The Dingess Family would like to wish everyone a Merry Christmas. Thank you for your support and Prayers over the last few months and for the years to come. Anna Marie hasn't had a HEADACHE for 16days to GOD be the Glory great things he has done..
Merry Christmas again and we will update soon..

Don't forget to go to https://www.teamannamarie.org Our new website for Team Anna Marie

Just wanted everyone to know that Anna Marie has been Headache free for 9days:) Praise The Lord :)

Hello all,

Just wanted to let you know that we have a new site for the athletic team (aka Team Anna Marie). Please visit our new site at teamannamarie.org. You can register and use our Forums

Sorry, It has been a couple of days. Anna was released from the hospital Wednesday to the hotel. On Thursday we went to see Dr Kosnik and was told that we could go home!! So we went over to Dr Katz office and said good bye and headed home. We stopped over in Knoxville at the Page's house, and drove the rest of the way home Friday. We are so blessed to be home. Anna is doing great we are 6days without a headache..Praise the Lord :) God is so good! We find out this week if we can start Anna on growth hormone's!! I will update soon love to all..PS I will get Mark to put up some new pic's of Anna Marie :)

Anna Marie just came out of surgery. Her valve in her stomach was broke, so they replaced it and put her cathiter back inside her and flowed very well. If all goes well they will disscarge Anna on wednesday to the hotel then we will go see Dr Kosnik on Thursday then come home!!!!!!!!!!!!! Thank you for your Prayers and Support

Sorry, I haven't updated. Well Friday was a bad day, from 11 -12 Anna drained 51cc of fluid which is way to much and had the opposite problem and she had a low pressure headache. Anna had a really bad afternoon and got sick b/c her pain was so bad. On Saturday Maryanne flew in and surprised Anna. That was awesome so I went to a hotel and sleep for 13hrs. It was the best sleep ever!!! Sunday was okay day on saturday anna's shunt started leaking from the incension site so we have been watching it carefully. Prayerfully they will move the surgery to Monday b.c of the leak. I will update tomorrow, thank you again for all your Prayers and Support :)

Good Evening, Dr Kosnik wants to make sure that all of her infection is cleared up. So it looks like surgery next Wednesday. Then we will have to be in the hospital for 2 days then we will see about heading home. Pls continue to Pray for Anna Marie and healing for her infections and that she will start eating b/c Anna has lost 5lbs.

Anna had a pretty good weekend. We are still waiting on results but everything right now looks good. Thank you for your continued Prayers and as soon as I get more info from the dr's i will post them. We love you all

The Infectious Disease Dr's came in and said that Anna's white blood cell count had dropped in her CSF. Which is a good thing and the cultures haven't grown anything yet. Praise the Lord. They are going to continue to let the cultures grow b/c it takes 5days to get a clear answer on what it is or isn't. So we are going to wait patiently until Monday to get all the answer however we are already claiming that God is clearing up this infection so we can put the shunt back in and come home! Thank you for your continued Prayers and support... I may not update the blog this weekend due to Anna's daddy,brother and sister will be here. We love you all..

Anna surgery was faster than expected. She has a infection in her stomach and in her CSF fluid. They externalized her shunt, to the outside of her stomach until we can get this infection all cleared up. Dr Kosnik asked Infectious Disease to get involved to find out what kind of infection this is. As it stands they are saying she has a form of meningitis's, we will know more on Friday what kind and what we have to do about them. They started her on 2 different antibiotics to start clearing up the meds. Once we have this infection cleared up we will then go back in and put her shunt back inside of her. Prayer concerns: Anna to stay strong & Care of Alexandria & Austin while Mark is working. And that the Dr's can figure out everything that's going on inside of Anna Marie. We love you all and are blessed for all of your Friendships. Have a Happy Thanksgiving :)

Anna is now in surgery for another new LP shunt and for them to explore and watch the new shunt work. She will be in for a while. Pls keep praying

Anna Marie is having another surgery tomorrow. We don't know what time yet and probably won't know till tomorrow. They are going to take everything out and replace it with new. Prayerfully this will work so we can come home next week.

