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Saturday, November 22, 2014

B goes to the neurologist

We had our neurology appointment this week--I was very nervous!  But we got excellent news--B's MRI was normal :)  None of the problems Iz has so that is a relief.  Dr. W did raise B's seizure meds a bit more (and told me the next dose up if I'm still seeing seizure activity after two weeks) so hopefully the new dose suppresses the seizures and we don't see any more episodes.  Iz has only had maybe one or two episodes since her meds were raised a few months back so I would love the same results for B.

We also talked about the ADHD and meds.  With S, we didn't even consider meds until we'd tried other avenues but B can get much more severe than S ever did and B's other issues can get triggered by the hyperactivity and impulsivity and in preschool it was not unusual for them to need to clear the room of other students until B got control of himself again.  B has already started weekly therapy and the seizure meds may help with the more severe behavior issues (sometimes seizures can cause them) so we are going to wait until closer to the end of the school year to give us time to find the right seizure med dosage and then talk ADHD meds.  If the weekly therapy and seizure meds bring him down to a more "normal" level, we might be able to postpone the meds but if he is still really struggling, we will go ahead and start.  He's already pretty far behind developmentally/emotionally/socially/educationally so if he's still at an abnormally high level even for a kid with ADHD, meds it will be.  One thing I like about Dr W is that he is just as cautious as our pediatrician when it comes to medication--he wants to make sure that the right med is being given for the right reason.  So if its the seizures causing B's brain to go haywire, he doesn't want to pile on unnecessary ADHD meds when all we really needed was the right seizure med (not that B doesn't have ADHD--I'm pretty sure anyone who spends any amount of time with him can see that he definitely does :p  But if you take away the seizures and the ADHD stands by itself, it may not be bad enough to need meds so young, if that makes sense.)

Sunday, November 16, 2014

Six month followup

Two years ago (and a few days), my Busy Little B had his ear tubes placed.  He had lots of ear infections and could not pass a hearing test and the ENT found he pretty much always had fluid trapped in his ears.  The tubes went in and he finally passed a hearing test!  His speech grew by leaps and bounds (although he is still behind).  We were told to expect the tubes to stay in for six months to a year but you know my kids--they are rule breakers ;)

B sees the ENT every six months and at our last visit, one tube was nearly out.  This time around, that tube is completely gone and there is no sign of fluid trapped in there.  The other tube is still in place and open but looks like it is working its way out.  Our ENT thinks maybe in six months it might be out and we can evaluate whether the fluid is staying out or if B needs a new set.

In a few days, B has his next neurology appointment and we find out the results of his MRI.  After Izzy's MRI results, I must admit I am nervous to see what's going on in B's brain.

Friday, November 7, 2014

No news is good news, right?

Things have been fairly calm here lately.  We are just holding steady--taking meds, doing therapies, working through homework, watching the seasons change.  Things are still kind of busy and hectic and sometimes a little crazy but I like these stretches where nothing new pops up!  No diagnoses, no real problems, just......moving forward.

Wednesday, October 1, 2014

I won't let sadness steal you from my arms

A couple of years ago, I wrote about this song and how it helped get me through those rough moments before, during, and after Izzy's OHS


I find that lines of the song still loop through my head as needed, often for different reasons, but comforting nonetheless.  Recently, one line has been popping into my mind in particular--I won't let sadness steal you from my arms.

Not too long ago, Andi over at Bringing the Sunshine wrote about comparison being the thief stealing your joy (http://www.bringingthesunshine.com/2014/09/comparison-thief-joy/).  To be honest, comparison isn't often a problem for me.  I'm not really one to feel regret over things--they are what they are and the only thing we can do is move forward.  When I look at comparisons, it is more a clinical study--my child is or isn't doing XX that all the other kids are doing so I need to tell this doctor or that specialist to see if it is significant to their treatment plan.  But every so often, that urge to compare in a woe-is-me way creeps in.

My Busy Little B has been having a rough go of it the last few days and it has made riding the bus not an option so I have been driving him to school.  We go and park and I walk him to his classroom through a sea of tiny little kindergartners.  Their busses pull up to the front door and let them off.  They all stream up the sidewalk and through the doors and find their lockers.  They put away their coats and backpacks and chatter with their friends and make their way to their classrooms.  They are so tiny and cute and independent.  And gosh, did that make me sad for a bit.  My little B can't do those things.  He has to be escorted from bus (or car) to his locker, he struggles to get his stuff off and hung up, he needs an adult right there to keep him on task, he doesn't like interacting with other kids beyond saying "hi" so there are no cute little conversations with friends.

