсегда семьи

Last year on January 6th, 2012, we finally reached what we had been striving for for almost a year.

It was Christmas Eve in Ukraine, but more importantly it was we what Forever Families  refer to as


DAY!

We didnt know if we would be able to actually get you that day. There is so much to do. We had to go and get what is referred to as a red passport, which is done while you wait, then we had to to go get your birth certificate, which they did right then and there too...then we had to go to the bank and empty out your bank account that every orphan has. Technically we could do what we wished with that money. A lot of people said we should have kept it, but to me that is just wrong. It was not your fault that you lived in that Baby House for almost 5 years. Taking that money was like taking money from the mouths of the numerous children we saw every single day when we came to visit you. They would look up at us with pleading eyes and say 'MaMa? PaPa?'  Heartbreaking.

We really did not think we would get to take you with us that day...the dark blue looming door staring at us, telling us no...



But by some stroke of luck, we were able to take you home with us that night. It was glorious. It was a little scary riding in the car with no car seat!

                                         

You have changed so much in a year Peter. You dont throw toys or beat them on your head, much. You can say Ball, MaMa, EAT EAT EAT EAT every 30 minutes, PaPa and Neigh. You are close to walking. You weighed 24lbs when we brought you home and were in 18 month clothing. You now tower over your brother and weigh more than he does. You are amazing.

We almost lost you in Ukraine. It is a story that I will soon tell. I just havent found the words to convey the betrayal, corruptness, lies, fear and misery we felt mixed with the emotions of happiness and joy. We truly did not think we would get you until you were in our arms and we were on a plane back to Houston.

Mommy and Daddy love you with all our heart. We are still so terrible sad and heartbroken that Ty could not come with us...and Mommy will tell that story soon.

In the meantime, it has been over a year and only a couple of people have seen the videos from the first time we met Ty and then you. I couldnt bare to play them...I think of him daily, and I am grateful for you. We almost lost both of you.

So Baby Boy, Happy Gotcha Day!

We have never publicly played the video of our first meeting with Peter, so we thought it was time.

video

Although Gotcha Day was January 6th, we met Peter on December 6th. He was beautiful and everything I imagined him to be...except for the empty shell he appeared to be. He no longer is that empty shell of a boy. He laughs when the wind blows in his face. He snorts at his therapists. He screams out in pure glee riding in the car for no reason.


Let us not forget another little boy from December 6th. Although that day began full of joy and excitement, it ended hours and hours later in fear and tears and a loneliness we had never experienced. The story is still too hard for me to tell, but I am getting there. But I do want everyone to remember our other son, Ty, that we also went over for and met that day. I know many of you think he was adopted by another family before we got there, but that was not the case.


The loss we felt just on our 3rd day of a six week stay made Christmas and New Year's very difficult and made the miles between us and our other 2 children that much more difficult. We did get to meet Ty that day. We met him first in fact. He was so full of life and so tiny and beautiful. We instantly bonded with him as well. We even signed all the paperwork with his new name and had it notarized and taken to offices that would send it to Kiev to await for our court dates for both boys. We in fact had already paid the fees for both boys. By all rights, we were legally committed to both of our children. We learned later that night or next morning, depending on who you spoke to that we would only be bringing home one of our children.

Little did we know that brief meeting of holding, hugging and kissing our son would be our first and our last. That is the reason we have not shown the video footage, but I feel it is time to share with everyone. Adoption is a beautiful thing, but can also be heartbreaking...even terrifying...presumably what happened to us was very uncommon, but I have doubts, strong mommy doubts. But I feel the world deserves to see what a wonderful little boy he was, and hopefully still is.

I also want people to know that the comments of 'Well, arent you glad you didnt bring 2 home with all that happened this year?' No, we are not glad. A life is wasted and lost and I would have taken on ten times more issues this year to save our son. That is like telling a mom who has twins or triplets and one dies, 'Well, at least you still have one or two...'  They are not disposable. They are not replaceable. They are children who have already been thrown away and they deserve parents and love just like any other human being, regardless of if things get a little tough. You dont know tough until you have seen where these children 'live'...a better word would be to 'exist, survive, waste away, treated in ways you could never imagine...so NO, We are not glad. We miss him every day and we will always love him. We will never know what happened to him, but at least we know how it felt to hold and kiss him and maybe for a brief moment he felt a glimmer of love.


So, here is our meeting with Ty...to not realize the first time you hold your baby will be your last is one of the worst feelings you will ever know...but we are glad we were able to tell him we loved him.




















Sunday, January 6, 2013

Updated pictures of Kai after SJS

Many people have asked how Kai is. Kai is super. Kai is great. Kai is my hero. How that little boy went through what he did and looks as beautiful as the day I first laid eyes on him is nothing short of a miracle. He has NO scarring. He has NO vision loss. He has NO scarred over sweat pores. He has NO photo sensitivity to light. No dry eyes. No permanent lung damage. He is simply amazing.

