- Joined
- Feb 23, 2012
- Messages
- 180
Just wanted to pop in and say hi to everyone and give a little update on Kota.
I am not sure where to start. Today is 2 weeks since his last dose of Entocort. This is the longest he has been off steroids in 22 months. We went last week to see Crohn's specialist. Let me just say I still totally love this doctor. He is so much different then Kotas first dr. We have been trying to wean off the steroid for about a year and never had any luck. Ko always ended up back in the hospital.
Dr.P wanted him off of steroids completely before doing anything. When we went in last week he was so happy we had been able to completely wean. So he said we needed to get him in to have an MRE asap. We go tomorrow to have it done. Praying Ko can drink everything he needs to drink. Last time he threw up after trying to drink it. Dr said he could be put to sleep to do test but Ko said no he wanted to be awake and he would try his hardest to drink it all. After we get these results we will know what our next plan is going to be. Dr P doesn't want him being untreated with nothing for very long. Not sure if we will start remicade or do a resection.
Ko is starting to be really achy all over again
. He says it just hurts to even be touched. He said his hands and feet feel like they are asleep a lot of the time. Labs were a little off last week but Dr said nothing to worry about.
Since I last posted we applied for disability for Kota and he was accepted. Thanks goodness. We are waiting now on getting him a wheelchair delivered. He cant walk very far without crying in pain. Broke my heart Halloween that he didn't get to go trick or treating. He went to a couple of houses and was crying in so much pain. He said momma I didn't even want the candy I just wanted to go. He says I don't know why I even try. I am never going to feel good or be normal. Why cant I be the way I use to be. It just broke my heart hearing him say that.
Most of the time he doesn't feel like doing anything. Even going to the grocery store is hard on him. He usually rides in a wheel chair. We decided to go looking for Christmas decoration last weekend and he wanted to go. I was excited he wanted to get out. So we told him he could ride in the wheel chair at the store since we don't have his yet. So we are looking at decorations at Garden Ridge. We have been in this store several times. He always rides in the wheel chair. He always stays right with me or husband. To many crazy people in this world. Well this time an employee of the store came up to Kota and told him very rudely he needed to get out of the wheelchair. They are not for kids or to be played in. Ugh some people. It totally crushed Ko and he said see momma that's why I just stay at home. Some people need to think before they open their mouth. Steve (husband) was so mad. Usually mama bear handles it but this time I didn't have time Papa had it under control.
We started seeing a new Nuero doctor. New dr thought some of Ko headaches maybe actually seizure related. So he was started on anti seizure meds a couple of months ago. It seems to be helping his headaches a lot. He had what we think was one of his worse seizures a few days before starting meds. He was just walking and fell to the ground. When we got over to him and got him back coherent. He had no idea what had just happened and didn't want anyone to even touch him. So not like him. We go back to see Nuero the 20th. He is looking over old MRI and seeing if he thinks the same as the old Nuero about Kota's malformation that's on his brain.
I hope everyone had a wonderful Thanksgiving. I know we did. We have so much to be thankful for. Merry Christmas everyone.
I am not sure where to start. Today is 2 weeks since his last dose of Entocort. This is the longest he has been off steroids in 22 months. We went last week to see Crohn's specialist. Let me just say I still totally love this doctor. He is so much different then Kotas first dr. We have been trying to wean off the steroid for about a year and never had any luck. Ko always ended up back in the hospital.
Dr.P wanted him off of steroids completely before doing anything. When we went in last week he was so happy we had been able to completely wean. So he said we needed to get him in to have an MRE asap. We go tomorrow to have it done. Praying Ko can drink everything he needs to drink. Last time he threw up after trying to drink it. Dr said he could be put to sleep to do test but Ko said no he wanted to be awake and he would try his hardest to drink it all. After we get these results we will know what our next plan is going to be. Dr P doesn't want him being untreated with nothing for very long. Not sure if we will start remicade or do a resection.
Ko is starting to be really achy all over again
. He says it just hurts to even be touched. He said his hands and feet feel like they are asleep a lot of the time. Labs were a little off last week but Dr said nothing to worry about. Since I last posted we applied for disability for Kota and he was accepted. Thanks goodness. We are waiting now on getting him a wheelchair delivered. He cant walk very far without crying in pain. Broke my heart Halloween that he didn't get to go trick or treating. He went to a couple of houses and was crying in so much pain. He said momma I didn't even want the candy I just wanted to go. He says I don't know why I even try. I am never going to feel good or be normal. Why cant I be the way I use to be. It just broke my heart hearing him say that.
Most of the time he doesn't feel like doing anything. Even going to the grocery store is hard on him. He usually rides in a wheel chair. We decided to go looking for Christmas decoration last weekend and he wanted to go. I was excited he wanted to get out. So we told him he could ride in the wheel chair at the store since we don't have his yet. So we are looking at decorations at Garden Ridge. We have been in this store several times. He always rides in the wheel chair. He always stays right with me or husband. To many crazy people in this world. Well this time an employee of the store came up to Kota and told him very rudely he needed to get out of the wheelchair. They are not for kids or to be played in. Ugh some people. It totally crushed Ko and he said see momma that's why I just stay at home. Some people need to think before they open their mouth. Steve (husband) was so mad. Usually mama bear handles it but this time I didn't have time Papa had it under control.
We started seeing a new Nuero doctor. New dr thought some of Ko headaches maybe actually seizure related. So he was started on anti seizure meds a couple of months ago. It seems to be helping his headaches a lot. He had what we think was one of his worse seizures a few days before starting meds. He was just walking and fell to the ground. When we got over to him and got him back coherent. He had no idea what had just happened and didn't want anyone to even touch him. So not like him. We go back to see Nuero the 20th. He is looking over old MRI and seeing if he thinks the same as the old Nuero about Kota's malformation that's on his brain.
I hope everyone had a wonderful Thanksgiving. I know we did. We have so much to be thankful for
. Merry Christmas everyone.
