Friday, October 31, 2008

Ryan's pumpkin

Ryan and daddy had fun carving this pumpkin

Tuesday, October 28, 2008

Tough day

Ryan is getting a cold and it really wipes him out. He had physical therapy this morning and was having a hard time walking. He was back to toe walking, dragging his feet, looking tired and weak, and tripping. He continued to do this the rest of the day. He has this other thing that he has started lately and that is taking his left shoe off. He leaves the right one on. Not sure why he is doing this- he doesn't say it hurts. I am going to ask PT about it on Thursday.

Thursday, October 23, 2008

PT is helping!

Ryan had physical therapy today and they are happy with his progress. He continues to improve weekly.

Wednesday, October 22, 2008

Weaning off Keppra!!!

We have started to wean Ryan off his Keppra. We will cut his dose by a 3rd for the next 3 weeks and then he will competely off! We are to continue to monitor his fatigue and weakness to see this improves. He will be competely off by Nov. 12th and will have a repeat EEG Dec. 12 as a routine thing they do after stopping a med.

Tuesday, October 21, 2008

The results are in!

I happy to report that Ryan's EKG, MRI of head & spine, and his EEG are all NORMAL!!! I have not gotten to talk to the neurologist yet, so I don't know the plan of weaning his anti-seizure med yet, but do know that we will now get him off his med! Yeah! The neurologist's nurse has to call me back when she gets the results of his blood work. One lab will not be back for about a month- so I won't know that one for awhile. Ryan is starting to show a little improvement from going to physical therapy and wearing orthotics. He is now able to ride a bike and can jump without needing help. There are still other areas to improve on, but we will get there. We are very happy with these results!

Got a call back from the neurologist's office and all the labs that are back are also NORMAL! We only have the one lab that takes a month to get back to wait for now. That lab is a DNA genetic test and that is why it will take longer.

Friday, October 17, 2008

Ryan's big day

Today is Ryan's big day at Children's Hospital in Mpls. Ryan will have is EKG, MRI of head and spine, labs, and EEG done. I will update on how the day went when we get home.

We left at 6 am and got home at 7:15 pm- it has been a looong day! Ryan was a trooper! At 8:45 he had his EKG- I filled out the paperwork and RJ took him in the room to have it done. Ryan didn't mind it at all. Then we had to wait around until 9:30 to go get ready for his MRI of his head and spine. I used to work at the Children's hospital and haven't been there for 3 years, so everywhere we went I would run into someone I use to work with. It was really nice seeing them again. Ryan got his IV started and they drew 12mls of blood- he cried a little, but did very well. His MRI was suppose to start at 10:30, but it didn't until 10:50. Ryan was doing well with the waiting until about 5 minutes before and then he was running out of the room wanting juice and to go home. He didn't care that he had an IV in his arm. The last time he had anything to drink was 7am and hadn't eaten since 7:30 pm last night. He did very well with this. We took him in the MRI room and they gave him his sedation in his IV and he fell "asleep". RJ and I ran and got something to eat and 1 hour 30 minutes later he was done. It took Ryan a little longer to wake up than "normal", but I think he was tired from being up at 5:30am. Then we had to wait around until 2 pm for his EEG. He did very well with this also. We stopped on the way home and bought him a toy for doing such a good job. We also went out to eat- so we could have been home alittle earlier, but the thought of trying to find something to cook was not something I wanted to do. We should hear back about the MRI and EEG by Tuesday (that is a guess). They told us his EKG was perfectly normal- so no heart problems- yeah! The blood work, we will get some results right away, and others will take at least a month. He had some DNA (genetic) tests done and they take longer. I will be really surprised if anything is abnormal- I still believe his seizure med is to blame, also being sedated for 4 days and having drug withdrawls may have something do with his weakness and low tone. So I will update when we get the results back. Thank you for all keeping Ryan in your thoughts and prayers. I am relieved this day is over!

Tuesday, October 7, 2008

Foot Orthotics

Ryan was fitted for foot orthotics and now he has to wear his shoes from breakfast to supper- this will be hardest for mom- allowing shoes on in the house.

Gillette Appt

I am finally getting an update done. We had Ryan's appt at Gillette on Sept. 25th. We met with the Dr. who is medical director or Rehab- I have worked with him when I worked at Children's. He looked Ryan over and asked lots of questions about his medical history and ours. He agreed with everything we already know- low muscle tone, more flexible that he should be. He recommened foot orthotics (braces for his shoes) to help support his ankles. He wants the rest of his tests done and the results. We have an appt for follow up in 3 months or if something changes- sooner. So, we didn't learn anything new, but that is okay.