Anna Marie had a pretty good day yesterday. Her MiMi flew in to be with her so I could go to the hotel and sleep. She had a blast with her and I slept for 12hrs. When I returned this morning she was feelling better and they started her discharge papers. I took Mary Anne back to the airport and when I returned they were ready to take off her bandages and her stitches that were in her stomache. This was a very painful ordeal and it caused Anna to cry for along time. Then to top it all of she went and looked in the mirror and said mommy im ugly now and cried more. Her pain med's had kicked in and started working so we talked her into taking a nap and that worked very well she slept for 2hrs woke up and was feeling much better. We were discharged and came to the hotel and it was time for pain med's again so we took those and watch some tv. Anna fell asleep and sleep for 21/2 hrs and when we woke up I ordered in b/c she didn't want to leave. Anna took pain meds again at 9 she went 6hrs w.o pain meds YEA!!!
We go see Dr Kosnik on tuesday morning and we will then find out if we get to come home.. Thanks again for all the prayers we still need them.. love to all Joy
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.
Sunday, November 15, 2009
Saturday, November 14, 2009
Is so very thankful for Prayer and friends that you can call in the middle of the night to start praying. Anna's heart rate dropped around midnight and at 1:00 I sent a text out to start Praying. We did everything to get it up and we couldn't get it up we walked, talk to her moved her around. Nothing worked so we started listening to casting crowns quoting scripture and had family and friends praying Finally around 3:ish her heart rate went up and hasn't dropped below 70 anymore. We are now going to try to get her to eat and keep it down then we will go from there. Love to All, joy Ps if you don't believe in the Power of Prayer you need a real come to Jesus meeting :)
Friday, November 13, 2009
Update: Sorry it took so long had some problems with the blog letting me log in.. Dr Kosnik came out around 3:15 and said surgery had gone well and they he thought she was going to be okay. She finally came to her room around 4:20 and we have been fighting to get on top of her pain. As of right now nothing is working and she is throwing up in so much pain. We are giving her Zofran and Lortab and so it looks like we are going to have to give her a cocktail of med's to see if that will help @ 1:30am. She is also having a hard time getting her color back and is very swollen all over her body. I will update again tomorrow Love to All, Joy
We came back to Ohio yesterday for a bilateral subtemporal decompression. This is where they go and cut her skull out to make room for the CSF fluid. Please keep still praying that she will keep her strength and God will be glorified thru all this. We arrived at the hospital around 9:15 because of traffic and Anna was very nervous and was hyper up until they took her back then she was very upset. The took her back around 12. so we will update post surgery once we get into ICU and she gets seddled. Thanks for all the Prayers.
Tuesday, November 10, 2009
all your Prayer Warriors: Anna Marie cried on the way home from school today and has expressed that she is very scared b/c of the upcoming surgery. Pray for Peace that passes all understanding, God's love to shine thru her now more than ever. I know that this isn't going to be her last surgery but I do know that God has called us to ask and we shall recieve. Thank you, Joy
Monday, November 2, 2009
Update: We have been home for 11 days and its been pretty rocky. We have been going day by day. Some have been better than others. However Anna got stung on her hand on Thursday and didn't have a reaction Praise the Lord! We go back to Ohio on Nov 12. to have surgery Nov 13. We will be doing a double sub temporal decompression. (yes we are doing it again). Please be in Prayer for Anna has we she is getting over having all these surgery's. And for the finicially aspect as is gets very exspensive going back and forth however we know this is where God wants us to get anna's treatment and has allowed us thus for to be okay. Thank you for your continued support thru all this. We love you all, Mark,Joy, Anna Marie, Alexandria, Austin Mark. :) John 10:10
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