But as I made my way back through the sea of tiny people, I could hear the music and line in my head--I won't let sadness steal you from my arms--a reminder, just when I needed it, that if I focus on all of the things he isn't doing right now, I'll miss out on all of the things he does do.  The way he sings off key with me at bedtime when we do our good-night song, giggling while he does his chores, shouting "watch this, mama!" as he spins in circles on the beach, snuggling up against me when he gets home from school because "I missed you soooooo much", proudly showing off his Lego creations.  Letting the coulda, woulda, shouldas take over means you miss out on what is.  And what is may be difficult at times but it also is filled with a whole lot of wonder and joy and love. 

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!

Saturday, August 23, 2014

Brain Dump

  • Izzy's neurology appointment was postponed due to a medical emergency for the doctor.  I hope whatever the emergency was, all is well.  So we go back in two weeks to see how she's doing.  I had planned on seeing neurology before she ran out of meds so I hadn't refilled it in case he wants to change what she's on but she is running out so S and I ran over to the children's hospital pharmacy today while we were up there for his podiatry appointment and got her new bottle. 
  • S was referred to podiatry a while back because I was concerned about how his feet roll inwards--he wears out one side of his shoes completely while the other side looks barely used.  It took a long time to get an appointment but we got one about six weeks ago and the podiatrist wants S to wear custom inserts.  We went in today to get them and when the tech pulled them out of the package, they were so small :p  Somewhere along the way the shoe size was mixed up.  So they took a new set of casts and are sending the too-small inserts back and getting the correct size made.  We go back in a month to get the (hopefully) correct pair. 
  • Izzy is still on the wait list for preschool.  We've been planning on her doing the weekly playgroup if she doesn't get in to continue getting support and working on social skills but we met with her EI worker earlier this week and they keep changing the program around and changing the criteria to qualify for group.  She is pretty sure Iz will still be able to get in but we won't know for sure until next month or maybe the month after.  Oy.
  • We moved!  We are technically farther away from the hospital but its a straight shot up the highway so its actually quicker than before.  Plus I don't have to drive an extra almost two hours every appointment running kids in the wrong direction for babysitting.  Logistically, this will make things much easier for me :p  And with three kids needing shuttling to specialists and therapies nearly an hour away, two school aged kids with homework, my own homework, and all the other things that go with just normal life, anything that makes things easier is a very good thing ;)
  • My cat has become even more protective of the kids lately.  He has taken to sleeping outside the boys' bedroom door and guarding it.
  • I hate humidity.  Please go away
  • Have a fantastic weekend, everyone!

Sunday, August 17, 2014

Yearly cardio visit!

Izzy had her yearly cardio visit last week. There were some very heavy rains the night before so there was a lot of flooding and getting to the hospital was a bit of an adventure!  When we finally got there, parts of the hospital, including the parking garage, had been flooded and were being cleaned up and dried out.  We were sent up the road a bit to park and then shuttled to and from the hospital--I'm pretty sure the shuttling was Izzy's favorite part :)

Izzy went silent during the appointment and spent most of the time either staring at the floor or hiding her eyes. However, she was mostly cooperative and did respond with head shakes and nods and didn't hide under any chairs or tables ;-)  She didn't completely shut down so it's an improvement!

Her echo looks great so we have clearance for another year.

Friday, July 25, 2014

B has a heart murmur

Today was B's first cardiologist visit.  He's been having some minor symptoms that could be linked to CHD (and that could also be many other things) and combining that with our family history (two siblings with CHD and a great uncle that died a week after birth), he got a referral to be checked out at the cardiology clinic that diagnosed S.

He did fantastic :)  He was very cooperative and followed directions really well.  His EKG was normal but the cardio wanted an echo as well because Iz and S both had CHD.  It turns out that B has a heart murmur--first I've heard about it!  But his echo went beautifully and they got many really clear pictures that show no defects :)  Our tech was very thorough and it took a long time but they wanted to be really sure he was okay!  So his murmur is being classified as an innocent murmur and he does not need follow-up care and it shouldn't effect him at all.

