Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Aaron UPDATE: 11-9-07 Hello again I have a few minutes out of my hectic days to post an update. Aaron is undergoing surgery on the 30th of November. He is having another EGD and Bronchosopy. He is also going to have a muscle biopsy. The doctors suspect that Aaron has a mitochondrial disorder and are hopeing that this test will give them a better idea as to which type. Aaron had some food allergy testing done and I will post those results as soon as I know anything. Aaron is now 6. I have begun to homeschool him. We are starting out slow but he is doing well. His upper body strength is improving although he remains unable to "correctly" hold crayons and pencils. He is still in OT,PTand ST, and is making progress. He is becoming more understandable to others ( mostly family) but is (in my opinion) doing well. I am hopeing to get some answers but not expecting them. Thank you all for the thoughts and prayers. Gracie UPDATE: 11-8-07 We were off line for some time due to his illness thingare not goingwell for us right now I hope to be able to post more very soon awaiting test results I will try to get his pic up here also Please keep him and our family in prayers My eldest daughter is 8 and has been having a hard time dealing with this she has witnessed the deaths of so many people she loves including her baby brother, her papa and now her great grandpa is dying of cancer and is in the ICU please keep us in your thoughts. Gracie UPDATE: 5-17-06 Hello all I would like to ask for prayers once again as Aaron is undergoing surgery on the 18th of May He is havinf and EGD with biopsy of the stomach and a bronchoscopy with biopsy of the lungs and also having a g - tube put in and having yet another brain MRI so please pray that all goes well and please if any one has any info on g-tubes please let me know he is having a PEG tube put in first then we have to wait 6 weeks for it to heal then the will put in a MIC-KEY tube so if anyone has any helpful tips please let me know. If you would like to send Aaron a card please send him one he would like it. Send them to Aaron C/O Gracie Dudley 1844 west 4th street Ashtabula Ohio 44004 Thank you Gracie UPDATE: 4-25-06 Hello I just thought I would post an update. Aaron is doing well today. I got his tests back ( metabolic and found out that he has high levels of taurine and pyruvate in both bllod and urine so I still have no idea what they mean but that is ok because I will find out today because the doctor is going to call later. I don't like the fact that they are basing everthing on motor skills and speech as to his level of inteligence because he is very bright. He is 4 1/2 but they say he is functioning about 18 months in all areas!! even his teachers and therapists say he functions much higher. I finally feel we may be getting somewhere with the metabolic and genetic things. Keep up the prayers it is working!!!!!   Gracie UPDATE: 4-22-06 Well we are finally home but only for 2 weeks then we go back to have a feeding tube put in I can't believe all the things that have been going on please keep us in prayer as the Dr.'s still aren't sure just what is going on with him. O2 levels are back up and Aaron is doing fairly well. He is very happy to be back home. We are having alot of testing done including an EGD and bronchoscopi along with a sleep study. I just hope they find out what is wrong. They said they found something in his urine ( metabolic) but wanted to retest again just to be sure they haven't told me what they found only that they want to retest to be sure. I will post more when I find out. Gracie UPDATE: 4-12-06 Hello all just an update Aaron was put into the hospital yet again due to pooor O2 levels on April 6th just got out Monday I think we are finnally getting somewhere they are going to put in a feeding tude so we are staying at our home away from home the Ronald Mcdonald house if it weren't for them I would be at a loss. Aaron is going tommorow for a whole GI work -up and after that they will do a complete metabolic work-up on him to determin where to go as for the O2 levels he will also be having a sleep study done so I finally think we are getting some where. I could not pay my email payment so I will be offline until I can I am using the computer at RMH for now please keep us in your prayers thank you Gracie UPDATE: 4-4-06 Hello eveeryone just an up date  The girls have had the Flu?? or something Maybe food poisioning but has finally passed Aaron PRAISE THE LORD did not get sick so we are thinking that the batch of milk the girls had may have been the culprite as Aaron can only drink rice milk or neocate ( which he won't drink ) I have contackted a nothe dr. in Chicago ( 10 hours from where we live) but have not been able to find a way to get him there please pray that we will get the financing we need to get Aaron to this Dr. he specializes in this type of Nuerological disorder. We are also looking for some kind of swing for him so he can go outside and play with his sisters. We just got medicaid to approve his  wheelchair after almost 6 months of trying so the guy just left after taking all of the measurements. If anyone can give me info on getting a portable nebulizer please let me know I have to carry his bigger one with us and finding a plug isn't always easy!!! He is still requiring treatments every few hours not sure if it is the change in weather or not but hopefully he gets better soon. I want to thank you all for the prayers and thoughts. Still have no pain meds for him as nothing seems to work. They are thinking now about TENS so I don't know but I am hopeing to get some news from this Dr. in Chicago. I don't know where we will stay or anything but God will find a way for us to get him there I have faith.   Gracie UPDATE: 3-30-26 Hello this is my first time submitting a prayer request. this is for my 4 yo son Aaron Aaron has multiple disorders including Arnold Chiari Malformation, EDS, Epilepsy, He underwent brain surgery to relieve the pressure on his brain stem but his stats are dropping back into the 60's again he is on 13 medications but has not helped he refuses to eat and has trouble with liquids ( aspiration) no one knows what else to do for him. He had the bottom portion of his skull removed in September to make more room for his brain he is having difficulty breathing and is constantly asking for his " breather" He has been needing it almost every 2 hours they want to place a feeding tube in him but his home health nurse says not to let them because he needs to eat. He only weighs 28 lbs my 3 year old weighs 34 so I know he isn't getting the nutrition he needs he is allergic to lactose , whey, soy and also has celiac so we have no idea where to begin looking for something he can eat with out causing him trouble he also has GERD and erosions on his esophagus. I am at my wits end I feel so bad he is in so much pain he screams for hours and they have tried him on every type of pain meds out there for him they are thinking of a morphine pump?? so please keep us in your prayers as we try to figure all this out.   Thank you Gracie UPDATE: 3-10-06 Hello every one I wanted to kinda keep you informed on my sweet boy Aaron. I wasn't sure what to say when I added him to this list but I guess I should give you some back ground info. Aaron was born with Arnold Chiari Malformation a rare nurological disorder where the brain actuall doensn't fit inside the skull and falls down between the base of the skull and the brain stem. He has had surgery to remove the base of his skull and has had C-1 and C-2 shaved down to make room for this "slumping" of the brain his Brain stem has been compressed so much that at times Aaron has stopped breathing for 3 + minutes. He also has been diagnosed with epliepsy and numerous other things. Please keep Aaron in prayer as the Doctors are not sure just how much damage has been done to his Brain, Nerves and other areas of his system.   Also keep my family and our angel Daniel Angelo In prayer also my son Danny was born August 27th 2004 and went to live with Jesus August 28th 2004 due to Hypoplatic left heart syndrome so I am feeling very over whelmed at the thought of losing my only remaning son. Also keep my girls in prayer as the deal with this Julia (7) and Haley (2) Julia is having a hard time still with the death of her baby brother Danny and talks about him constantly. PLease keep us in your prayers thank you  GracieAnn ADDED:3-9-06 Condition=Has Arnold Chiari Malformation, GERD, Brain injury Comments: Please keep him in prayer,