Update

I ended up calling Ryan's neurologist and we got him seen yesterday. We first went to PT and she confirmed that yes there is something wrong with Ryan. He has hypotonia (poor muscle tone) and not only is his legs weak, but his neck and arms are also weak. I felt good knowing I wasn't crazy. Ryan is also very flexible- more than he should be. We then went to his neurologist appt. and he actually spent time with us. He says this is not from his anti- seizure med and that we need to do some more testing to figure this out. So Ryan will be getting PT 2 times a week, braces for his feet, an MRI of his head and spine, an EKG- to make sure his heart muscles are okay, and EEG- to try and get him off his seizure med in case it is doing something, a whole bunch of labs- including genetic testing and to rule out Musclar dystophy, and will be going to Gillette Hopsital to see an Orthopedic dr. - to make sure it isn't anything from that point. At PT the therapist said Ryan is walking with his hips, not his thigh mucsles that is why he looks like he is walking inward. Ryan is doing a good job at compensating, so we don't always see the things with his arms and neck. RJ and I are a mess we are trying to take each day at a time. The thing that really sucks is his tests will not be done until Oct. 17th! That was the soonest they could get him in at the Children's hospital (where I use to work) for his MRI under sedation (which this what I use to do there). My brain is trying not to think the worst- but it is hard. I thank all of you very much for your thoughts and prayers! Ryan is doing great- he thought PT was fun- got to run around while we watched.

Walking problems

I took Ryan in to the doctor today because he continues to have more and more problems with walking. He use to walk with his feet inward- which is a very common thing with kids when they first start walking and they usually grow out of it by 3 yrs. But now he is walking (when he does) on his toes or the front of his foot, at times will drag his feet (when he is tired), has now has started to trip more, and his feet are very inward now. He will walk short distances and then wants to be carried because he is tired. RJ and I and others have noticed a big change in the last 2 weeks. He is walking like he did when he very first learned how to walk. When he runs he has to use his arms a lot to keep his balance. He will be seen by physical therapy and I will know more from there, but our Dr. who I trust very much is worried that he is having muscle weakness that could be developing something as serious as muscular dystrophy. I am trying to not drive myself crazy with the what ifs. I haven't even looked anything up. I don't believe he could have MD. If he has to wear braces to fix this I will be more than happy with that if that is all it is. RJ and I have been watching this ever since he was hospitalized a year ago and just have felt something not "right".

One Year Ago...

Ryan had his last seizure!!!! I am so happy that he has gone a year without having one. He is still on medication, but on such a low dose that if he was gonna have one, he would have by now. One year ago today, my little boy was on a vent. sedated- it brings back a lot of emotions.

Neurologist Appt.

Ryan had his neurologist appt yesterday and things are looking very good. He goes back in Jan. 09 (6 months) and will have his EEG done and if that is normal he will go off his meds!!!! I know in my heart everything is okay and he will be/ is fine. I feel safe to say Aug. 14th he will be seizure free for 1 year. His dose has not changed since he was 18 months and he weighed 22 lbs. He is now 30lbs! He has gained 3 lbs in the last 6 months- I was shocked at this. He has always been a peanut. So in a way he is already weaning off the meds. We had a good day. We had a very nice brunch with my aunt before Ryan's appt. His appt is 1 1/2 hours away from home, near the Mall of America and Ikea, so we went there for awhile and then went to another aunt's house and went swimming in her in ground pool- very nice since it was 94 degrees with an heat index of 100! Before making the trip home. Just thought I'd update. Oh and I almost forgot the neurologist was very impressed with Ryan- said he was very smart and cute- melts my heart. I know that he really meant it and wasn't just saying- I used to work with this Dr. and he doesn't usually say much.

Neurologist Appt.

We had Ryan's neurology appt yesterday. Last time we were there the Dr. said he felt Ryan would "grow out" of his seizures by age 2, so I was hoping we would start weaning him off his med. Well, he told us yesterday that he wants to keep him on it for another year. I was really bummed. We go back to see him in 6 months (July) if no seizures than we make another appt. for 6 months later and have an EEG and then he will decide to take him off his med. He wants him to be on meds. for 18 months since that was how old he was when he had his "bad" seizure. At least I know he has been seizure free for 5 months now and that is the important part. I just wish we didn't have to drive 3 hours to meet with the Dr. for 5 minutes to find out nothing has changed.

Neurologist

I am happy to report went very well! He had his EEG redone- which he hated every minute of and then we met with the neurologist. His EEG was normal again- yeah! The Dr. explained it to us like this- 1 out of 50 kids have a seizure- 50% have no real reason why they had a seizure. This is Ryan. His brain is perfect! No problems with development, function, or abnormalities. He just has seizures when he is sick. The neurologist feels Ryan will outgrow them by at 2. Ryan will stay on his anti-seizure med to prevent him from having a seizure when he gets sick- cold/flu season is right around the corner. He has an appt. 1/29/08 and if he is seizure free from now till then he will be taken off his med. Ryan has been such a good little boy these last few days! He is my life and I wouldn't know what to do without him! He did learn "Mine" today- which I thought you are soooo a toddler! Thank you for all your support, thoughts, prayers, well wishes!!!!!!!!!!! I appreciate them very much!

Follow up appt.

Ryan had his follow up appt. today with our Pedi. He weighed 22 lbs. when we left the hospital (had gone in at 24lbs. 10oz). Today my little piglet weighed 25lbs. 10oz. He gained 3lbs 10 oz in 6 days!!!! I knew he was eating well, but goodness. He is still a little crabby, but the Dr. explained that he is pretty much going through something similiar to post traumatic stress disorder. Tomorrow he has is appt. with the neurologist and a repeat EEG, so the Pedi. said it will probably be pretty stressful on Ryan and he will be crabby for a while yet. We don't think it is related to his seizure med at this time. He can be very happy and playful, just when he wants something he has no patience and has a huge meltdown- not like Ryan. The Dr. said he probably regressed some too.

Update

Ryan has been very whinny. Now, I know he is still recovering, but I am trying figure out what it is from. His anti-seizure med has a side effect of crabbiness which they told me to watch for. I can't decide if this is just a phase or if it could be from the med. He is sooo sensitive- even if I look at him wrong he whines. He is happy for the most part and has always been a happy kid. I am guessing it is because he is still recovering.

Home from the hospital

He is HOME!!!!Ryan was discharge today at about 12:30. He is doing great! He is sleeping on the couch and he is oh so cute. So nice to see him there! I hope to get some pictures on here real soon! Oh- get this the meds Ryan has to have if he is having a seizure cost $279.00!!!! I almost fell over when they told me. This a one time dose that I give him if he should have another seizure. He is on anti-seizure meds so hopefully we won't ever have to use it. I was going to get 3 of them (one for our house, one for grandma's and one for daycare). But the cost of one is high enough. I have work off until Sept. 4th. RJ has the rest of the week off. Ryan has his dr. appt with his regular dr. on the 28th and then the big appt. with the ped. neurologist on the 29th- he will determine if Ryan has a seizure disorder or not.

Awake at 1 am

Ryan is awake and eating- now normally I wouldn't be so happy about eating at 1 am, but anything to go home right now is fine by me. He woke up when they were doing his midnight vital signs and cried and cried. I couldn't figure out why he was so sad- well, 4 crackers and 1/2 carton of milk later and I have a much happier child.