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Saturday, September 27, 2014

Hopeful and.......not

I feel both hopeful and discouraged, all at the same time.  I finally got the final report for S back from the neuropsych and while I've been waiting on it and knowing he needs a more formal diagnosis in order to get him the therapies and services he needs, it still makes me sad to get the list.  Especially since the list is much longer than I had anticipated :\  We've had the ADHD and SPD diagnosis and an acknowledgement that he has anxiety--I kind of expected maybe one more diagnosis, formalizing the anxiety or maybe even OCD but man, there are like ten of them.  And a recommendation to re-evaluate after a year of therapy because they could not rule out OCD but couldn't definitively say he has it, either.  *sigh*  Ah, well, forward we go.

Friday, September 19, 2014

Well, looks like we have another.....

The neurologist called me personally a few minutes ago--B's EEG is abnormal, just like Izzy's :\  Her abnormal activity is on the right side, temporal and central.  B's are on the left, back part of the brain. Even though its a different area, its still a part of the brain that the abnormal activity can trigger seizures and with some of his symptoms, Dr W is pretty confident we are seeing focal seizures and is going to start him on Trileptal as well.  S has a podiatry appointment in the morning in another building so we will just walk over and get B's script as well.

Its an odd place to be.  On the one hand, you always hope the doctors find nothing, that everything is fine and there are no health issues.  But on the other hand, there is a sense of relief that these things that don't seem normal have a reason and a treatment. 

Another EEG and stuff

My Busy Little B had his routine EEG the other day--he did really well!  He was very cooperative and managed to not freak out about having the leads set up.  He needed lots of reminders to stay still and  not try to touch the wires but he tried really hard to do what the tech asked of him.  She got everything she needed and he got to watch Bob the Builder :p

Dr. W, the neurologist, said if the results are normal, we will get him set up to do the 24-hour EEG the way Isabelle did, just to make sure he's not showing any seizure or abnormal activity because the routine one is only 20 minutes and can miss things.  With a family history of seizures and Iz having them, he wants to be sure.  They said we should have results in a few days so maybe Friday or early next week.

MRI is set up for next month--that one makes me nervous.  It will be sedated because of his age and anything with sedation gets my nerves going full swing.  But I am also nervous about results--we went into Izzy's MRI expecting maybe a structural issue causing the seizure activity but a good chance everything would be just fine and came out with numerous issues, including cysts that could require neurosurgery some day.  Nerves.  For the next month.  Fun times.

In happier news, B really likes his new therapist and has been cooperative with her in getting to know her and talking about behavior.  He has been doing really well in school.  The bus has been a bit of a struggle--he is supposed to be harnessed but they don't have one for him and then complained he won't stay in his seat.  Um, yeah, that's why his IEP discusses the need to be harnessed :p  They said they will get one to use for him so that should help.

He had his very first homework assignment tonight--he had to trace the letters in his name three times :)  He kept telling me "my arm is so tired.  it can't write anymore."  I told him then he'd better get to bed right away and fall asleep early so I could wake him up early tomorrow morning after his arm had a chance to rest so he could finish tracing.  He decided his arm wasn't tired after all and finished his homework ;)

Wednesday, September 10, 2014

Another visit to the neurologist....

But today it was my Busy Little B's turn.  When his pediatrician referred him to neurology, I asked that he be scheduled with Izzy's neurologist.  We had to wait a little longer to get his initial appointment but I had a couple of reasons for wanting to get the same doctor:  1) I really like him.  He's so good with Izzy, even when she's hiding under a table from him.  He's gentle and kind and patient.  He takes his time, he answers any and all questions, and he never makes me feel like I'm over sharing.  I have no idea what could or could not be significant to him so I mention all the random things I think maybe he might need to know.  And sometimes he does need to know and other times its just random stuff that doesn't fall into neurological symptoms.  But he never gives me that attitude you get from some medical professionals because you "wasted" their time going over something irrelevant.  He will take the time to explain what he knows and how it does or does not connect to his specialty. 2) I think being familiar with family history is important, especially if this stuff is genetic as everyone expects.  Dr W is familiar with Izzy and her testing and treatment and because B has some of the same symptoms and Dr W already knows Izzy's history, I figure we might get to shortcut some of this stuff :p  And I was right--with Iz, we did a wait and see while she did some therapy before we moved forward with testing.  With B, we are going straight to testing to see if he is also having some seizure or unusual activity in his brain.  He's been referred for the short EEG (and we will followup with an overnight one if the short one is clear or if he has unusual activity that isn't clear-cut seizures) as well as an MRI (to check for structural issues since Izzy has several).