I have received many questions about SJS, Stevens Johnson Syndrome and TENs, Toxic Epidermal Necrolysis...I am not a DR. I can only give you my experience and tell you our story. That is why I posted the pictures of the progression of the rash. If you even suspect that your child may have this, take them to a physician immediately. Kai's airway closed up within 36 hours requiring a breathing tube and ventilatory support for 9 days.

So enough rehashing that terrible illness and more on his miraculous recovery. We were told that every day spent in bed would take 5 days to regain his strength. He was in bed for nearly 3 weeks or more. 2 of those weeks completely sedated and paralyzed with drugs and being fed with TPN and lipids because even his gut motility had stopped. He lost so much weight his diapers leaked at the leg elastic. So, 3 weeks in bed times 5 days to recover for each day, 15 more days?! We came home on Ativan and Methadone because he was on so many pain drugs that we finished the weaning process at home. Who ever dreams of giving their 3 year old Methadone? The first day home he was very very angry that he could not even stand up. Not only did he have being in bed for that long against him, he also has Down syndrome that lends to lower muscle tone and loose joints to begin with...

It was very difficult to watch him become so frustrated and cry because he could not even stand up. This is a little boy that goes from the moment he gets up until he goes to bed, no nap included. He is also a very determined little boy. The second day he managed to stand up for about 10 seconds before tumbling down on his rear. This also pissed him off.  So he decided on another tactic. He spent the entire 2nd day at home cruising the couch. He would go back and forth. Then he ventured a little further. He took two steps from the couch to the ottoman! He was so excited and proud of himself. Of course he then assumed he could just take off from there. Wrong. Again, pissed off.

So, then he went to the farthest end of the ottoman and walked as many steps as he could, over and over until he finally reached the edge of the couch. I would say that is about 8 or so steps. Second day out of the hospital, a month stay in the hospital. So he did that all day. Then he practiced standing from sitting in the middle of the floor. He did all of this on his own, no prompting or help from us. I was sure he would be walking within a week or two!

The third day we got up, did our daily morning routine and he was at it again. Around noon I noticed that I didn't see Kai anywhere. I was instantly panicked! What if he fell and hit his head. What if he was having a seizure from withdrawals...what if, what if, what if?! I couldn't find him anywhere downstairs.

Then I heard a slight thump above my head. Surely not. But the other two kids where right there with me. I raced up the stairs and there HE was....in the middle of his bedroom playing. He climbed the entire flight of stairs all by himself and was going from room to room upstairs playing. He was happy as a lark.

So, yet again, my son with Down syndrome taught me another lesson. If you want something bad enough you can achieve it, and you can achieve it on your own with perseverance. And NO Whining. That extra chromosome really is something more special than any of us realize. Survival of the fittest...

So, enough of the story. I will now post some pictures of what Kai looks like today. He went into the hospital June 9th, 2012 and came home July 2nd, 2012. I would also like to once again thank each and every person who contributed in any way, from prayer, to cards, to meals, so so much....I can never ever thank you enough but know my gratitude is endless..

So without further ado:

This was the day we came home July 2nd


These next 3 photos were a week or two after we were home when my Best Friend Christie came all the way from Indiana to meet us and our very very good friend Anna drove from Austin to spend the day with us.





These next photos were taken by Eric Forsythe of Forsythe Fotography in November 2012








Here Kai is pushing his brother, Peter, and Lu is helping pull the wagon






Goofy as ever...just last week



Telling Santa ALL about it...



So there you have it. My boy is a miracle. My boy is beautiful. Even if he did have scars, he would still be beautiful...because he has a heart of gold(I asked the surgeon to put some in there when he did his heart surgery at 10 weeks old!).

New Year's Resolution

I'm going to be honest. I suck at these. I guess because if I make one and don't accomplish it I feel like I have failed. I have enough Mommy guilt that I don't need anything else to add to feelings of inadequacy.

Not to mention my life is often topsy turvy and upside down most days, so I do what I can and be the best mom and person that I can be.

So there is my New Year's Resolution. To be the best person, mom, wife and friend that I can. And maybe figure out how to blog better...like my font just got really small and for the life of me, I dont know why.

My blog has about 50 different fonts in 50 different colors, but what's a girl to do. I barely have time to get on here and type. I should be sleeping because I have to work tonight, but there's always time for sleep later.

Last year was a trying year for our family. Health wise, that is. We had some pretty scary moments, but we made it through them. I did accomplish a few things I was proud of and we all made it through one piece.

So I will end this blog post and then do TWO more for today. I want to update Kai and his recovery seeing how his last pictures are pretty gruesome and today is a very special day for our family as well.

I hope everyone had a Merry Christmas and a great New Year. I hope 2013 is a good year for everyone...we did after all beat the end of the world on December 21st...