GREAT NEWS!!!

Ryan is officially done with physical therapy and his neurologist, who we saw on 8/11, no longer feels that we need to continue under his care!!!! I am very happy about this! Aug. 14th will mark 2 years since Ryan's last seizure and all the things he has to indure. It will be nice not having to go to PT 2 times a week. The neurologist did tell me to watch for any problems that might come up when starts school-he said at 2nd grade if there is any learning problems or other issues to make sure we call him right away. So, we have one more appointment in Dec. with the Rehab dr. and then I am hoping this will be the end of this long road! Ryan is doing great- he still has a few things that we will continue to work on- strengthening his ankles, throwing a ball.

Yikes it has been a long time!

But I do think that it is a good thing I haven't updated for such a long time! Ryan is doing very well! We went to his Rehab appointment in June thinking he would need shorter braces and the dr. decided to only keep him in his orthotics that just go in his shoes to help with being flat foot. So, no braces up to his ankles- yeah! The Rehab dr also decided instead of every seeing him every 3 months we now can go to every 6 months! We are still doing PT, but very close to graduating! We went on a bike ride the other day and when we got back I realized that we had gone 1 1/2 miles!!! His little legs were going around and around so fast! This is amazing since a year ago, just walking was a very tiring task! We go to see the neurologist Aug. 11th and I am guessing that he will say we no longer need to come see him! It has been almost two years since Ryan's last seizure!!!! (Aug. 14th, 2007). Ryan has been enjoying the summer riding his bike and going swimming. He is 3 1/2 and is in the testing stage- he keeps his mom and dad constantly evaluating their parenting techniques! I will update again when we see the neurologist and when Ryan graduates from PT!!!!

Update

Ryan has continued to do very well with potty training! I can safely say that he is fully potty trained! We were told last Thursday that Ryan will be getting another 6 months of physical therapy. They want to continue to work on strengthening and improving his balance/coordination. I was a little sad that they decided he needs more PT, but know this is what he needs. He could possibly not need the full 6 months though. Ryan and I will be going to Michigan to meet some mommies of other Feb 2006 babies (now 3 yr olds) that I have chatted on the internet for the last 4 years! We are flying and I am very excited! We will only be going Fri- Sun, but it will be a fun trip! There will be 6-8 other moms and their kids! Ryan is loving that it is spring and can't get enough of being outside. Since he has been more active we have made 2 trips to Great steps in the last 3 weeks due to him getting blisters from his braces. So, Great steps has been doing adjustments and we hope that his feet will get better. He has been limping slightly in the last 3 days, I am guessing from his feet being sore, but we will continue to watch that. I must get to bed, work tomorrow and then off to Michigan on Friday!

It has been much too long since I updated!

Ryan has some big news! He has been in big boy underwear for 8 days and nights now!!! He does have an accident here and there, but is doing very very well! He was dry all day and night yesterday! We are very proud of him! Ryan has been going to OT since March (has gone 4 times for a hour) and has had some big improvements! He is sleeping through the night- mommy and daddy are very happy. His behaviors and sensory issues are much much better also! I am glad we decided to keep that appointment. Ryan continues with PT 2 times a week for 3o minutes each time. I am hoping that he soon will not need as much- would like to get him in a swimming class this summer. Ryan had his ECHO done aboout 3 weeks ago with normal results, so we will not be doing anymore testing on him unless something else changes. It is a little frustrating not to have a confirmed diagnosis- even though I know we will probably never will. It is hard not knowing the whys, hows, whats. I am happy that whatever happened is on the mild side and he is doing well. Ryan had a Rehab appointment a month ago, and the dr felt he may need some sort of brace/support for his ankles and legs for life, but doesn't feel that he will need as much as he has now. I am hoping at his next appt in June that he will be able to get a shorter brace that will still give him ankle support, but doesn't go all the way to his knees. Ryan is very flexible and has loose joints, so he does need some support so his ankles don't give out. Well, it is time to get him some lunch- just wanted to get an update on here!

Genetic Appointment

We had Ryan's genetic appointment today and it went very well. Ryan has improved greatly over the last few months and even weeks. A family history was done and then she did a physical exam on Ryan. She asked us "why we were there" We had been told by the neurologist and rehab doctors that we should really get genetic testing done. The geneticist said that Ryan has "out grown" his hypotonia- although feels that he probably did not have this to begin with. Ryan is flexible and the geneticist feels that Ryan actually has some mild connective tissue problem and that is what we are seeing with his walking. She told us that she feels "Ryan had a bad illness" and suffered side effects from that. The physical therapy has helped Ryan "rehab" from it and this is why we have seen such an improvement in him. I have always questioned if something happened after Ryan's 3rd seizure. So we did not do any genetic testing- lab work on Ryan. He will need an ECHO- ultrasound of his heart in the future (will be planning on Aug) to make sure his connective tissue problem has not effected his heart. If it is normal, we will not being having any more appointments. If it is even on the higher side of normal, we will go back to the geneticist to look more at his connective tissue problem. We are very happy with this appointment. Ryan is neurologically on track and a smart kid. She told us that he is a "normal" 3 year old and to start treating him that way. We have found that the doctors and us have been over analyzing everything and anything about Ryan. SO, we are moving on- the past is the past! I am thinking about cancelling his OT eval, wondering if we have noticed sensory things that really aren't a problem as much as we have paid attention too. He will soon get his 6 month eval from PT. I am thinking he will have less or no PT after that. It is a relief for us.