Well, its with sad news to tell you that we are back in the hospital. Anna Marie left the hospital yesterday morning to get to the hotel and eat and her head started hurting really bad we gave her a dose a lortab she then went to sleep slept all afternoon woke up and took another dose of med's. We went to get some dinner and she slept thru it we went back to the hotel and she took another dose of meds went back to sleep. Anna woke up around 10 and laid in the bed with my mom and talked for a little while then cuddled up to her and went back to sleep. Then Monday we woke up and I had to completely dress her to go to Dr Katz office Anna was very lethargic and just wanted me to hold her. Then she started throwing up and became very week we called Dr Kosnik and they told us to come in thru the ER. So we left Dr Katz office and came straight to the ER at that time Anna passed out and didn't respond to anything finally they awoke her we sent down for an CT and xray to find a kink in her shunt which means its not working we are giving her around of meds to see if we can get the kink out. If the round of med's don't work then we are going to do surgery again and replace the shunt. That's all for now I will write more as soon as I know the next plan

Well, they have no idea why Anna Marie's stomach swelled. They are going to discharge us to a hotel for us to continue to watch her and see how she does. However we can't go far in case she worsens, so we are going to be at the hotel till Dec 4. We will continue to update as soon as we know anything. Thank you for your continued prayers and support.

Please start praying as Anna's stomach is swelling. The surgeons just came in and have ordered a ultrasound of her belly. If there is a opening we are going back into surgery, so now we are just waiting to get the ultrasound to now what the next step is.

Well, the long awaited news.. Anna Marie went into surgery at 8:05pm and was in till 10. The surgery went well and Anna did very well. They took out the old tubing and replaced it with new they also worked on her shunt, then they installed a valve that releases her pressure when she is laying down therefore it should help her headaches. Anna is up and has been walking. She is doing well and is gratefully not to have a headache. We will update later. Thank you the Dingess Clan

Just wanted to let all of you know that Anna did not go back for surgery until 8:05pm. So I will update in the morning how the surgery went and how she is doing.

Well the news everyone has been waiting for. First of its been a really long day we started seeing Dr's at 9am and finished at 7pm. Anna is having surgery tomorrow however instead of the VP shunt in her brain they are going to put a new one in her back because her ventricles aren't opened enough in her brain to put in the VP shunt. And if we did do the VP shunt there are several risks because of the ventricles not being opened. Her surgery is at 2pm. We don't know how long we will be in the hospital it will all depend on how she takes to this new shunt. Nor do we know when we will be coming home due to follow up visits with all the Dr's post op. Thank you for all your continued Prayers and support as we take this journey with Anna Marie. We will update post surgery tomorrow.

Well we go see all the dr's tomorrow

Well we are leaving for Ohio tomorrow. We are driving straight through so we should arrive around 9pm. We have doctors appt. on Tuesday. Anna has had a really tough week and has had some pretty bad behavior because of it. As of right now they are doing surgery on wed. med's aren't helping so we are going to put a shunt in her head. Thanks for all your prayers and I will update Tuesday night.

Well, we are preparing to go back to Ohio on Sunday. We spoke with Dr Kosnik assistant this evening and they are going to put Anna Marie on the schedule for a VP shunt surgery on Wed. the 19th. We follow up with all the dr's on tuesday the 18th. We were suppose to start Anna on growth hormones this last week but due to her shunt not working the encrinologist has decided to hold off until Anna recieves the new shunt. Please continue to Pray for Anna Marie as I think the pain has started to wear on her more and more. I will update more later. Joy

Good Evening, I just want to update everyone. It was Anna Marie's 7th birthday today..And Praise God we went all day headache free (as far we know she didn't tell us she did if she had one). So we are Praising God for that. As for the other days it hasn't been so good on Monday, Anna said it was a 30 it hurt so bad. We have a number system 0 no pain 10 worst pain. And she said no mom you don't understand its a 30. Tuesday she made it till 12 at school then we had to go get her b/c of her HA. Wednesday she hung in there till we went to Church and Mark had to come and get her. We are going back to Ohio on November 17th, to follow up with all of Anna's specialist and hoping for a VP shunt to be put in.

Good Evening Everyone, We came home today, Yesterday after we were released from the hospital we went over to OSU and meet with Dr. Katz our quarterback as you will. The plan of action is for him to talk to Dr.Kosnik on Monday and find out what his reasoning was for not doing surgery this week. We are right now going back on the 17th and meeting will all of Anna's doctors. And more than likely doing surgery then so we will probably miss Thanksgiving here in GA. Thank you for your continued prayers for Anna Marie. 2 major prayer request, that Anna eats and her headaches are bearable until we return to Ohio.

So, here is the new's we are going home tomorrow on alot of Topomax and we will return Nov 17. To see what the next step will be. Please continue to keep Praying for Anna Marie as her pain is still high. We will see you soon.
Dingess Crew

They moved us rooms to 3013. We are waiting for Dr Kosnik to do rounds to know what the next step will be.