I was hoping for everything being normal but I'll take an innocent murmur over a more serious diagnosis :)

Wednesday, July 23, 2014

What do you say when you see someone?

Lately in therapy Izzy has been working on ordinary things that make her anxious and therefore shut down.  Today, we were talking about what you do when you see someone (say hi!) or are leaving (bye bye!).  Typically when we see someone, she shuts down and looks down at the floor and won't interact with them, even when it is someone she knows well.  So we practiced waving and saying hi or bye.  And then her therapist took her for a walk through the office and they practiced saying hi to people and then bye on the way back to the room :)  When we left to go home, she even spoke to people in the elevator, which is a really big deal for her.  It was a good session!

She talks!

Izzy had Early Intervention today.  We were meeting in her old playgroup classroom, the informal one she went to before she was old enough to be a part of the structured "official" group.  I think Miss J and I were both expecting her to be very hesitant since she probably doesn't remember the room and new things make her so anxious but she did really well.  She spent some time hiding behind me and pretending Miss J wasn't there but eventually some of the toys caught her interest and she even went through several period of talking to Miss J!  We still had plenty of silence where she verbally shut down but even then she was still engaging Miss J, showing her things, making eye contact, gesturing for her to play, too.  Eye contact and engaging and talking?  That makes for a fantastic visit :D

Sunday, July 20, 2014

I'm a spider!

Last night before bed, we took a family walk :)  Izzy loves to go for walks and whenever we visit my parents, she bugs my mom to take her on walks around the neighborhood.  We typically go for walks at local parks that have walking trails but last night, we opted for around our neighborhood.  We don't do this often because there are no sidewalks but it seemed to be a quiet night and we tried to stick to the lesser traveled side roads.

We meandered our way to a small park and despite it being a rather sad old park, the kids were very excited to stop and play because it was "new".  They can have fun just about anywhere, as long as they can say they were at a park :)

S decided to go head first up and over this and he got stuck LOL  He wanted me to take and picture and then get him down :p
B also loved it and spent most of his time climbing up and then lowering himself down through the bars so he could swing :)

S also declared himself a spider and this was his web:
And they never go in the same direction!

Saturday, July 19, 2014

Would you like to Facetime?

Today was Izzy's therapy day. She has been looking forward to it and talking about it for days--she really does like her therapist.  But, man, the moment we go through the doors to the building, she just shuts down.  She loosened up a little in the waiting room and even talked to me a bit about what she thought we were going to do but as soon as Miss S appeared, she was full-on throwing a fit about NOT GOING IN.  *sigh*  She loves therapy but she gets so anxious :\

We tried something new today and Miss S used Facetime.  Izzy thought this was the funniest and silliest thing ever because we were sitting across the table and using Facetime :p  But she did loosen up and by the third Facetime call, she was actually talking on it, which is kind of big for her.  Now, she typically will talk on the regular phone just fine but once we use Facetime, she takes a while to warm up which I think is probably really hard on her Dad.  He lives in North Dakota for work and without internet where he lives, he has to find time to go to the local coffee shop before they close (middle of nowhere means they close early, often before he's done with work).  It doesn't happen as often as he'd like and when he does call, she takes so long to warm up he doesn't get to talk to her too much :(  And the boys have the attention spans of gnats so when he calls/Facetimes, they blurt out everything in a few seconds and then get distracted and wander off......

Miss S is hoping to get her more comfortable with Facetime so her anxiety won't keep her from talking to her Dad!  She does like talking to him on the phone, though, so at least they have that.  He'd like to see her as they talk, though, and I'm betting she does, too, since she talks up a storm about Facetiming after we hang up.  Poor kid is sometimes crippled by that anxiety :\

Wednesday, July 16, 2014

More referrals!!

My busy little B had his yearly checkup today and he was having a good day :)  He was cooperative and talkative and his pediatrician was so pleased with the progress he's made from when she first met him.  Those two years of special ed preschool have done wonders for him.  There is still plenty to work on, though, but she is also feeling hopeful about things because Dr. B (neuropsych) has made more progress on diagnosing him so he can get therapy in the last few months than I've been able to do in the last three years.  You get the right team and you finally start getting somewhere!

One thing we talked about is his excessive sweating.  You look at him wrong and he sweats.  His teacher often has to change his clothes at school because he is soaked.  Everyone else will be fine and he will be bright red and dripping.  When he was younger, it was bad but not quite this bad.  It has a fancy name, hyperhydrosis, and our first step if seeing if it is just "normal" for him or has a medical reason is to send him over to cardiology.  I wanted him evaluated by cardiology anyway, just in case, so two birds and all that, right?

