Some fun pictures of Ryan

Here are a few pictures from our trip to ND for Great Grandma's funeral.
Ryan and his favorite friend Walker (my cousin, Ryan wouldn't let him out of his sight!)

Ryan wearing Great Grandma's clip on earings!

All the snow that was at Great Grandma's house


So sweet- asleep on the way home

Christmas 2008

Ryan had a blast opening the many, many, many toys that he received! I don't think he can say he has a favorite- he is playing with everything! We had Christmas Eve at Grandma and Grandpa Best's house with Tyson and Jennie and Mikki and Brad. We ate lots and had a good time. Christmas Day we spent with Grandma and Grandpa Beehler and family. Ryan came home with more- I don't know where it is all gonna go! We ate lots there too!

Some sad news

Ryan's great grandma Huff died this morning in her sleep. We will miss her greatly, but find peace that she is in heaven watching over us. The funeral will be on Tuesday Dec. 30th. (pictures: Great Grandma Huff with Ryan for the first time, Great Grandma Huff's 80th birthday party)

Ryan had his AFO's made today

We took Ryan to get his AFO braces made today. They make a cast of his leg, cut it off and then make the brace from the cast. Ryan did really well with it and got to pick out the design he wanted to have on the braces. He picked one with helicoptors, tractors, and trucks on it with a blue background. He will get his braces Jan 2nd.

Ryan's neurologist appt.

Ryan has been off his anti-seizure med for 4 weeks now. He had an EEG done to make sure he has no seizure activity off of the med. His EEG came back normal. We talked to the neurologist also about doing genetic testing and he too felt it was a good idea- so we will be getting it done. Ryan doesn't have to see the neurologist until Aug 2009! Which as long as things go well, will be his 2 year seizure free anniversary!

Appt with Rehab Dr.

Ryan had his follow up appt today with Rehab at Gillette. Ryan has been going to physical therapy for 3 months now. He has improved in a few areas- able to jump, ride a bike, but continues to struggle with walking. He continues to walk with his toes pointed inward and on his toes- doesn't put his heel completely down. He has been wearing braces inside his shoes, but they don't seem to be helping him. So at the appt. we talked about getting him new braces called AFO's. They go all the way up to his knees. Ryan walks with his hips instead of his thigh muscles. The braces are to help him walk on his foot instead of his toes. The problem with him walking on his toes is that his calf musclses ares starting to get tight. We will have to watch him closely with the new braces so that he is not losing more muscle and that they aren't causing more hip problems. We also talked about Ryan having genetic testing done to better determine why his is having hypotonia. Hypotonia is usually a sign or symptom of something else. The Dr. feels that even though all his tests and come back normal, Ryan could have a central nervous system problem.

Ryan visits Santa

Ryan went to see Santa and Mrs. Claus on Saturday. They had breakfast with santa, crafts to make, coloring, santa's store, and a place to make and send a wish list. Ryan told santa he wanted a tractor. He had a good time.

Ryan's special "stickers"

Ryan got special tape put on today at physical therapy. He wears it until it falls off. He is doing really well with it so far. It helps strengthen/ support his muscles. He is still in toeing alot and walking on his toes to compensate. So, we are hoping this will "wake up" those muscles.

DNA test results

Ryan's genetic test results came back today as normal- so no chromosome problems.

On cloud 9!

Ryan got to ride in the dump truck- dump dirt, ride in the backhoe- and dig dirt. He loved it!

All done with Keppra

Ryan took his last dose of his seizure med last night. It feels really different not giving him medicine 2 times a day. We have been doing this for 15 months and I am so glad we are done.

Ryan's pumpkin

Ryan and daddy had fun carving this pumpkin

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.

PT is helping!

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

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.

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.

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!

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.

Potty Training

We have started our 3 day potty training- wish us luck!

ETA: potty training didn't go so well- we will try again after things settle down a little- too many appts to go to right now!

CPK Result

Ryan's result came back normal! His level is 97 and abnormal starts at 200. I am relieved to know that his muscle weakness it not due to muscle wasting and this rules out muslcar dystophy. His Gillette appt was made today- he will be seen Sept 25th. I am happy that we were able to get in so quickly!

What a trooper!!

I am so proud of Ryan! Today Ryan had his CPK or CK blood level drawn and didn't even complain. He was so good- just sat there and watched the lady poke him and fill up the tube. He wanted to know what they were going to do with his blood. He is so smart. It will take a few days to get the results back.

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.