Update: We took her of the steriods last night to see how well it worked. They have kept her on zantac because she is nasua pretty bad. We will see the doctor tonight and go from there to see if we have to due surgery.

Good Morning, I just wanted to ask you all to Pray really hard for Anna Marie. This morning she woke up and said " Mommy I want to die and go to heaven because this pain is so bad and I won't have pain in heaven". Thank you for your continued prayers.

So last week was a hard week on Anna Marie. Then on friday they tried her on Lasik (waterpill) and she had a allergic reaction to that. On Monday we went to the ped. and she felt her decompression sites and talked with Dr. Kosnik who then intern said we needed to be up there on tuesday to see him. We arrived at 2:15pm on tuesday and saw him at 4:00 when he saw Anna he sent us straight to the hospital to be admitted. At around 8 the started her on some really strong steriods, zantac and back on topomax. We are seeing if that will let Anna get some relief, and then we will do surgery on friday. He moved surgery from today to friday so we will see how Anna is progressing. Thank you for your continued prayers if I don't answer right away I didn't bring the laptop with me so I have to go downstairs and get on the computer.
Anna's room # 3019 and my cell 404-569-4742

Thanks again
Joy and Dingess crew

Good Morning, I wanted to give everyone an update so you can Pray. Since Friday Anna has been having some really bad migraine's. To the point where yesterday she wanted to put her head thru a wall. Lisa is now on the way to school to get her now b/c she is hurting so bad. Also Please Pray for me as its getting harder to watch her be in pain and not being able to take it from her. Thank you for continued Prayers and friendship.

Update

Anna's prognosis is great. There seems to be more good days than bad. She is still suffering from migraine headaches though. She has completely come off of Topomax. A little history behing the Topomax, she has been on it for about 2 years. So we are excited about that being done. It will be another month or two before we know if her surgery worked, but, we are going on on Nov 17th to see the doctors at Ohio State Medical Center in Columbus, OH. They will make the determination on whether another brain surgery is needed or not. Please be in prayer for us as we make that trip.

A big THANK YOU!!

Anna's Car Show was a smashing success. There were a few minor glitches here and there. Primarily with us getting the judges all there to start the judging, but I take responsibility for that. I apologize to the car show participants. I was getting pulled 30 different directions all day. I didn't even eat until about 9 that night. A big thank you to everyone that came out and helped to support Anna Marie. A big thank you to Vendetta Pizza Cafe for hosting the show. A big thank you to all the volunteers, from parking, manning the booths, musicians, judges and anyone else who was involved THANK YOU, we couldn't have done it without you. William and Mae (Spelling?) Thank you so much. JT, Thank you so much. All the sponsors, Thank you so much. All the people that showed up, Thank you so much and finally to Anna Marie, you are the greatest daughter in the world and I am so proud of you.

The Car Show is upon us

Remember, Anna Marie's Car Show is today at Vendetta Pizza Cafe at 1170 HWY 155 South McDonough. Directions are real simple, It is on the Griffin side of the interstate, past the Krystal and Bellamy Strickland Collission Center on the right. Please come out and show your support for Anna Marie. Even if you can't attend the car show, please consider eating there because we get a portion of the proceeds.

It will be a lot of fun with inflatable jumpers, silents auctions, raffles, food, live entertainment, cars (one is worth $750,000) and of course fun. You can pick up a shirt, while your there for only $15. We hope to see you there

Here is a picture of one of the shirts

Here is one of the shirts that we have for sale. These are the same design as our athletic shirts that will be on our athletes competing in various marathons and triathalons. You can buy one of these shurts for just $15 and become part of the team. All the proceeds will be used for Anna Marie. Just email me at markdingess@gmail.com or call me 404-348-7681 to become a team member today.

Team Shirts are in!!

Team Anna Marie shirts are done. They are looking really good and I will post pictures on the site later for you to see. If you want to wear the same design shirt that the team itself will be wearing for sporting events, then contact me today. They are available for $15 a shirt and all proceeds go to helping find Anna Marie a cure!! You can contact me at markdingess@gmail.com or call 404-348-7681.

Anna Marie's Car Show needs Volunteers this Sunday!!

