this has been a bit neglected, but life has been crazy. I had began working full time and it has left little time for things like the internet. however.. Joe continues to do well. since the probable seizure in Jan 2012, he developed a difficult stutter. he went thru lots of speech therapy but nothing has really helped. he attended Indian Trails Camp for the first time last summer and did very well. he will be going back for 2 more weeks this summer. he is learning his sight words and working thru some basic math concepts and is doing well with that. he enjoys using the iPad often. he will be seeing his psychiatrist next month where I’m going to address coming off the risperdal in hopes of clearing up his speech. by chance, a family member had a bad reaction to it and it greatly effected their speech so I’m curious if the same thing is happening to Joe. we’ve also gone almost entirely gluten free again and the change in behavior is a huge one. I was skeptical at first, but it’s working and I’m going to try and keep it up. it’s my hope that we can reduce the medications he’s on now that he is getting older and is more able to work with us behaviorally.
2012 update
Joe continues to be stable. Last summer he attended Therapy Camp and did well and we will be registering for this summer tomorrow. He had a bad med issue around the holidays. He gained weight so rapidly (which is good) that his meds couldn’t keep up and he was all out of sorts. He ended up doubling his dose of Trazadone, but is doing well with it. He is now also 40lbs and 44″ tall. This is amazing for him and I hope he continues to grow. He is still on the Risperdal and Klonapin as well. He may have had a seizure at the end of January so we need to talk to the neuro. I’m not willing to stop the Klonapin just yet. I will hopefully get to call the neuro tomorrow and get an appointment. Developmentally, I’d say he is doing ok. He still has lots of issues coping with things not always going his way. He is also still unsure of playing with other kids. He plays along side them fine, but together is still difficult. We’re working on is speech and sight words. I think he’s really going to enjoy reading and hopefully he catches on quickly. We’ll officially start hs with him next year, but for now, he enjoys doing activities with his brother.
new med
Joe started risperidal on the 15th. It’s been doing WONDERFUL things for him! I’m so glad we decided to do it. The manic mood swings are gone. He’s able to communicate better and it’s been wonderful. While seizure is a possible side effect, we, along with the neurologist, decided that the risk was minimal and the gain was worth it. I’ll be calling the psychiatrist today to see about backing off the trazadone since he tends to get a bit loopy at times. He also went back to orthotist and got fitted for new braces. He chose red and green ones 🙂 We should hear from them some time this week.
birthday treat!
Joe is taking his first birthday treat to school today. 2 dozen gluten free cupcakes 🙂 He couldn’t be happier.
Aside from that, Joe is doing really well. We recently discovered that CIB now contains wheat starch. It used to only carry the cross contamination label but now, the last ingredient has been changed. He’s been off it for about a week now and his behavior is MUCH better. He’s sleeping better and the manic episodes have stopped. Hopefully, things will continue to improve!
IEP
Joe’s IEP is finally complete! Lots of it is focusing on PT. There’s also OT monitoring and a list of things that the teacher can do with him to insure he is comfortable in the classroom. I like the looks of it. I hope it is as useful as it appears. Therapy Camp registration is also coming up. Joe is very excited to attend again this summer. I’m hoping this year to focus on more gross motor skills and strength building. As far as day to day things, he is doing fairly well. As long as we stay away from gluten, there haven’t been many problems. He still has a very difficult time eating and is extremely skinny. He’s recently taken a liking to cereal and rice milk so I’m letting him eat as much as he wants in hopes of putting some meat on his poor little bones. He also is still drinking his CIB. I think I need to up the cups of that as well. He’s only drinking one, maybe two a day but I think if he has two a day, it will be better. He will be 4 on the 24th. I’ll try to do a bigger update then encompassing the entire year as well as height and weight stats. I know right now, he only weighs 31lbs. I know 2 2yo’s that weigh more than he does 😦
mini update
Joe is doing fairly well. There was an “incident” with his previous teacher the Monday after break. Needless to say, he’s no longer with her and he and Isaak are now in the same class. They’re doing well and are able to function independent of each other so that’s good. Joe has his next IEP Monday so I’ll update more after that.
neuro update
Joe saw the neurologist Friday for his twice yearly appointment. as of December first, it has been 2 years since his last documented seizure. he started his trileptal the last week of November, 2008. he may have had a seizure in May 2009, but he was sleeping and by time I got to him in his crib, it was all over. so, for documentation purposes, we’re going with December 1 since that was the last time he had one during the day, in front of us. they said that we can begin to wean him from the meds but I opted not to since he is in school now and I don’t want him having a breakthrough seizure while at school. we’re going to revisit the decision in June, when he is done with school. I’m pretty nervous about it. for whatever reason, I have this feeling that the seizures are going to come back. I can’t explain it. I’m thankful for now, that he’s doing well.
his second week of school is also going well. he’s really enjoying going and his teacher says he’s doing really well in the classroom. if we can just get the whole issue with his braces worked out, then it’ll be great. as it stands right now, I have to wait til they go inside and then put his braces on him myself (with Eli strapped to my back) and it’s really difficult. I’m hopeful that with an IEP, we can get an aid to do it for him. it only takes a minute when you don’t have a 20lb toddler on your back.
School!
Today Joe started “real” school. He’s now at the same school as Isaak (in a different class) and he’s having a real good time. He’s remained pretty steady with his meds and toileting so we agreed to let him start (it was his idea). I should know more about his IEP and goals shortly. From what I saw today though, he appears to feel comfortable and really enjoying himself. Yay Joe!!
Halloween! and some other things
Joe did surprisingly well with the whole concept of trick-or-treating. He enjoyed getting dressed up and despite the hustle and bustle in our neighborhood, managed to go to several houses and get a decent stash of candy. Of course, he’s been wanting to eat the entire bag which has led to several meltdowns, but overall, ok.
A few weeks ago, we started him on Melatonin and it’s been VERY useful in helping him settle and sleep longer at night. It’s quite a relief not to have him up til 11 or 12 at night. The psychiatrist said she has lots of kids with Autism/Aspergers that use it with success and she’s glad that we found a good fit for Joe.
He has also “graduated” from PT. The therapist feels that as long as he continues wearing his braces, that he should be just fine. They do help him immensely and he enjoys wearing them so it’s definitely good.
He’s been doing ok going out in public and seems to enjoy it. He does get a bit overloaded at times and tends to need a nap when we get back, but overall, it’s good.
dumptozers
that’s right. dumptozers. aka, bulldozers and dump trucks. the latest obsession. he has several books, a pair of socks, and a coveted shirt. they’re all he talks about. I think they’ve effectively replaced Thomas. this past weekend, we went up to dad’s and Joe saw his tractor in the garage. he was SO shocked to see that my dad owned a “real dumptozer”. you can imagine his delight when dad took him for a ride, let him drive, and operate the scoop! one of the many perks to having a farm.
he’s still making excellent progress with his braces. yesterday he rode his bike with them on and they added enough height to him that his legs stayed in the pedals better. he made it all the way around the block!
the only real concern, is the EARLY waking. this morning was 530am. he was a hott mess and had a lot of trouble going back to sleep. I went and layed with him for a bit and he slept for maybe an hour. then he was up and at ’em, like nothing had ever happened. crazy boy.
for the moment, life is good.
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