The neuropsych also referred B to a neurologist for medical management of his mental health diagnosis, particularly the ADHD so the timing of the pedi already referring him was kind of perfect :p  We already had an appointment coming up and I could just hand him the neuropsych report and just like that, B is his regular patient and eventually his followup visits will be synced with Izzy's so we only have to come up once for both of them :p  they can't sync just yet, though, since he needs to see Bryce sooner than Iz due to his upcoming testing.

Monday, September 8, 2014

Monday again

Monday again--how did that happen?  It seems as though time is creeping by and yet disappearing all at the same time.  We have a busy week coming up!  B sees Izzy's neurologist tomorrow.  Tomorrow is also Izzy's third birthday so she has been busy picking out what she wants to eat and what kind of cake and waiting for us to shower her with presents :p  Later this week the boys also have therapy. And then I am hoping to hit up the farmer's market this weekend and let the boys do some choosing and cooking with me :)  So not a very busy week as we've had plenty busier but busy enough, eh?

Saturday, September 6, 2014

A visitor and more :)

  • B came home from school very happy today--Miss K, his preschool teacher, came to his school to visit him today :)  B likes his new teacher and classmates but he does miss his old teacher!  He was with her for two years and she knew him almost as well as I do. They drew a picture together of the two of them and I'm thinking of framing it and hanging in his room because he was so proud of it and so so happy he got to spend time with her. 
  • I think two of my kids are going to grow soon.  Iz and B are eating more than I am and are constantly looking for snacks.  Yesterday, Iz ate breakfast four times.  Tonight, B polished off three pieces of chicken plus sides and dessert and then asked for more food.  I may need to buy them longer pants soon :p
  • Izzy has really been into imaginative play lately.  She gathers up random toys and turns them into whatever scenario she wants to act out.  I've "eaten" soup made of toys, drank tea from Mega Block cups, driven a car with a hat steering wheel, and worn a curled up scarf as a crown. Its fun to see what she comes up with 
  • We've been reading the Little House books at bedtime.  B seems to connect more with Mary because every night when I ask him what story he wants, he asks for the Mary story :0)  S prefers Laura--she's spunky.  We've read Little House in the Big Woods, Little House on the Prairie, and we are currently part way through On the Banks of Plum Creek.  Iz and B just like hearing the stories and looking at the illustrations but the books have sparked so many great conversations with S about history and society and tolerance and more.  

Friday, September 5, 2014

A little bit of this, a little bit of that

The randomness of my mind, in bullet-point form!

