Monday, April 30, 2012

Movie Monday

On our second trip to Russia, Anton had a book that played a song with his name in Russian. We thought it was so cute but we didn't realize it is a famous Russian nursery rhyme. Once we got home with Anton several people sent us the link to "Anton's" song on Youtube and we normally listen to it at least once a day. Kenya, Judah, and Anton all love this song!

Here is Anton dancing to and singing his song.

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Here is a video of Kenya singing Anton's song to him during dressing change.

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Here is his song if you want to hear the whole thing and see the cute little story.

Friday, April 27, 2012

UPDATE: Kenya, Judah, & Anton want this book... can you help?

UPDATE:
I AM SO EXCITED TO TELL Y'ALL THE BOOK WAS FULLY FUNDED!!!! THANK YOU SO MUCH TO EVERYONE WHO HELPED!!! I WILL LET YOU ALL KNOW ONCE YOU CAN ORDER YOUR OWN COPY!!!
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Our kiddo's love to read books, we have tons of them and they love getting new ones. But, there is one book coming out, well, hopefully, that they would love. It is a book about a little cupcake, named Preston, that is adopted... (I won't give away any more of this great, kids friendly story) and one of the authors of this book is their uncle, their very own Uncle Toe Toe! He even wrote original music to go along with the book.

They launched a Kickstarter campaign to make this book and music a reality, and there is only 48 hours left, and as of writing this, it is 93% funded. Thought some of y'all may be interested given your interest in children and adoption.

To learn more and join in and help, check out their Kickstarter page:

Here is a picture of Kenya and Judah with their Uncle Toe Toe and his girlfriend Tiff Tiff (who is also apart of the book/musical):



Wednesday, April 25, 2012

FAQ

Hey y'all, sorry I haven't gotten to write the Frequently Asked Questions post until now. I am going to answer a few questions a week until I am all caught up. If you have more questions feel free to post them and hopefully I will be able to answer them soon.

What is Epidermolysis Bullosa (EB) and will Anton get better now that he is in America? 

EB is a very rare genetic skin disorder where basically the first layer of Anton's skin is not attached AT ALL to the second layer. Friction can cause blisters and a lot of friction can cause his skin to literally come off. We can kiss and hug him (apply pressure) but we can't rub his skin back and forth (friction). We have to be careful when we pick him up so we don't move his skin or it will come off. For a more detailed explanation of EB go HERE!

There is currently no cure for EB so as of right now Anton will not get better unless God heals him. In the month he has been home we have already seen his skin go from being really bad and full of HUGE wounds to almost clear to pretty bad again. The hospital that Anton was at for the last 16 months of his life took amazing care of him with the resources they had but we just have more research in America and better medical supplies to help heal his wounds. So yes he will most likely do better in America but at the same time he will always have EB so he will always get wounds.



Megan wanted to know about the day to day care of Anton's skin.
Once Anton wakes up in the morning the first thing I do is change his diaper. I look for new blisters around his diaper area and if he doesn't have any then I use some cream that is safe for cloth diapers and rub it all over the skin that his diaper will touch. The reason I do this is to keep the diaper from rubbing on his dry skin which would cause blisters. If he has a blister then I have to pop it and drain all the liquid out of it otherwise it would just keep growing since his skin is not anchored down. After I pop and drain it I put Polysporin over his wound to help prevent infection and I put a patch of transfer over the wound. If I think his skin is going to tear I put the Polysporin on the transfer patch so I'm not rubbing his skin. I also check for blisters around his arm pits and his neck. After that we snuggle then he is happy to sit on the floor and play with Kenya and Judah. I try to keep Aquaphor on his hands which helps him not get as many blisters. We are also putting cream on his cheeks to try to clear up the red circles he has on them. His dermatologist thinks that is Eczema and not EB related, so we shall see. That's pretty much all I do for his skin during the day. We do his dressing changes on Monday, Wednesday, Friday and Saturdays (he used to just get two a week.) I will post a blog about dressing change at some point but not today :)


Kim wanted to know how we bathe him without hurting his skin?
If we give him a bath in the tub we leave his transfer on while I am carrying him to the tub. Transfer is the bandage that his whole body is covered in. Then once I get him in the tub we take off the transfer from one limb at a time. I can rub his skin as long as my hands are lubricated. So I put tons of liquid soap on my hands and rub his skin (which is lubricated from the bath water). If he has an open wound I just pat that area. Then rinse off the soap with water. I was lifting him out of the water without anything on his skin but I barely moved my fingers across his legs and rubbed some of his skin off so I don't do that anymore. To get him out of the tub I get a piece of clean transfer, get it wet, then put it on his back and put another on one of his leg so I have something to hold onto when I get him out of the tub. I put my arm behind his back and tell him to lean back, which he does, then I put my arm under his legs and hold onto the transfer that is on his leg. I slowly lift him out of the tub and hand him to the person who is helping me. They hold open a soft blanket and that's what I put him on then I take him from that person and put him on his changing table.

