Graysons One!!!!

First off I want to thank everyone who made  it to Graysons first birthday! It means the world to us to be able to spend it with you!

In the scid world 1st birthdays are a huge deal ( well every bday) mostly with this diagnosis if it is not caught early and treated with a successful bone marrow transplant. Children with scid do not live to see there 1st or 2 nd bday. Due to an illness or starvation.  We have had some scary moments in those regards and u have all been with us through it  all and we thank you.  so ..  needless to say this was very special to us!

Unfortunately with Grayson s condition he was not able to have a huge party which we like to do, but it turned out perfect!

I can't believe baby is one!! Can't wait to celebrate the next little man! He is truly our super Manny!!

First hike of the year!

June 2nd 2013
We decided to take a like trip to hike and have a picnic!  We decided on cascade springs! The docs have said the best place to be with Grayson is out side because the germs are not enclosed in so we plan on taking full advantage of that this summer since we love outside! This girls and grayson had so much fun they didn't want to leave!

Graysons birthday eve!

Every year with our kids since ellie was one we tie ballons around there bed and so they wake up to a celebration first thing! They love it and they look forward to it every year! Since the girls are a little older the (birthday fairy) does a balloon for every year they are with a dollar inside!

Pics from last hospital stay

He also had to get poked for blood draws twice :( because his line was being a turd :(

Mannys last couple hospital stays blahhh

Well Sorry this has taken forever and a day to get done, I know many have been waiting to know whats going on with our little nugget. LOL

Well a few weeks ago after we found out Grayson had Norovirus they let us out of the hospital pretty quick after finding out. We tried advancing his feeds pretty fast to get him to full feeds, but his tummy didn't like that :( so we were released on May 27th but he started pooping like crazy again and Wednesday at Clinic they decided he needed to be started on TPN again so he is getting nutrition and his tummy can rest some more. His white count was still pretty high also 25000. Yea not good :( and his Co2 ( it is a chemistry in your blood)  Normal level is 20-24 and Graysons was 11. So they decided to admit him :( to get things straightened out. He did not like not eating again but it sure did make his belly happier, after just a day we were able to up his pedia and he was able to go home Friday the day before his birthday!!!! yea... he handled everything really well over the week end and on Tuesday at clinic they were happy to see his white count was a nice 10000 and co2 was 24!! So we decided to try half strength formula and pedia and his tummy is doing ok so far. Poop has picked up some but not terrible! We are also starting his steroid tapper again. If everything goes good he can be off in 2 weeks and have a rest week or two and start tapering the cycolsporine. YEAAAA! Cross your fingers for us!!!!