I also brought up sending him over to neurology and she said she was going to ask us to go so she and I are on the same page there :)  B used to have the same symptoms as Iz that led to her epilepsy diagnosis and while it doesn't happen as often to him, I still see some of those things.  And Dr. M (pediatrician) said sometimes the extreme meltdowns and sudden end of them are actually seizure behavior.  So we'll have him checked over and see what happens.

Progress :)

Monday, July 14, 2014

Water parks are fun! Until you freeze.....

Last week was S's birthday and one of his presents was an afternoon fun with his aunt.  They went to a waterpark and had dinner together and she and I thought they would spend hours at the waterpark.  It was a very hot and muggy day so the cool water would feel great.  He tends to get very cold in water so the hot weather would keep him warmed up so he could have fun.

Nope.  They were there for a very short time.  While everyone else was sweating, my poor boy started to turn blue from cold.  I  used to think his inability to handle very hot and cold was because he's such a skinny little thing but Izzy is a solid little girl now and she also can't handle extremes.  Makes me wonder if the (now closed) CHD cardio discovered a few months back is actually the culprit.  He still had fun, though, and went on his favorite tube slide multiple times and has been talking about it nonstop :)  He is hoping she'll give him a trip to the waterpark next year, too! 

Friday, July 11, 2014

Facebook?

I guess we'll try our hand at this Facebook thing, too?

https://www.facebook.com/piperandthekids

Another cute kid post.....

Well, since S got a picture post and B got a picture post, I figured I'd better give Iz one, too ;)








Thursday, July 10, 2014

The Super B!









There's no real point to this post other than LOOK AT HOW CUTE MY KID IS!!!!

Wednesday, July 9, 2014

Happy Birthday!

I'm about half an hour late with this :)  It is technically July 9th, not the 8th but we had a bit of a late night!

Nine years ago, on July 8th at 9:28pm, my first little man made his appearance:
He has been growing up too fast ever since:

Friday, June 27, 2014

A little good news :)

Izzy had her last speech session!  She has met all of her goals and is considered "age appropriate" :p  Her speech therapist would still work with her on a few things, particularly clarity when speaking in longer sentences, if insurance would continue to cover it but her eval scores are too good to get another session approved.  But that's okay--for now, her speech is so much better than it was and hopefully these months of early intervention will keep her speech development from going down the same path as her brothers (both of whom are still in speech through the school).  I guess that is one bonus of being the youngest of three--when her speech development was identical to her older brothers, I did not have to fight to get her evaluated and helped because the history was already there. 

She was also approved for preschool next year but there are not enough open spots so she's on the waitlist.  Her Early Intervention team has been putting the pressure on the preschool to get her in because of her social skills (which are pretty much zero.  She rarely will interact with the other kids, even though she looks forward to seeing them and talks about them all week) and the fact that her speech is nonexistent when she is with a group so they are hoping she lands a spot.  If she doesn't, there's a playgroup for older kids (3-4yos) so at the very least we will do that. 

Monday, June 16, 2014

Hello, my name is impatient

We met with the neuropsych a week ago to go over B's evaluations.  They needed a few followup tests so the first half of our meeting was waiting while his psychologist did her evals and scored them.  Then we went over some of the scores (he is average in the intelligence tests and average in speech except in outgoing--he can understand what you are saying just fine but he cannot express what he wants to say).  The head of the office came in to look over the results and ask follow-up questions.  We talked about some of the various diagnosis and treatment plans but he wanted time to go over the new evals thoroughly before writing the final report/diagnosis.  I was kinda hoping I'd have it by now *sigh*

Waiting, waiting, waiting.......

Wednesday, June 4, 2014

Busy busy busy!

Things have been busy around here--lots and lots of driving for therapies and appointments!  But its a good busy because things have been holding pretty steady and we are just in the rhythm of getting to where we need to be :)

Izzy's speech therapy has been going so well since she started the seizure meds!  She has met several of her goals and we may be finished for now in another month or so :)

Early Intervention has been evaluating her to see what her transition out of EI will be like since she turns three in the fall just as the programs are starting back up.  They are thinking she does not need the full-on special education preschool the way B did but they also are not sure how she would do in a completely mainstream classroom by herself.  But they would really like to see her moving on to some sort of program to continue working on speech and emotional/social development.  Perhaps a regular classroom with an aide?  They are checking to see what's available and hopefully we will have a plan in the next few weeks!