  • School got off to a rather harried beginning.  B's bus is supposed to come at the same time I have to be driving S to his school.  So I enlisted the help of my Dad who puts B on the morning bus for me.  I get B ready to go, take his first day of school pictures, and leave him waiting on the corner with my Dad while I take S to school.  S's school does not have bus service so all kids are dropped off.  Doors open ten minutes before class starts and let me tell you, that isn't enough time to get all the cars through the drop-off line so there are always kids getting dropped off after school has begun because we've been sitting in the line for ten minutes.  First day of school is even more insane because so many want to park in a very very very tiny lot and take the kids inside to do pictures and stuff.  I take the pictures at home and I drop my kid off at the door just as we do every other "normal" day because it is INSANITY.  People were parking in the drop off lane so it was really hard to get through.  Took about twenty minutes to get in and out of the lot. I go back home and B and my Dad are STILL at the corner.  *sigh*  Apparently they added B to the bus route too late and the driver didn't know to come get him so I drove him to school and was assured that all would go smoothly after school and the bus would be here at four.  Nope.  They put him on the wrong bus.  The driver didn't know what to do with him, didn't even have an address for him, and she didn't even have any stops in our neighborhood.  When his bus didn't show up by 4:10, I called transportation and by the time they figured out where he was and had the bus drive over to our house, it was 4:45.  You know, if that had happened to S, I wouldn't have thought too much of it because kids get on the wrong bus sometimes. But B is a special needs student in a special needs classroom riding a special needs bus.  He always has an adult with him--they take him off the bus and escort him to the classroom and then he's to be escorted from classroom to bus.  While his speech has improved, he is still limited in his communication abilities and the bus driver couldn't understand much beyond his name and asking the aide to sit with him.  This is most definitely a mistake that should never have happened :|  He is not supposed to be on a regular bus and gosh, it sure does scare me to think he could have gotten off at a regular bus stop as part of the crowd :(  The head of the special needs transportation section got involved and it has gone smoothly the rest of the week.
  • S's personal goal for the last year or so has been to read a Magic Treehouse book himself.  He is finally at he point where his skills are high enough that he has begun reading one of the shorter ones to me for his nightly reading time.  He is so proud of himself and I'm so proud of him!  He has worked really hard to get better and it shows.  He is hoping maybe he can catch up to his classmates this year and be on grade level by the time school is out (he is behind several years and gets extra help at school one-on-one.  Part of his neuropsych testing shows two learning disabilities in reading and math).
  • Izzy had her rescheduled neurology appointment (they had called me the day of her appointment last month because her doctor had a medical emergency--turns out it was for the birth of his daughter :)  And excellent reason to reschedule your patients!).  When she started the trileptal, the improvements were swift--she was more coordinated, her speech was better, her falling episodes were much further apart and sometimes not as severe.  She was still having some seizure activity but not even close to what it was before.  But the last month or so, she's been having some odd things happen that I wasn't sure was even connected to neurology but I told him about it anyway, just in case.  The major thing is that most of the time she speaks fairly clearly and then sometimes she sounds like she is speaking another language.  Repeating herself or asking her to slow down doesn't seem to help.  Other times, she will get "stuck" and repeat the same syllable (or two) over and over.  Neuro says that sometimes when you start seizure meds and you get the main seizures to stop or at least be less severe, you might find minor seizure activity spreading to nearby areas of the brain.  The unusual activity in Izzy's brain is very close to her speech centers and he believes that the episodes of incomprehensibility and getting "stuck" are minor seizures, especially since she is still having random absence/focal seizures.  So we upped her meds and will see if this new dose is high enough to bring them to a stop.  We are going to slowly up her dose until we hit a level where she is seizure free. 
  • Izzy has fallen in love with Garfield--if I would let her, she would just watch Garfield cartoons all day long :p  I should track down some Garfield stuff for her upcoming birthday (four more days!!)
  • We went to the zoo last weekend and now Izzy is convinced every time we leave the house that I am taking her to see the "namimals"

Monday, September 1, 2014

School is almost back

I think all of us are feeling a little anxiety about school starting back up.  S is suffering from is "normal" anxiety but I think once he gets back and is reminded that now he gets to talk to his friends, he'll be feeling good about his return.  I had talked with his new teacher on the phone and met her in person at the Open House last week and she seems not only nice but also committed to helping S be successful.  She had consulted with his third grade teacher to find out some of the strategies that helped him last year and she had already set them up :)  This teacher was handpicked by last year's teacher and the rest of his IEP team so I am thinking we will have a good year.  He's not convinced, though!

B is very excited but I am a bundle of nerves.  Change is always hard for him and while I am hoping things go well, I am expecting some rough days (or weeks. maybe months). He and I went to his Open House together and he liked the teacher and aide and classroom but there were no other kids present when we were there and sometimes that really changes things for him.  Fingers crossed that the other students in his class are ones he will immediately declare his friends and want to hang out with every day :p

Izzy is so excited about the upcoming school year and she will NOT believe me that she isn't going to school.  She's still on the wait list and the Early Intervention playgroup she might be attending won't start for at least another month.  We need a salary raise so we can get a membership to the Y again so she can take a class or something :p I need to check out the local library and see if they have any programs running for her age group!