Bubble Boys

To my friends who keep emailing me the wonderful news about the gene therapy for child with this disease.
My boys do have Bubble boy disease but there are 2 different forms of it.
Sever Combined Immune Defficincy (sp?)- This is the one that the "gene therapy" will work for, These kids are missing all of their immune systems and it typically does not very in which parts are missing. It is genetic which means both parents have to have the recesive gene.These are also the kids that will not leave the hospital until they have recieved a bone marrow transplant. The State of Wisconson is the first state that will start testing all newborns at birth for this disease! Which is a huge deal. It means that these kids will get the treatment that they need right away!
Common Variable Immune Defficincy- This is what my boys have. Also known as primary immune defficiency. They are still trying to identify all the genes that cause this disease. 90% of the time it is genetic, like in my boys case, It is passed from Mother to son. Very rarely is it passed to a girl. Amelia more than likely is a carrier like me. No one child with CVID is missing the same parts of their immune system. We as parents do live with the fear of them getting that one infection that will kill them. We do what we can with IVIG infusion and preventative antibiotics, Theses kids still get very sick even with all that.
I am a big believer in giving blood it helps to save these childrens lives. It takes roughly 50,000 (not a typo) To get 5 grams of IVIG for each of my boys.
Noah was 2 when we found out. He started on treatment right away. Wyatt started getting tested right after that. His immune system was low and we treated it with preventative antibiotics and it seemed to keep him healthy for the most part, Then When he was 1 he got strep and it wiped out what good immune system he had left.
Noah has been doing IVIG for almost 3 years now.
Wyatt for a little over a year. I will try to get some pictures to put up of them in the infusion office they look very cute with their blankies and animals watching movies!

Noahs School play!

Noah had his first school play on January 15Th. His school play used all grades from PreK thru 5Th grade. They were telling the history of the USA. Noah's class sung about Yankee Doodle! It was so cute. I couldn't help but get teary eyed while he was up with his class singing. He has come through so much in his short life. When he was born we did not expect him to make it. Then again when he was almost 2 and was diagnosed with common variable immune deficiency and at that point thought his best option was a bone marrow transplant. He was not responding to the normal treatment for CVID but within a matter of weeks his body started accepting the infusions! But i am off the subject now. He was so proud everyday when he would come home from school with his "homework". Which was to practice his Yankee doodle song. Up on stage he was easy to pick out! He was the whitest kid up there! He is on the left first row 2nd in. I am so proud of him. He knew all the words and actually sang!

BABY #4

I had my OB appt. this week and we did a sono to see how things are going. I am due July 5th but more likely the week of June 22nd. I never make it much past 37 weeks. Baby looks great. He/she was about 5 oz, and right on schedual for how far along i am. I do have sono pics and will post them soon! I have a great picture of he/she's foot. I have decided with this one i am not going to find out. I already have 2 boys and a girl and still have everyones baby clothes.

Amelia turns 1!

I cannot believe it has been a year since my baby girl was born! She is still so very little. Which is fine with me! She was born on January 11Th 2008 at 1:46 pm. She has changed so much in a year. Her personality has blossomed too. She is sweet and loves her brothers they can get her laughing and it is so cute. She is also my loudest i think. I guess with 2 big brothers you would have to be! She loved her birthday dinner of pancakes (which are her favorite) and strawberries and then for desert was a yummy chocolate cake! She got from her Nana her first American girl doll. It was the 2008 doll of the year who's name just happens to be Mia, which is what we call Amelia!

Christmas

Christmas morning was wonderful! The boys came in around 7 to wake up miss Amelia and me. Then we went to wake up Nana. My mom and i stayed up quite late the night before to help Santa put together Noah's wonderful dinoroar as he calls it. Noah got spike the dinosaur. He is 2 1/2 feet tall and is remote control. Wyatt got a geotrax train set, which we had to put together when he saw! then Amelia got a cruise and crawl jungle set! which some how the boys play with more than she does! It was a great day. We went later that day to my aunt and uncles where the boys got to play with their cousins Brandon and Nathan who are the same age! Noah and Brandon played guitar hero which was priceless to watch. Wyatt and Nathan wore each other out playing foot ball outside.