B had his transitional IEP meeting so I could meet the staff at his new school.  He's going into a special education classroom with a goal of hopefully being able to attend specials with the mainstream students and then over the next few years build up his time mainstream until he is there most of the time.  We are anticipating a rough transition, though, as he doesn't do terribly well in new and unfamiliar places so it may be a while before they attempt mainstream specials.  Maybe he'll surprise us and be just fine switching schools!

Both B and S have had evaluations with the new neuropsych so now its just time to wait for results and to get a plan in place to move forward :)

And that's about it :p

Tuesday, May 27, 2014

A few extra minutes

Today, we had a little bit of time between dropping S off at school and an appointment.  Most of the time, we just wait in the car if we don't have very long because it can take so long to get the Littles out of their carseats and then back in again :p  It was a beautiful morning, though, so we braved it and got a little walk down to the pier and back :)

They love these floating piers :)  Some of them are very "bouncy" but, alas, this one was not.  The walkway out was bouncy but the pier itself was anchored pretty well.  Another park we frequent has a pier that is really bouncy so we need to make our way out there soon!


I believe this was Izzy's first time to walk on one of the piers.  Last year, she was usually in her stroller when we went by one and our normal parks hadn't had theirs out yet when we've been there. When she's excited, she dances :D



He was excited when he realized he could see across the lake to the other side.  Most of the time, we park over there and walk one of the other trails but I specifically went for the piers today because its a short walk and they haven't been out on any piers this year :)


We made it back to our car, got buckled in, and drove to our appointment with just minutes to spare :)  Perfect timing!

After we got B on the bus, Izzy decided it was rest time:

Tuesday, May 20, 2014

Oh, the changes a week can bring :)

It has been one week since our neurology appointment where the doc put her on meds for epilepsy. At the time, he said he couldn't say it was seizures 100% because her EEG didn't catch an episode. But based on the abnormal activity caught on the EEG and her symptoms, he was pretty sure she was seizing. He said if we start the meds and her symptoms begin to disappear, we'll know for sure it was seizures. The difference in Izzy is amazing. She no longer randomly falls--when she does fall, its because she tripped and those little hands come out to catch herself and she no longer injures her face/head. She doesn't have "blank" moments. She doesn't walk into walls or door frames or furniture. She sleeps better. She talks more and more clearly. Her comprehension levels have gone up. Her mood has improved--overall she is happier, more coordinated, and more vocal.

Thursday, May 15, 2014

More diagnoses......

Izzy had another neurology appointment the other day and we were there a very long time :\  There were many things to talk about.

We got the full results of the MRI.  It showed two cysts in her brain.  The Rathke's Cleft Cyst near the pituitary gland I was told about over the phone and another cyst on her pineal gland.  The pineal cyst needs to be watched because if it grows, they will need to remove it since it would prevent fluid from draining out of the brain if it grows.  It can also affect sleep so that may possibly be while she isn't the best sleeper.  She rarely sleeps through the night. 

Her neurologist was able to pull up the results of her endocrine panel and everything looks good so the Rathke's is not affecting her pituitary gland function.  yay!  We also talked about the myelin sheaths--they are not as developed as they should be but it is possible that, given time, they will catch up.  In one year we need to repeat the MRI to check the cysts and the myelination.  At that time, they will also need to get a contrast MRI of her pituitary gland. 

The MRI also showed a structural abnormality.  I forget what it is called but the part of the brain that connects the two hemispheres is too short.  Dr. W said that this is often seen in patients with genetic conditions so he's hoping genetics will find something because a diagnosis will guide him in how to continue treating her.

