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.

A beter day

Ryan continues to not want to eat or drink, but he is doing much better in other areas. He was feeding me his muffin this morning and getting his eggs on a spoon by himself. He stood up by himself and he is crawling. He has taken some steps, but with lots of help. His IV came out at 6 am and the dr. is going to let us leave it out until this evening in hopes he will start drinking. He isn't shakey anymore- huge relief! He hasn't talked yet, but is making noises. He doesn't like his room, his ID band or the nurses. I am feeling so much better than yesterday! So, now I ask that you guys help me cheer Ryan on- "lets drink, let's eat, so we can go home!"

A hard day (for mommy)

I am having a hard day today. I was hoping when Ryan woke up this morning he would be less shakey- no such luck. I just want my baby back! I know it has only been 48 hours since he has been off the meds and had his breathing tube out, but this is going much too slow for me! Ryan isn't talking- makes a few noises here and there. He can't roll over, stand, sit up very long, and he has a very difficult time controlling his tongue. I keep feeling like I am going to take a completely different child home. They tell me he will get better and will be back to where he was developementaly before all of this- but it is very hard to believe. I try to stay strong for Ryan- because I know he needs that. I go home everyday to take a shower, feed the cats, and check on the house. Just to get out of the hospital for awhile. Maybe once PT/OT comes I will feel better.