This is Anna Marie Dingess's blog about her fight with Pseudotumor Cerebri. Pseudotumor is so rare in children that she is the 42nd child in the United States diagnosed with this disease.
Saturday, December 18, 2010
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
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.
Thursday, October 21, 2010
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.
Friday, September 3, 2010
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.
Friday, January 22, 2010
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
Thursday, January 21, 2010
Wednesday, January 20, 2010
Well today we went to see the ENT to see if Anna's headaches were from the mastoiditis she had a few weeks back. Well her mastoids look great and the pain isn't coming from there. So we called Dr Big Guy back and told him our good but crappy news and he said come in first thing to see me. While we were at the ENT I asked him to look in Austin's ear b/c it had been bleeding and we find out he has a ear infection and needs new tubes so I guess when we get home I will be going to take little man to get new tubes. I will post tomorrow and let you know what the Big Guy says. Anna Marie doesn't feel good at all and needs your prayers we have almost ended up in the er twice since being here b/c her pain is out of this world.
Love to all the Dingess Crew
PS THE GREATEST NEWS OF ALL WE FINALY RECIEVED HER NEW BIRTH CERTIFICATE
ANNA MARIE DINGESS :)
Love to all the Dingess Crew
PS THE GREATEST NEWS OF ALL WE FINALY RECIEVED HER NEW BIRTH CERTIFICATE
ANNA MARIE DINGESS :)
Tuesday, January 19, 2010
update
Well we 3 dr appts today and only saw 2. The first one was Dr Hardin (endocrinologist) anna is doing great with her growth. She grew 13 cm over the last year. They are sending her to a rhumatologist (sp) and are going to keep her on the growth hormone and have a check up in 6mths. Now on to Dr Kosnik (neurosurgeon) said that he wants Anna to go see a ENT in the morning and if her headaches are not fronm the mostoiditis then we will go back on thursday morning and repunt. Then we are waiting to see when we will go see the rhumatologist and should find out tomorrow. Please Pray that we other get a paycheck very soon. We have $400. to last us the week and to get us home. God has always provided and thats why we our asking for PRAYERS. Love you all Dingess Crew
Thursday, January 7, 2010
As of today the Jan. 7 Anna is doing better we had a dr's visit on Monday and they want us to go see a ENT so as soon as our insurance gets fixed we will be going to see the ENT. We are going to homeschool Anna for the month of January to see if we can get her immune system better she can go back in Febuary. We go to Ohio on January 18-21st for check ups but so far Anna's shunt is doing great PRAISE THE LORD! in a couple of day's this shunt will be 3mths old Praying it will work for along time..Thanks again for all the Prayers we sure appreciate them and can feel them.
On wednesday the 30th they checked her CBC and it had dropped back down to normal so they released us to come home. This meant for the next 14days Anna couldn't leave the house unless she has to go tthe dr. The med's have made her not feel to great but were home! I was giving her med's every 8hrs which meant I had to get up in the night to give med's check her temp and so on but thats okay b/c she is doing better and were not at the hospital.
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