Matt Williams wanted to know if I filled out a March Madness Bracket yet?
Matt I am sorry to say I never did fill out my bracket, in fact the only time I have ever filled one out is when I stayed with you and Patrice... I know, I am a bad person... :D

I will try to do a FAQ post again next Wednesday and maybe every Wednesday until I have answered all of your questions.

And here is a picture of Anton cause I know that's what you really wanted to see :)



On a totally random side note will you please be praying for my cousin Josh. He was in a really bad car accident and he is not doing well at all. He broke most of the bones in his face and lost one of his eyes. He is in the ICU and they are just waiting for him to get a little stronger before they try and do any surgery's. He is only a few years younger than me and I am very worried about him.

Okay that is all. I hope y'all have a great week!

Monday, April 23, 2012

Movie Monday

Here is a video of Anton pulling up to a standing position in his bed. This was from our second trip to Russia and we were so excited to see him do it!

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Sunday, April 15, 2012

Movie Monday

So I thought it would be fun to post little videos of the kids on Mondays. If someone out there in the blogging world already came up with this idea and wants credit for it just let me know.

Our first video just might be my favorite one I will ever post. Anton LOVES blowing kisses and yesterday he started saying something after he blew the kiss so I started listening to what he was saying and I was blown away he was saying LOVE YOU!!! I couldn't believe it. We tell him we love him all the time but I couldn't believe he figured out blowing kisses and saying love you go together. It is the cutest thing EVER.

Anton would like you all to know he loves you!!!

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I had this set to post tomorrow but for some reason it posted today??? Enjoy Movie Monday a day early :) 

Monday, April 9, 2012

Brothers

Anton and Judah already have an amazing bond and it fills my heart with so much JOY watching them interact with each other.

Enjoy the cuteness!








Wednesday, April 4, 2012

Life is good

So I wanted to write this super long post with every single detail of our lives but I just don't have time so instead I will give you all a quick update with lots of pictures. 

Anton is doing amazingly well! He is handling his feeds through the g-tube great and is the easiest kid ever. He has slept through the night since day one and he hardly ever cries. He is only on pain medicine for dressing change but other than that he hasn't needed any. 

Kenya and Judah LOVE him and they have done so good being gentle with him. They are having a hard time adjusting though. I know they are confused because I was here then gone then here then gone again and now their brother is here so it's understandable, but I am so ready for them to not test us on EVERYTHING. It will take time, I know, but I just wanted to be real with y'all sometime it is hard not because Anton is hard but because Judah and Kenya are giving us such a hard time. We will find a new groove and I can't wait for that to happen. 

We enrolled Kenya and Judah in a Mothers Day Out program two days a week so when Anton is doing Speech, Occupational and Physical Therapy they can be at "school" having fun. We are also having a nurse come out three times a week to help with dressing changes. Today was their first time to come and it went pretty good. Jason and I have gotten into a great routine and we work really well together during dressing change so it was strange to have to tell the nurse what to do when I am use to Jason being there and knowing what to do. I'm sure after some time the nurse will also know what to do, and she was helpful... it was just a little strange for me. I know after some time I will love having a nurse here to help.

Okay I think you are kinda caught up... And now for the pictures.

Here is Anton right before we left the hospital beside all of the stuff we had at the hospital. We pretty much moved in then Patrice, Courtney and Anita brought us a ton of stuff so we had quite the load to take home. All of it was much needed and we were thankful to have it.

Here I am right before we left, I couldn't wait to get out of there. 


Kenya was so happy I was FINALLY home!

Anton LOVES playing in his highchair.

Watching Anton and Judah play and interact with each other makes me so happy. They are so cute together and they LOVE being together.

Rocking the grouchy face.

We have been bandaging Anton's hand less and less in hopes that we would be able to leave his fingers out without him hurting them too much, and we were able to do it yesterday! He has gotten a few small blisters on his fingers but has done great with having them out. We put soft gloves on his hands at night because we don't want him rubbing his face with the gauze that is on his hands and that has also worked really well.

This is his favorite toy from Courtney and Anita. 








We had tornado warnings yesterday so we put the kids in the tub to wait it out and they all did great.

Kenya and her cousins finding bugs in the backyard.

These boys are just too cute!

That's all for now.