This Sunday, at Vendetta's Pizza 1170 Hwy 155 South McDonough, GA 30253, is Vendetta's Fundraising Car Show for Anna Marie!! They have been planning it for a long time and we hope it will be a success. We aplogize it is on a Sunday, as many of you know, if the church doors are open then we are there, but this is the only day they could use the entire parking lot. The other stores in the strip mall are open Monday through Saturday and so the only day they can do it is Sunday. We need a minimum staff of about 24 volunteers. We need 4 for registration, 4 more traffic, 2 for inflatable toys watching, 6 judges for the cars (you must be at least semi experienced with cars), 3 for security, and 4 to sell raffle tickets. Now this is the bare minimum, so the more, the merrier. The car show is open to the public from 12pm-6pm. We need all volunteers there by 10:30 am, due to the fact that cars will start coming in and registering starting at 11 am and we need to have a group meeting at about 10:35 am to get people on the same sheet of paper. Please email me back or call me at 404-348-7681 if you can help.

Praise GOD we just received a call from the Dr. in Ohio. And Anna's blood work came back fine. So we will go back to Ohio in November to get checked then we will start growth hormones. Thank you for your PRAYERS. Love you all The Dingess Crew

We are back from Ohio and are resting. We will post more info on Monday after we speak to the doctors. Thank you for your continued prayers.

Team Anna Marie

OK, so most of you know by now the disease of Pseudotumor Cerebri and the battle we have been fighting to get her better. Now to add a little bit of fun to the mix. Anna Marie's dad, Mark Dingess is in the process of organizing Team Anna Marie. What is Team Anna Marie? It is a team designed and inspired in dedication to Team Hoyt. We are athletes dedicated to spreading awareness of Anna Marie and Pseudotumor Cerebri. Mark is currently training to run in the ING Marathon in Atlanta in March 2009. In 3 weeks, he is running the Peachtree City Classic 15K (9.3miles) and intends to run in the Atlanta Thanksgiving Day Half Marathon (13.1) miles. At these events, we will have volunteers passing out fliers, soliciting donations and making people aware of Pseudotumor Cerebri and Anna Marie. This is your chance to become a fan or participating athlete from the ground floor. Please support Team Anna Marie. Team Anna Marie merchandise may be added in the future. So if we can work out those logistics, make sure to order and become a fan. Click the link on the left side of our home page or you can click here and go to the site. Please let all your friends and family know about Team Anna Marie and participate as a fan.

Bad News

Today, we got a call from Dr. Katz's office in Columbus, OH. Anna had some blood work done and the results were that she failed every test that they ran on her. Anna will need to go back on Thursday to Ohio to see Dr. Katz. Just when we thought we had her back for a while, back she goes. Please be in prayer for Anna and family as we have to make the venture back. Also, this being very unexpected, we hope you'll be led to contribute financially. Just click on the donate button and contribute any amount you feel led to. Mainly, just be in prayer.

WE ARE HOME!!! Praise the Lord!! Dr Kosnik released us to come home, we will take Anna to Dr Ashley O'Shields on monday for a follow up to check on her stiches. Then we will go back to Ohio in 2-3mths. We will start growth hormones once we go back in a couple of months. If you would like to come see Anna on saturday she will be able from 3-6. If you have any questions please call 678-201-3989.

Thank you and we love you
Joy & Anna Marie

We've had many emails wanting to help with the mattress,sheets and donations. Please take all your questions to Lisa. She is going to be our point of contact. Thank you for all your help. Lisa # 678 201 3989 or lsgr18@yahoo.com.

Anna and Christian were released from the hospital and now we are resting at the hotel. We go to the neurosurgern's office at 2:30 then we will update and let yall know when we can come home. We will update tomorrow :}

We moved out of PICU to the neuro floor last night around 7. Anna's blood pressure has been stabilized since about midnight. Praise The Lord.. Anna's only issue this morning seems to be her pain is really high. However she is doing good other than that. We might get to come home on friday :}. And if you did ecards and we get discharged they will mail them to our house... Well thank you for your contiued prayers and we will update tomorrow after the doctor's appt.

We love you all,
Joy Anna Marie

Please send a card to Christian

Hey all,

Thank you for the response to the ecards that have been sent by you. To date, Anna has received 105 ecards wishing her get well sentiments. Thank you so much for all of your support. Anna absolutely loves getting cards and it has certainly brightened her spirits despite the pain.

Now I have another request. Christian Newell is a young man from Savannah, GA. We have made really good friends with them. He is also in Columbus, OH getting the same brain surgery as Anna. To date, he has only received 8 cards. What a ministry and friend we can be if you all could send him a card. I know that we have already asked a lot from you all, but please step up and do this for us as well and help brighten his day. Once again, you can access the website by clicking on here. It is free and takes 5 minutes of your day. Please do this for him and his family and brighten his day.

