we are home

we are home we will be followed closely by Anna's neurosurgeon, neuro opth and regular opthamolagist. If she shows any symptoms we will have another surgery and put the shunt back in. We are just giving her body a rest from foreign objects

Update:

Sorry its taking so long. The blog logging me out and I finally was able to get it. In January we had to have Anna Marie's shunt externalized for a 8 days to see if we could get an infection to go away. WE put it back in and came home she was home for several weeks then started back to school on Feb 7th. Then I recieved a phone call on Feb 22nd from the school that Anna's back was leaking fluid. Once we arrived she had gone thru a couple of 4x4's. WE took her straight to the ER and waited for 1:45min then was taking to a room once we were in a room they took her straight to the OR for emergency surgery. The found her elbow connector in her back eroded took it out replaced it fixed a spot on her belly then stapled her back up. Then we had another spot show up on her belly we decided on thursday we would probably have to go back in on Friday. So on friday we decide to take everything out and let her body rest.

Please keep Praying as we are seeking a neurosurgeon. The Dr in Atlanta said he wouldn't take her because Anna Marie was to high risk but did her surgery so we are praying that maybe he would have a change of heart and that Anna and I would be okay with him... Anna isn't really sure about him because he told her she was to high risk and in her world that doesn't give her very much confidence.

THANK YOU

WE HAVE 2 HUGE THANK YOU'S... 1ST ONE IS TO DENVER LEADS GROUP FOR THERE FUNDRAISER AND SUPPORT, YOU HAVE NO IDEA HOW MUCH THAT MEANT TO US. THANKS AGAIN

2ND ONE IS TOO KIDS WISH NETWORK -- ANNA MARIE WAS GRANTED A WISH TO GO TO FLORIDA FOR A 5 DAYS. WE WENT TO SEA WORLD, UNIVERSAL, DISNEY FOR 3 DAYS.. AND THE LAST WAS DADDY CAME HOME FOR IT


THANK YOU ALL EVERYONE FOR YOU CONTINUED SUPPORT FOR ANNA MARIE AND THIS HORRIBLE CHRONIC ILLNESS IH/PTC. WE LOVE YOU ALL THE DINGESS'S

Update!!

Anna Marie's had another surgery Dec 2, because she had fluid coming out of her scar and had made a bubble. So they went in and cut out the pseudo cyst that was in between her H2 valve and the skin. Then they opened her shunt up and let it flow put it back together replaced a connector that had broken cleaned out her belly and back to recovery she went. Anna Marie had a great surprise her grandpe from CO flew in to be with her and stayed at the hospital with her.. So we are on the way to recovery and Praying she can go a little further in between surgery's.

For anyone who is reading Anna Marie's blog for the first time. Psuedo tumor cerebri and Intercrainal Hypertension it the same thing. Just with several different names. Normally in children they call it psuedo tumor and adults intercrainal hyptersion. You can also donate here by clicking on the donate button and following the steps. Also a big huge thank you to Colorado leads group for doing a fundraiser that is going on right now..

Again

Well after surgery in Sept. in my opinion Anna never got back to her full self. About 2ish weeks ago her valve in her stomach popped out. Well we went to her ped's and she didnt really like and we had an appt with the surgeon who did her surgery in september he had no clue. But decided to push on it pretty hard well that was last wednesday. After that day she progressivly got worse by monday her face was swollen and she wasnt able to go to school. Tuesday she went to school for 2hrs and came home b/c she couldn't handle the pain. So off to Ashley's office we went we both agreed it was broken but was trying to avoid the er like the plague but Wednesday we got up and Anna was worse, so off to the er we went. Xrays, ct scan later it was very clear her shunt is broken and the valve is not connected. They admitted Anna into Egleston for surgery today. Please pray specifically for anna she is really not sure about Dr "big guy" Kosnik isn't doing her surgery so she's extremmely scared. Love you all joy

Yuck :(

I just realized in my head I updated the blog but not in reality. So in Septemeber Anna had severe abdominal pain went to the er they sent us home 2 days later we were back ended up in emergency surgery they found psuedo cyst and a fluid pocket and her shunt twisted. Fixed the problem and she was back to Anna almost.

Sorry its taken so long to update they blocked us out of the blog for a while

Good afternoon, I will take you on our journey since January. We went thru the spring with some nasty migranes and mommy was trying to finish the house since daddy was deployed. Anna started having memory loss as the headaches got worse. We went to Ohio in May and had another surgery while they were in her they found a cyst that had 200cc of fluid. We went home with orders we had to come back in 3 wks. So the first of June we headed back up to Ohio. We started seeing dr's early tuesday morning at the time did an xray and found another cyst in her belly. They referred us to a GI dr on wednesday morning and he said she was fine from his point of view to go back to Dr Kosnik on thursday we went back to see the dr to find out he wanted a ct so downstairs we went to get this down 2 hrs later we completed the ct and went back upstairs. Once we arrived back into his office he sent us straight to the General surgeons. We waited for another 2hrs to see this dr as they worked us in and we got to the back and saw Dr Smith Im not sure why your here. I told him it was becuase she had a cyst in her belly he was confused and said I don't see anything go back to Kosnik's office. Well this was after 5pm and he was waiting for us. He said Joy you have to see this so on one screen was the xray with the cyst and the next one the ct without it. Praise Jesus it was gone in 2 days... Well then we came home and had a pretty good summer with just a few headaches. Then on tuesday August 31,10 anna started throwing up with a nasty headache so on wednesday we went to see Dr Ashley (the best ped's dr ever) and she said I know its bad when shes throws up. We called Dr Kosnik and he said if anna woke on thursday with a h/a we would order an LP. Well I woke up and rolled over and felt anna's head and it was hard as a rock so off to the er we went. Today Anna's back's hurts and is lying flat. I will update over the weekend to let you know what going on.. Thanks again for all your prayers and support.

Sorry I didn't do this earlier. Anna's surgery went well, when she came out of surgery her hear rate was being funny and would go down then up then down and up. But she is doing GREAT were up walking around doing makeover on our friend avalon. Bugging the nurses which bye the way she does best! The best news yet we get to come home tomorrow!! YEA PRAISE THE LORD!! I am goping to be wore out next week but that will be okay. Thank you for all the PRayers... Anna said to tell yall to please PRay for her friend Avalon b/c she has to have surgery on monday. Please go and read her story. www.caringbridge.org/visit/avalonhavan Love you all Anna and Joy