Her 24 hour EEG isn't completely processed but he was able to look through parts of it and get a treatment plan going.  One of the reasons we did the original short EEG and MRI was Izzy's falling.  She has your normal toddler falls where she trips over things but she also will fall for no apparent reason.  Sometimes she will be walking and just fall over or she will be standing or sitting still and fall.  When this happens, she also does not put her hands out to stop the fall so she hits her head and face a lot.  She also randomly walks into things (walls, doorframes, furniture).  While her eyesight is borderline for needing glasses for her age, she can see well enough to not walk into walls, you know?  And sometimes its like she "pauses" after a fall or walking into something--she will just be still and staring for ten to thirty seconds before reacting. Her EEG shows that a small portion of her brain misfires. A lot.  More than your "average" person with epilepsy.  While we did not catch one of her episodes on the EEG, her unusual brain activity coupled with the falling, the pausing, not putting her hands out for those falls, etc tells him that she is having focal seizures.  The abnormal brain activity she is having in that part of her brain is known for causing seizures so he believes that the falls where she does not try to catch herself and "pauses" are a seizure.  And he thinks when she walks into something she should be able to see, she is seizing--he said in some focal seizures, just one part of the brain shuts down so while she continues walking, the part of the brain that would stop her from walking into a wall has stopped.  So she walks into the wall and doesn't react to that until her brain "wakes up".  So we started a low dose of an anti-seizure med used for epilepsy.  We will up the dose after a week and then give it some time to see if it works or if we need to up the dose again.  She will be on it for two years and then they will check to see if we can wean her off or if she needs to stay on it. 

Poor kid just can't catch a break :( 

Friday, May 9, 2014

So far, so good

She's handled her 24 hour EEG fairly well so far :). We've watched Frozen and played IPad games!


Saturday, May 3, 2014

Too chilly for fun!

Yesterday I took S on a field trip at school--we went to our local fairgrounds for Agriculture Day.  It was pretty cool for third graders--they saw demonstrations on tractors, planting, various animals, etc.  However, it was mostly outdoors and it was cloudy and fifty degrees with wind.  Wind chill put us at about forty-five degrees.  Not too bad for your average kid but S has never done well with cold unless he is extremely bundled up.  After an hour he was asking to go home and by hour two I was getting ready to take him to the bathroom so he could stand under the hand dryer :\  Before we went to do that, though, his teacher came up and asked if I wanted to take him home early because she could see his lips were turning blue.  So we went to Tim Hortons for hot chocolate and blasted the heat in the van for about half an hour until he was warm enough to feel comfortable :p

S and Iz are my kids that struggle with the cold.  I wonder if its related to their CHDs?  S's is closed and Iz's big ones are repaired or closed on their own but I still wonder if the struggle with the cold is connected. 

Sunday, April 27, 2014

Time to return to regular life.....

Spring break is over, tomorrow sees the return of alarm clocks and school runs.  Not that my kids know what sleeping in is :p  But at least I could stay in my pajamas and lay on the sofa when they got up so early, right?  You watch, though--I'll have to drag them out of bed tomorrow, even though the alarm goes off later than they have been getting up all week.

Friday, April 25, 2014

The Dynamic Duo!

Meet Batman and Batman!
Izzy kept running through the house shouting "Batman to the rescue!!"  B kept picking her up and saying "you goo!  you goo! you big batman now!"  Hahahaha!

Thursday, April 24, 2014

A trip to the pediatrician

When I spoke to neurology about the MRI results, they told me they were sending the report to the pediatrician and to follow-up with her as the next steps would be handled by Izzy's PCP.  So yesterday we set off to see the doctor :p  The nurse gave her stickers while we were waiting so first she hid under the exam table with them:

When she came out of hiding, she wanted to show off her stickers
And then she decorated the diaper bag :p




So, there were a few things on the MRI report.  First, it appears there's some abnormalities with her pineal which I'm told regulates the production of melatonin.  This might explain why she's a poor sleeper :p  But its "normal" enough that there are no recommended treatment plans at this time.

Then there's the Rathke's cleft cyst.  Recommendation is to run an endocrine panel (which her doc already had an order written up and we went for that lab draw after the appointment) and to also, at some point, get an MRI with and without contrast of the pituitary gland. 

There is also some concern about the myelination in her brain and they are asking we do another MRI in one year to check her growth and development and make sure the myelin sheaths are where they are supposed to be.

Now, Iz is not showing any outward signs of a problem with the pituitary gland but we have a pretty good track record of "just in case" checks turning up a problem so we are going to go ahead her endocrine function.  If any of the numbers are off, she will be referred to an endocrinologist and we will set up the MRI of her pituitary gland.  If her numbers are fine, we will wait on the pituitary gland MRI until it can be combined with the one in a year for the myelin.  Unless some problem develops, of course. 

So now we just wait to see what her labwork says!