Hello everyone!
I am still in my blogging funk and I may never get out :/
We are doing good.
Kenya graduated from Kindergarten and can't wait to start 1st grade! I am hoping to post a much longer blog about this soon because I am so excited for her and because I have a ton of pictures to share.
Kenya LOVES making art and she spends several hours a day coloring and creating art projects. We have a local art studio that she is enrolled in and will be in art classes once a week for the next 11 weeks. She is so excited about it!
Kenya is also finishing up her first semester of ballet. She has done really well and her first recital is this weekend!
After that she will take the summer off to play indoor soccer. Papa T is her coach which makes it even more fun.
Judah is such a fun kid to be around (most of the time, I am telling you, him being 3 is much harder than him being 2). He is a Mama's boy which I LOVE! He will be playing soccer this summer and Papa T is also his coach, we can't wait to see him play.
Anton is getting longer, he is a little over 35 inches and weighs 22 pounds. I can't wait till he is back up to 25 pounds but I know that will just take time and his dietitian is happy with his progress so far. We got his iron checked today and it was 8.5 which is a pretty big drop from February when it was 11.2. If we happen to be at the hospital with an iv his doctor will do a blood transfusion but if not we will just see how it is in a few months, if it drops to 6 we will do a blood transfusion at that time but if not we will just wait. His hematologist isn't too concerned and at this point and I trust his judgement. He is one of my very favorite doctors and really spent a lot of time with us today. I asked him lots of questions and got his opinion on a few things I was concerned with. I am so thankful for our team of doctors!
As Anton gets older dressing changes are getting harder. He HATES his baths and cries at random times through out the day because he doesn't want to do dressing change anymore. It is so hard for me to listen to him scream during his baths and it has brought me to tears more than once lately. He is on Morphine and Ativan for dressing change now and it isn't really helping. We have a meeting with pain management soon so hopefully they can figure out something that will help make it easier.
Jason and a few of our friends started a blog and podcast for Reformed Baptists and we are really excited about it. They post news, headlines & podcast from Reformed Baptists, exciting stuff if you ask me. This week my husband interviewed the author of the book 66 Books One Story. It is a great book showing kids the salvation thread throughout the Bible and tying all 66 books of the Bible together! We are using it for Kenya's Bible curriculum this year but it would be great to use in family devotions as well. They are giving away 2 of these books so check it out by clicking HERE.
I am still in my blogging funk and I may never get out :/
We are doing good.
Kenya graduated from Kindergarten and can't wait to start 1st grade! I am hoping to post a much longer blog about this soon because I am so excited for her and because I have a ton of pictures to share.
Kenya LOVES making art and she spends several hours a day coloring and creating art projects. We have a local art studio that she is enrolled in and will be in art classes once a week for the next 11 weeks. She is so excited about it!
Kenya is also finishing up her first semester of ballet. She has done really well and her first recital is this weekend!
After that she will take the summer off to play indoor soccer. Papa T is her coach which makes it even more fun.
Judah is such a fun kid to be around (most of the time, I am telling you, him being 3 is much harder than him being 2). He is a Mama's boy which I LOVE! He will be playing soccer this summer and Papa T is also his coach, we can't wait to see him play.
Here is Judah, messing with his sister.
Anton is getting longer, he is a little over 35 inches and weighs 22 pounds. I can't wait till he is back up to 25 pounds but I know that will just take time and his dietitian is happy with his progress so far. We got his iron checked today and it was 8.5 which is a pretty big drop from February when it was 11.2. If we happen to be at the hospital with an iv his doctor will do a blood transfusion but if not we will just see how it is in a few months, if it drops to 6 we will do a blood transfusion at that time but if not we will just wait. His hematologist isn't too concerned and at this point and I trust his judgement. He is one of my very favorite doctors and really spent a lot of time with us today. I asked him lots of questions and got his opinion on a few things I was concerned with. I am so thankful for our team of doctors!
As Anton gets older dressing changes are getting harder. He HATES his baths and cries at random times through out the day because he doesn't want to do dressing change anymore. It is so hard for me to listen to him scream during his baths and it has brought me to tears more than once lately. He is on Morphine and Ativan for dressing change now and it isn't really helping. We have a meeting with pain management soon so hopefully they can figure out something that will help make it easier.
Just for fun here is Jason and Anton doing their guitar faces :)
I am doing good as well. I am about to turn 29 and I have been telling random people lately that I am almost 30. I enjoy this because I still look 16 so their reaction when I tell them is always fun.
Here I am looking 16 at almost 30.. cause you know almost being 29 makes you almost 30 :)
I am looking forward to starting Kenya's 1st grade year soon and I am going to be teaching Judah and Anton preschool as well. I have some really fun things planned with lots of crafts and science experiments so it should be lots of fun.
It is easy to paint this beautiful picture on a blog of how you want people to think you are but lets be real for a minute. I tend to be a pretty grumpy person and don't always say the nicest things so my goal for tomorrow is to be nice all day and to try to complain WAY less. We shall see how it goes...
And there is a quick update for you all!
3 comments:
You are my hero Nessa. I love you and miss you and still think of you often. I'm always so excited when you put out a new update on your blog! The kids are just darling and yes, you still look 16!! You lucky duck! Hello to Jason, hugs and kisses. Aunt J.
Love your blog posts. Even if they are sporadic (mine are too on my blog!), I love hearing how your sweet family is doing!
Vanessa,
I read about Anton first at Anya's blog (Knit to adopt), and recently- in the russian paper, I googled the disease Anton has in Russian- and cam across one page : a woman who managed to treat her son sucessfully- sounds simple- and who knows- simple things sometimes work better thatn complex, here is the site http://www.trawka.ru/voprosy_otvety/kak_vilechit_bullezniy_epidermoliz.htm,
and below is her advice: 3 times daily vibirnum berries (kalina) with sugar, Bidens tripartita (bur-marigold) baths and she is sayong that the most effective were potato peels: for 2 pounds of peels 1 gallon and 1 quart of water, cook it until it becomes VERY soft, string it, soak a sheet, don't squese it and rap around the body, wrap plastic, cover with blanket, let the sheet dry (boy, it will take long time!) , after taking sheet out, don't rinse, but apply corm oil - this is what is on the web. And I would suggest you to read about colloidal silver - it helped my husband with treating cancerous skin issues- http://www.naturalnews.com/038579_colloidal_silver_healing_water.html (and you can find info on the net) .
I hope something helps. I wish I can help you to find a way to treat your baby
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