Name: Christian Newell
Ward: PICU (He is probably not in PICU, but they will send to his new room.)

Once again, thank you for your continued support and God Bless.

They moved anna out of PICU and down to the neuro floor. Her blood pressure seems to fluctuates when her pain is increesed. We haven't seen the dr yet b/c he is still in surgery. We will update again later and if you did an ecard they will bring them to her new room and when we leave if there are any left they send them to your house?

Please continue to pray as Anna blood pressure doesn't seem to want to be normal it keeps going up then dropping. We are staying in PICU and will be here till tomorrow or until her blood pressure levels out.

Christian is doing great and his website is www.Caringbridge.org/visit/christiannewell
Thank you all for praying for him too.

Thank you for your Prayers. Anna is doing much better, her blood pressure came up and now she is sleeping. Which she has done alot of today!! We will see how she is doing tomorrow to see if they let us go back to the hotel. We will update you all tomorrow and let you know how she is doing. Thank you for your continued prayers.

IMMEDIATE PRAYER PLEASE

Anna had surgery again today and even though she is out of surgery, her blood pressure has just started falling at a rapid pace. They are currently trying to stabilize her, please be in prayer for her. Remember to please send her a e-card. It's free and takes 5 minutes, you can send her one by clicking here.

Hello all, Anna and Christian had a good day! We went to one of the nurses parent's house for a dinner, it was nice to have a home cooked meal.

Please if anyone has Marriott points (we are staying at Towne Place Suites in Gahanna, Ohio)or wants to donate room cost for us let me know, we are charged only $49 a night but it adds up when you are being charged for (currently 13) nights. The hospital is no longer comping rooms for us.

Surgery is tomorrow, 12 for Anna and 2:30 for Christian, Please pray for them, the surgeons and the staf that will be caring for them.

Thank you and we love you all
Joy & Anna Marie

We are having our second surgery tomorrow at 12. I think she is getting nervous because her behavior tonight is not the ordinary. Her right side is swollen and her eye is black and blue but other than that she is doing good. Please continue to Pray for Anna and Christian. Thank you for helping us out it is very expensive but God is providing and showing me not to worry because he is the one to worry not me.
Remeber you can make Anna ecards by going to Nationwidechildrens.org or you can send her an email at Annadingess@yahoo.com

Just wanted everyone to know that Anna was released last night from the hospital and we are back to the hotel they have moved her surgery from Wednesday to Monday so all the cards yallsent she will recieve on Monday!! Thank you for all your prayers and support.

Good afternoon, Anna has had a pretty good day. She is now finally sleeping PTL!! I just wanted to let you know that you can go to the hospital's website and make ecards and they print them and bring them up at 9:30am every morning. Here's the website to create a card for her, its a completely free service. We are still in the ICU but only b/c there a no rooms on the neuro floor and Dr Kosnik only allow's his patients to be in the ICU or on the neuro floor. WE will update again soon

A New Matress and White Sheets

I know this is completely random from the updates we have been giving. The Doctor has informed us that we need a new matress and white sheets. The reasons being that having had brain surgery, old matresses literally have bed bugs and the dyes from colored sheets can be harmful. This is an expense that we also obviously need help with. Thank you to everyone that has already helped us both prayerfully and financially. If you know of a matress outlet that will donate a matress and white sheets, or can give us a really cheap deal, or if you feel led to help us financially with it, we would really be appreciative.

Just wanted all to know they put Anna in ICU just so she can have one on one care. However she is doing great!! Praise The Lord!! God is so GOOD! Please continue to PRAY for Christian he is not handling the pain very well and had to keep him in recovery longer. We thank you for your continued prayers as today is the first surgery and next week they will do the other side.

Well we are out of surgery doctor just came out and said that anna did well during surgery and he put a little more numming cream on there to help with the pain. We are now waiting to find out if they are going to put her in ICU or a regular room. They just took Christian back so it should take about 2hrs for him. Thanks for all the PRAYERS and support you can email annadingess@yahoo.com

Good Evening,
Well Anna just went to bed! Wow was it a day we stayed at the hotel and relaxed. Then about 1:40 we decided to take a walk we went down to the strip then we returned Ann Sims had arrived from the airport. So we set around and talked for a couple of hours then we went outside to play. At 7 we went to dinner then after dinner guess what we did we went swimming till 11:45. Then we came back to the hotel room let anna have a brownie and chocolate milk. Special night!!! Well I will update after the surgery tomorrow. If you would like to email anna you can @ annadingess@yahoo.com. Thanks for all your prayers and support. love you Joy

