Yesterday was my husby's 24th birthday. I made him roast, potatoes, and carrots for dinner then we took Dillon to a couple in our church for them to babysit him for a few hours. Josiah and I went to a theatrical production of "A Christmas Carol" in Allentown. It was very good and it was nice to get away for a little bit. On the way back to get Dillon I really wanted a hot fudge sundae from McD so we got cheeseburgers and ice cream and ate it on the way.
Dillon only had 1 big seizure (10 minutes) and maybe 2 little ones yesterday but so far today he had one at 2 am, 5 am, and 1 pm (none of which seemed to last more than a couple of minutes). The biochemist said since we are seeing improvement he is pretty sure it is working that we just need to give it more time to fully kick in. This makes sense as I have been told natural things can take up to six weeks to take full effect. Natural medicine is not as harsh as the drugs which are therefore "effective" more quickly.
Please continue to pray that the seizure will stop - SOON! I was feeling so excited yesterday that he made such improvement but today I am a little down again since he has had a few more. I guess it could be a bit of a roller coaster until it takes full effect. Also, it may be a little early to start worrying about this but: please pray for full cooperation from the neurologist when I tell him what he have been doing. If this stuff works - I will want to try to lower the drugs he is on so please start praying that the doctor will be understanding to this.
Friday, December 15, 2006
Monday, December 11, 2006
I didn't forget about Blogger....
Wow! It has been a LONG time since I last posted. I am sorry to any one who looked for updates and they haven't been there. I might miss some things since I am trying to cover so much in this blog.
1. Dillon's hearing aids are doing well. He seems to be able to hear with them. I have seen him turn to my voice a few times but mostly we have seen reactions in his hands and face to know that he hears. He seems to like music - especially kid songs like I was playing for him this morning.
2. My parents came for a visit. It was so nice having them here. My mom helped with cleaning and keeping me company and my dad made meals, washed dishes, ran errands, etc. They were a big help.
3. Thanksgiving was nice. We went to Boston to see Dillon's Great Great Grandparents (that is not a typo they are his great-great grandparents.) It was a lot of fun. Dillon liked sitting on Grandpa's lap for hours while he talked to him - Dillon even started talking back a lot. I think he enjoyed all the attention.
4. We have new hearing aid molds for Dillon and he gets a new pair on Dec 20 when he goes for another hearing test. It is amazing how much difference there is in the size of his ear!
5. The eye doctor in Philly (at a special eye center) said that Dillon IS responding to light. At first he didn't even do this. However, most blind people do have some degree of light perception so this does not mean he is seeing. It does mean, however, that he is making some progress.
6. Since Wed. Dec 6 Dillon has been having seizures. They think they let him out grow the medicine. He was only 7-8 pounds when they put him on Keppra and as of Thursday he is 11 lbs 6 oz. We took him to the ER on Friday, they gave him an IV with Dilantin (sp?) and increased the keppra even more. He has still been having them but they don't last as long and don't seem to be as strong. (We know he is having one because he pulls his arms into his chest very tight then relaxes and does this for 4-8 minutes and then stops. He also turns his head to the right every time his arms come in. I can hold him but I cannot try to stop the movement as that can cause more damage to his body.) Needless to say it has been a very hard couple of days - I never would have imagined how hard it is to watch your precious little boy go through seizure after seizure and be told by doctors "There's nothing you can do you just have to wait them out." HA! I would like to know if any of them have ever had to do this!
7. Josiah isn't working two jobs anymore the night one fired him for KISSING ME. Yeah you read that right they actually fired him for kissing his wife when I came to see him one night - is that not stupid? I told Josiah that he wouldn't have been fired for kissing another guy because that is be intolerant but for kissing his own WIFE that is grounds for dismissal. What is our world coming to!?!? Instead he is working 12 hours a day at his other job. This might be better as he can start at 7 and come home then at 7pm.
8. Well I am sure that is not all – but that is all that I am going to write for now.
1. Dillon's hearing aids are doing well. He seems to be able to hear with them. I have seen him turn to my voice a few times but mostly we have seen reactions in his hands and face to know that he hears. He seems to like music - especially kid songs like I was playing for him this morning.
2. My parents came for a visit. It was so nice having them here. My mom helped with cleaning and keeping me company and my dad made meals, washed dishes, ran errands, etc. They were a big help.
3. Thanksgiving was nice. We went to Boston to see Dillon's Great Great Grandparents (that is not a typo they are his great-great grandparents.) It was a lot of fun. Dillon liked sitting on Grandpa's lap for hours while he talked to him - Dillon even started talking back a lot. I think he enjoyed all the attention.
4. We have new hearing aid molds for Dillon and he gets a new pair on Dec 20 when he goes for another hearing test. It is amazing how much difference there is in the size of his ear!
5. The eye doctor in Philly (at a special eye center) said that Dillon IS responding to light. At first he didn't even do this. However, most blind people do have some degree of light perception so this does not mean he is seeing. It does mean, however, that he is making some progress.
6. Since Wed. Dec 6 Dillon has been having seizures. They think they let him out grow the medicine. He was only 7-8 pounds when they put him on Keppra and as of Thursday he is 11 lbs 6 oz. We took him to the ER on Friday, they gave him an IV with Dilantin (sp?) and increased the keppra even more. He has still been having them but they don't last as long and don't seem to be as strong. (We know he is having one because he pulls his arms into his chest very tight then relaxes and does this for 4-8 minutes and then stops. He also turns his head to the right every time his arms come in. I can hold him but I cannot try to stop the movement as that can cause more damage to his body.) Needless to say it has been a very hard couple of days - I never would have imagined how hard it is to watch your precious little boy go through seizure after seizure and be told by doctors "There's nothing you can do you just have to wait them out." HA! I would like to know if any of them have ever had to do this!
7. Josiah isn't working two jobs anymore the night one fired him for KISSING ME. Yeah you read that right they actually fired him for kissing his wife when I came to see him one night - is that not stupid? I told Josiah that he wouldn't have been fired for kissing another guy because that is be intolerant but for kissing his own WIFE that is grounds for dismissal. What is our world coming to!?!? Instead he is working 12 hours a day at his other job. This might be better as he can start at 7 and come home then at 7pm.
8. Well I am sure that is not all – but that is all that I am going to write for now.
Subscribe to:
Posts (Atom)