may 23,2009

The Copley Crew 2009

at the library

sunday may 17,29

well we made it through the week. The morning of Hannah's surgery last Monday she weighed 14.2kg. she weighed in at 15.1 this morning. We had to cancel her occupational and physical therapy for a while and limit her activity so she don't burn up any calories. The last few days she has started regaining her energy, so keeping her sedentary is getting harder, but it is good to see her coming back to being herself again. Update more later gotta run for now.

hannah's procedure for 5/11/2009

Hannah is having her transgastric jejunal tube replaced tomorrow at Childrens in Omaha.

found a video on utube http://www.youtube.com/watch?v=AiZDoXRWLe4&feature=related

Primary Immunodeficiency (PI) diseases

Immunoligist Appointment Update:
Hannah's monthly infusions of antibody replacement therapy the past 5 months has raised her IgG2 levels, which means it has been confirmed That Hannah has PI. We are switching to Vivaglobin a new infusion that she will get 1x a week, sub-Q instead of I.V. There will be a Home Infusion service come out and train me how to do this. Our hopes r that if this continues to go well they will let her go back to school next year. Dr referred us to a pediatric rheumatoligist, though I am not quiet sure where that is going.

trying to catch up

Paul Ishii, one of the volunteers who looked at my van.

and Anthony enjoying hanging out with a fireman!

it's has been difficult for me to keep this updated lately. Our family is under some severe stress the last few months. my mom had her surgery and is going back to work Monday. I have had my shoulder surgery and it is coming back slowly. My blood pressure had still been giving me problems, i stopped counting new bruises from passing out. then last Friday I really screwed up my ankle, and now in a brace up to my knee... i think the problem is my body is just not keeping up with the rest of me! lol, My ADHD keeps me going. Ashley has strep throat, now Hannah is real sick, been in ER twice since Thursday night. Dr. called me this am and we went in to lab for more blood work. God she so needs a port!! She has to be in Omaha on Monday, seeing Immunologist, and then scheduled for surgery to have her GJ-button replace. the surgery is not certain now that she is sick, but her button is in bad shape and seriously needs to be changed or she is not getting her nutrition. at all. So when we get to Omaha I am fully expecting to be admitted. How it has worked for the last year in a half, is that Hannah gets to come home because she is "stable" When she gets sick like this, well you get it. So now we go into the mode of our family being tore apart again. I am everybody, mom too, main source of transportation, so when I'm in Omaha, My mom is stranded with my other 3. we do have amazing people who sacrifice and do so much... Steve and Bev Kelsey!! God we love you! who help us overcome, I just carry serious guilt issues not being able to do it all, I have always been stubborn and independent! oh , and then... and your saying can there possibly be anything else!... lmao. Oh hell yes there is always more. Monday my small antifreeze leak became well pretty bad. and yes boys this has been confirmed now by 3 mechanics. all week I was getting about 10 mpg of antifreeze... and you thought gas was expensive! But God always seems to answer our prayers and sent us wonderful angels... in race cares, baby!! :) Holiday Horsepower Drive and fellow members of Dirtdrivers.com posted our situation, and we quickly got a network bigger than Verizon of people offering there help. Opening their hearts to my little family who is no different then any other who are just struggling to survive.and the whole thing reminds me to drop on my knees, slowly it hurts, and praise God for my crazy life because I truly don't know how to live any other way. and wouldn't even want to try.