Yesterday's Dr visit and Surgery Change

Good morning sorry I didn't get a chance to write this last night. Well our first Dr's appt was with the Encrin. As most of you know Anna doesn't have any human growth hormone b/c the fluid flatten her putarity 2 yrs ago and it caused it to quit producing HGH so we did a ton of blood work to see what other hormones are not working and to find out what step we should next. However post surgery once we figure out how she is doing we will start growth hormes (HGH) on a very small dose. So it looks like we will be coming to Ohio allot. Also as most of you know Emory wont touch Anna that's why we are up here. So we can get her the treatment she deserves and needs. Okay so that was the first Dr. Then 2nd was the Nuero and they are now saying she could have secondary migraines b/c of the psuedotumor. So after 1month after surgery we will wean her off of the Topomax (Praise the Lord)! And see if she does have headaches or if it was just the pressure. Then we headed back to our "quarterback" Dr Katz. Wow is he the man, he has contacted every Dr we have been to and discussed our plan to make sure it the plan he wants for Anna Marie. So he is on board and will keep going. Well to call our night we went to Dave and Busters for my birthday and one of the lady's from the office made me a chocolate cake (wow) and then she came and celebrated with us. Well that was our day in a nut shell. O yes the moved the surgery tomorrow b/c of an emergency that came in. So surgery will be at 1200 tomorrow.

My Quiet Time this morning

Well I was reading Romans 8 and I was reminded once again how Great our God is. And how he knew there would be times when we would go before him and didn't know what to say so he sent the holy spirit down to intercede and go to the father and tell him our heavy hearts. Wow I needed that this morning.

We had a great weekend

We went to Buffalo to see Christians family. We had a blast, we went to his great grandma's house first and surprised her then went to his aunt's and surpirsed them. O what fun we had. Then off to Aunt Joy's and Uncle TOm's house we went to we were up till after midnight. Then on Sunday we took off and went to Niagra Falls wow what an experience for Anna Marie. She had a blast she wasn't even thinking of the upcoming week. WEll we didn't go to bed until after midnight again Anna and Christian were having so much fun I just couldn't make myself put her to bed. Well today we took the 4hr journey back to Columbus and got back to the hotel and got settle then went and picked up my mom from the Airport. Then guess what we went swimming now we are about to go to bed.

MRI

Well today was an extremely long day. We arrived at the hospital at 845 for an MRI we finished @ 1145 and Anna slept until 130. Then we had to wait for the Dr to get out of surgery so he could talk to us. We spoke with him at 345 and our having our first surgery this Wednesday then the following Wednesday we will have the other side done. We then went and meet with our "quarterback" Dr. Kat and he has been orchestrating us to see all the doctors and has been following up with each Dr after every visit. WOW is he awesome. We are excited that God allowed us to come up here and meet with all these Dr's. We will update you on Monday we are going to have a fun weekend and try to not let Anna think about what's going on. If you would like to email us our email is annadingess@yahoo.com and also I had a few phone calls today on what bank we had set up its Delta Credit Union under the name Joy Anna Smith-Dingess. Thank you again for all your support and Prayers

Well What we've been waiting for!

Good Evening,

Today was very interesting. We saw the Chief of Staff at Nationwide Childrens, a neurosurgeon. He gave us some food for thought, YEAH. Today they did a CT and xray and found out that her shunt is clogged. Anna's ventricles have little to no space for the CSF to flow or drain properly (we knew that but not the why), so...He is recommending a subdural decompression, which means in "mommy speak" that he will cut part of Anna's skull out to give her brain more room to expand and function the way it is ment to. There is also a concern that Anna has Chiari Malformation which means that her cortext is falling out of her skull (the back of her head, neck area). This surgery scares the bleep out of me but I still believe that we are being lead here to these doctors that have worked with other children with this disease, The Chief called a patient who had this surgery two weeks ago and we are meeting tomorrow. I am looking forward to get the pro-cons from her mom. Tomorrow Anna is having an MRI and the first surgery will be Wednesday the 10th and the second the 17 or 22. We will be here for a while. Please if you have anymore points/miles please let me know. Also, we have bank account for donations. I thank you all. Many Blessing to you and your families...Also please pray for Austin,Alexandria & Mark as they are so far away. You can also email us at annadingess@yahoo.com

