March 9th 2010

Ok so I have been holding off for a few days just been so busy. Met with the genetesist yesterday. Bad news is we never found out why audrianna has cerebral palsy usually a child has a loss of oxygen, stroke, brain hemmorage ect. That can cause Cerebral palsy but all audriannas tests came back normal. So we have a 4 yr old with cerebral palsy and no known reason unfortunatly cerebral palsy in itself is not enough to get the help that we need like speech therapy, a communication device ect. So the genetesist said she might have to figure something out to help. The other bad side to this is it leaves them to not know what exactly I should be tested for during this pregnancy. I am willing to get prenatal testing and screening done as long as theres no risks to the baby. So to start I am scheduled for my first trimester screening heres some information about the test.
http://www.americanpregnancy.org/prenataltesting/firstscreen.html The bad thing is the ob never really discussed the tests so when My genetesist found out how far along I am she was like you need to call and have this scheduled asap cause it has to be done between 11 and 13 weeks I will be 12 weeks this saturday. So I scheduled the test it will be done on february 2nd. Then I need to look into seeing if my health insurance will cover carrier testing for common genetic diseases that test looks for cystic fibrosis, spinal muscular atrophy and fragile x syndrome. If my insurance covers it I will schedule to get that testing done with my genetesist its to check and see if I am a carrier for any of those genetic disorders. if they come back negative no further testing is needed if any of them come back positive then stephen will need to have blood work done and I will need an amniocentesis. Its all very worrisome i guess u can say. The genetesists thinks the baby will be fine, she thought so in the past which is why we were giving the ok last year to have more kids. But because I have anxiety and panick attacks they want to help ease my mind. Plus it would be helpful to know in advance if we will be having another special and needy child.

We also have The date for Audriannas surgery they weren't kidding about scheduling it as soon as they could. So audrianna will be having surgery on March 9th. we do not know a time yet or how lengthy the hospital stay will be we should know on march 1st when we spend the whole day in boston for her preop appointment. so now its time to plan financially for the hospital thankfully we have insurance. But we need to factor in food for stephen and myself if two parents cant stay overnight then a hotel room for stephen because Audrianna is a big mommys girl and I can't not be with her after surgery. Then we need to figure out cost for parking yeah the hospital we will be at actually charges to use the parking garage for a few hrs last time it cost us 20.00 they do waive the fee a bit So i am hoping thats the case if u have to for a night or a few days. We are hoping for great progress after this surgery. She will be in casts for 6 weeks full leg casts from toe to hip not sure if it will be a spica cast or not. And she has to remain off her feet so shes gonna be confined to her bed or the couch for atleast the first 3 weeks. So i am hopin to get myself to the dollar store when we have some extra cash and grab up coloring books and crayons and some books ect anything that she can do while shes on the couch, maybe get her a few movies. I am praying for a speedy minimal pain recovery since the procedure is painful and audrianna is allergic to both codiene and morphine so she can't have either of those and tylenol alone isnt gonna help and we have to becareful with motrin cause of her past platlette issues. We are also praying for a flaw free surgery since audrianna is very well known for not doing to well during surgeries.

Her genetesist is positive audrianna doesnt have mitochondrial disorder but would shoot an e-mail to the genetesist at tufts to see if she feels audrianna should still be tested for it or not. Because she herself feels that a muscle biopsy would be a bit much for audrianna. If neither genetesist feels she has it or should be tested. Then they will contact the dr in bsoton who keeps wanting her tested and let him know cause she can't get sdr surgery unless he knows if she has mitochondrial disorder or not.