Sunday, June 14, 2009

Home from Memphis

We got home Friday from Memphis (earlier than we thought) and Brady is doing great! He was hooked up to his EEG leads fror about 48 hours and was recorded the whole time, (VEEG). That crazy kid of mine did not have the first spasm or siezure the whole time he was hooked up! But they played with his medicines and we even cut some meds out completely! Dr. Wheeles took him completely off his Phenobarbatol and Topamax and started him on Depakene (the liquid form of Depacoat). He also gave us a new ACTH schedule that will have Brady getting off his ACTH in 2 weeks!!! We should also be getting off the Hydrocortizone and Prevacid at that time too! So that will be a total of 5 medicines that Brady will be off in 2 short weeks if everything goes to plan! What a blessing!!! I dont know that I am going to know what to do with myself if I dont have to give him medicine at breakfast, lunch, and dinner! I hope this works and the Spasms go away forever and never come back!! I pray they dont evolve into another type of seizure also! I Pray this is it for all of that!! I pray he gets his personality back, he gets his developement on track, and he continues to grow and develope normally as a health boy would. We will follow up with our neurologist Dr. Parker Thursday but we will go in to check his levels monday and again the following Monday. We should go back to Memphis to follow up with Dr. Wheeles after we take him off the ACTH. I pray we go back with a different child.. completly healed of IS forever! In Jesus' Name.. Amen!
Here is Brady when they were taking him down for MRI.. he is about too big for this little newborn bed, dont ya think?
And here he is in his room.. EEG leads on his head, and IV in his foot.. sitting up in his stroller!

Tuesday, June 9, 2009

Memphis Bound tonight!

Here's a quick update on my little man ...Well, he has started having the spasms again. They have been gradually getting worse over the past couple of days so we have gone back up on the medicine that we should have already stopped!! (little frustrating) We are back up to the starting dose and everyday again. Our great Dr. Parker sent in a referral to Le Bonheur Children's Medical Center in Memphis, TN yesterday morning and we got a call this morning saying that they just happen to have a cancellation for tomorrow and asked if we could come on up... oh, by the way, the next appointment was not till late July, so this was a big deal. Oh yeah, and it just so happens that the Doctor on call all week just happens to be world renowned in his field of Pediatric Epilepsy and he come highly recommended from or Dr. here. And Chris' mom has offered her van for us to take up there to make the ride and loading and unloading much easier and Chris' cousin Katherine has offered us a place to stay tonight when we get there... (Coincidence ??? I think not) It seems like God has his hand in this one big time. It is obvious that that is where we need to be this week so we are packing now! We have to be there at 5:45 IN THE MORNING!!! for the start of many test.. MRI and EEG tomorrow morning. We will be staying in the room with him all week (4-7 days). The rooms are equipt with beds for 2 adults, a fridge, and microwave so we dont need to rent a hotel or anything. Chris will be taking us up there and getting all the info tomorrow and then my mom will come up to stay with us to help out with Brady.. He will be hooked up to his EEG leads for a while and I am not to sure how that is going to work.. now that he is rolling around and pulling at things. We are hoping to be back Sunday with some new Plan of Action. So please keep us in your prayers, expecially my Brady. We want these siezures and spasms to stop!! Pray for us as we travel, my mom too! I will keep you updated with any news as soon as I get a chance. Pray Pray Pray!