Today

Today was exhausting. We had our first appointment at 10:30 with neurosurgery. It has been a very long day. The neurosurgeon that we saw thinks that Anna needs to be shunted again. He took his time and read all of the previous neurosurgery notes and reviewed all of her films. When we met, we were with him for over an hour. We had a great meeting. He wants us to have another neurosurgery opinion from the chief at Nationwide Childrens, our appointment is tomorrow at noon, please pray for us. I am guessing we will not be home this weekend as planned do to up coming surgery. Anna is swimming, trying to relax and not think about all of this, me also! I will let you all know how tomorrow's visit goes and what the plan is...We are also here with Christian who we meet last year his website is www.caringbridge.org/visit/christiannewell.
Thank you for all your support and prayers

Dr. Katz

Hello friends and family. We met with our "quarterback" at OSU. He was amazing, he listened to us, as well as, gave some concrete suggestions. He is VERY concerned that Anna has high pressure and is speculating that Anna might need to have brain surgery to relieve the pressure. I was very surprised when he told us that if the pressure is this high non of the medications will work, so surgical intervention is his recommendation.AHHHH. We meet with the neurosurgeon and neurooligist tomorrow, pray for us! We have been exploring Columbus, and having a blessed time. We miss our daddy, Alexandria and Austin. We love you and thank you for your continued prayers and support. If you would like to email Anna you can do that at annadingess@yahoo.com

How Great God is!

Well I thouhgt yall would like to know yesterday we were sitting at the airport waiting on our 1st flight and we started talking to this very nice lady. Well then they annouced that the flight was cancelled so off to the help desk we went. I was on the phone while Wendy was in line to see what went faster and this very nice lady asked why we were going to Ohio, so Wendy explained about our children's PTC and that these are the top of the line doctors. Well we went to the next concourse to wait for 4hrs for the next doctors. Well here came this nice lady again and came up to us and said I was going to find you no matter what it took. And she proceeded to say I live 5minutes from the hospital and next time you come up you can stay at my apartment and I can go stay at my daughters which is right down the road. I would like to have lunch with you ladies this week and thank you for sharing yall's story to me. Well once again God is providing us a way to keep coming up to see the dr's. Don't under estimate the Power of God. He keeps coming thru time and time again.

Finally Here

Well after a long day at the airport yesterday we finally made it. We arrived in our hotel at 7:30 then went to dinner and to target to get groceries. Well Anna Marie had a really bad day yesterday and when we were landing on the airplane she screamed because she thought her head was going to explode. Thank you for your continue Prayers..

So tomorrow is the big day!!

Tomorrow, Joy and Anna leave for the University of Columbus in Columbus, OH. We would never wish PTC on anyone, but we are fortunate enough to be going with another mother and son. They are another family in Georgia that have PTC. Fortunately, when Dr. Katz office called, we were able to get them in for appointments at the same time. That made it easier for us to be able to have someone else there that we know.

Anna will be meeting with Dr. Katz and other Doctor's that work with him ranging from Neurosurgeon to Neurooptomologists. These guys and gals specialize in PTC, and as rare as it is, they are a great group to be able to work with. This trip come in perfect timing. The other day, on Anna's field trip with school, she was complaining to Joy that she couldn't see that well. The is one of the scary things about PTC, is it does cause blindness. So being told by your daughter that she is having trouble seeing absolutely terrified us.

We must give glory to God. He has made everything happen, from an anonymous donor donating airline tickets to us from other people helping us out financially, we know that God has his hand in all things. A big thank you goes out to the people that have helped us. A big thank you goes out to our Savior for providing. We will update tomorrow to let you know how this trip goes.

The Anna Update for 27 August 08

Anna has had a fairly good week. By good, we measure good by the severity of her headaches. People diagnosed with Psedotumor Cerebri report of having migraine type headaches on a daily basis. The reason for these headaches is the amount of pressure put on the brain due to CS fluid on their brain. Sad but true. So her "migraines" have not been horrible everyday this week, just a few days. Joy leaves next week for University of Columbus Hospital, where Dr. Katz, a specialist in the field of Pseudotumor Cerebri, will look at Anna along with a Neurologist.

Tricare (our medical insurance provider) has approved this and we are so glad that they seem to care, in an age where it seems medical insurance companies seek to fight patients care. Christian, the only other child in Georgia with this disease, was dropped by his insurance company recently forcing the parents to pay for all his treatment. Please be in prayer for this family as well, we have made really good friends with them. In fact, they will be going up to see Dr. Katz the same time we are.