Happy 3rd Birthday Ryan!

How did you get to be 3 years old already!?! You continue to make us laugh daily and amaze us! You are the joy of our lives! We love you "peanut butter"!

Ryan will be having his birthday party on Sunday- he is going bowling! He requested a John Deere birthday cake, which he will be getting. I will post some pictures of the big day.

Some updates on Ryan

Ryan has been having an evaluation done by Early Childhood Intervention (Child Link). Today, we got the results back. Ryan is average to above average on his communication and cognitive skills. His fine and gross motor are below average, which we already knew. Although, he is not below average enough to qualify for free services. So, we will continue to do private physical therapy. Ryan has some troubles with adaptive behavior- he has what is called sensory defensiveness. Ryan has trouble with being overstimulated- by noise, busy, crowded areas. He also gets overstimulated by things on his skin. Ryan moves from one thing to another frequently because he gets fatigued/ and or struggles with being over stimulated. He will be getting an OT eval on March 5th to get some ideas on how to help Ryan with this. He continues to be a very fun loving, happy boy! We recently also learned that Ryan does have a diagnosis of epilepsy- which I did not know until getting his neurologists' notes. I questioned this when I saw it written. It has been frustrating to try and figure out the why's and how's, especially when the doctors don't tell us things! I asked the neurologist about this and the reason for why we didn't see problems with Ryan's tone sooner. I was told because he has had more than one seizure- that qualifies as a seizure disorder, but in the long run hopefully it won't mean anything at all. The neurologist feels Ryan could possibly have a neurological disorder that took time to progress for us to see the hypotonia. Thankfully, Ryan has responded very well to physical therapy. We have a very busy March coming up with dr appt and PT/OT. I will try to keep this updated.

18 Months Seizure FREE!

18 months ago at 17 1/2 months, Ryan had his last seizure! This is huge! We are hoping this means Ryan has out grown them and we won't see anymore. Ryan has been off his seizure med for 3 months now.

Bob the Builder Live

Ryan, Grandma Best and Mommy went to see Bob the Builder Live for an early birthday present to Ryan. He had a lot of fun and asks to go back and see it again. They were really strict about taking pictures- so I had to be sneaky and get a few quickly.

A Smart one!

We continue to work with Child link to assess where Ryan is at. Well, this is one smart little boy!!! He had his cognitive eval and blew us and the therapist away. He is doing things at a higher level than his age. We don't have the results back yet, but comments were made that he is doing things that not all kindergartners are able to do. I have to thank our daycare lady for this also- she has taught Ryan many things. Next week he has his fine and gross motor eval- which we know he will have more difficulty with.

Update on Ryan

Well, I haven't done this lately and I have heard that I need to. Ryan continues to do well in many areas. He is a happy, fun loving, energetic little boy (who is almost 3- how did that happen?). He talks non-stop, guess that is one thing he got from me! He learns new things everyday and continues to amaze us! He is eating and growing like crazy! He continues to go to physical therapy 2 times a week to work on areas that continue to be weaker. He has improved greatly from physical therapy already! Physical therapy works on his upper arm, trunk, and leg strength. He gets to do lots of fun things there and for the most part he likes going- somedays are better than others. He usually comes home tired. He is not liking his new braces right now and we are trying to improve that. He continues to be seizure free and off medication. We are working on potty training- somedays he does really well and others not so well. I don't believe his hypotonia has anything do with this, but it can cause problems in this area. I have found a hypotonia website that has given me a lot of helpful info and support. Ryan won't be having his genetic testing until March (soonest he can get in) and the results can take 4-8 weeks to get back.

Child Link Meeting

We met with Child Link today (Early Childhood Intervention) to see what other ways we can help Ryan. This service is through the school system. We met with a nurse today, who took information about Ryan's health history. She then goes back to the rest of the team members (physical, speech, behavioral, etc therapists) and they decide what Ryan needs are. He will be evaluated on his development next Tuesday and the following Tuesday will have a meeting with the nurse, developmental therapist and physical therapist to develop the best plan for Ryan.

Ryan's new braces

Ryan got his AFOs (ankle-foot orthotics) today. He so far is very excited about them.