Also, we ask again that you help to give to help us offset the cost of providing her with the medical attention that she needs. We ask that you consider giving what you can whether it be $1 or $1000. But more importanly than that, we ask that you pray for Anna and Christian to find a cure. Thanks again for your support.

$20 and a Prayer

So, we believe that God has told us, through Dave Ramsey's pricipals, not to go into debt for helping Anna. In response to God's wishes, we need you. We have launched the fundraiser entitled "$20 and a Prayer".

We hope that you will consider this and what we are asking is that you donate $20 and say a prayer for Anna and her mother Joy as we all fight this battle. Prayer is the most important communication that we can have with our Christ. So that is certainly more important than money. Even though, we call it $20 and a Prayer", if you can't afford $20 and still want to donate, then donate what you can. Also, if you can afford more, we ask that you prayerfully consider donating what God leads you to give. We thank you for all your doing in your support for Anna Marie!!

Dr Katz's Office called and wants to see Anna

Dr Katz's Office at the University of Columbus in Columbus, OH, called last week and wants to see Anna the first week of September along with another young man from the Savannah, GA area. So we are going to go with them and share a Hotel room. We have, thank you to the person that donated, airline tickets to go up there. As long as the tickets aren't buddy passes (aka standby), we shouldn't have a problem. If it is standby, with labor day weekend being that weekend, we may consider driving. If you would like to donate money to help with expenses it would be greatly appreciated. More importantly than money, we need your prayers that this visit will be constuctive and informative.

For donations, email us at annadingess@yahoo.com and we will talk to you about how to make that happen. Thanks for your time and concern in helping Anna Marie to fight this disease.

Just an update on the going ons up to this point

Ok, so Joy went to Houston in June and met with the Pseudotumor Research Team. What an informative and great conference they had. She got to meet other parents who go through the same stuff that we do. She also met the few doctors that actually specialize in her disease. They took interest in her case and certainly wanted to meet with Anna.

In the conference, they discussed all the different aspects of Pseudotumor Cerebri. She learned about Cerebrospinal Fluid, Neural Hydrodynamic Disorders, Neurological Shunts, Headaches associated with Pseudotumor and the new research associated with trying to find a cure. It was a very good conference and the contacts that were made there were phoenominal. Thanks to the fundraiser and especially the people involved with the fundraisers for your help in helping Joy to make this conference.

The most important aspect of this whole conference is the fact that Joy met Dr Stephen Katz who is one of the Doctors studying Pseudotumor and wants to see Anna at his offices at the University of Columbus Medical Center in Columbus, OH. They are the leading Doctors in the study of this Disease.

So we know its been a while...

We spent a couple of weeks fighting with Blogger trying to prove that we weren't spam. So they finally gave us the blog back! That took a while and a lot of aggravation and then we just got lazy and haven't been posting like we should. Well we are back and will start blogging every week!!

Anna Marie's Fight with Pseudotumor Cerebri

Anna Marie Smith-Dingess was diagnosed with Psuedo Tumor Cerebri on September 15, 2006. She is 1 of 29 children in the World that have been diagnosed with this disorder. It is generally found in middle aged, overweight black women but Doctors do not know why it is showing up in children. This is a fluid tumor around spinal cord and brain. Since her diagnosis she has two LP shunts put in. The LP shunt relieves the fluid into her stomach. Pseudotumor side effects include headaches, nausea and vomiting and permanent blindness. Anna has been seen by the outstanding doctors at Emory and at this point, they have finally said that their may not be much that they can do. The Pseudotumor may have also damaged her Pituitary Gland thus meaning she may not grow anymore. In order to help Anna fight this disorder, Anna and her mom Joy Dingess, will be attending Puesdo Tumor Cerebri Conference in Houston, Texas in June. Also, they will start meeting with a team of researchers in Ohio, in July. They will be making multiple trips this year to Ohio. They may also have to go to Houston for brain surgery to help her grow.3 Ways to get involved:

Pump it Up (A kids playhouse with many inflatable toys)
McDonough, GA
Monday, May 5, 6-8 p.m.
Tickets $10 per child

Silent Auction
Saturday, June 7, 7-9 p.m.
Heron Bay Country Club (subject to change)McDonough, GA
Advance Tickets $12 $15 at the door
(Art show and sale, entertainment, desserts, hor d'oeuvrs, drinks)


Donations:
Food
Gift Cards
Gas Cards
Money for Hotel

Plus, there are future events in the works like a Murder Mystery Theatrical Performance. If anyone has an idea on a fundraiser, please contact us.


Dingess Address:80 Bryans Dr McDonough, GA 30253