Another busy day

But today it was Izzy's turn to be busy.  We started off with therapy with her psychologist and then headed over to do her sleep deprived EEG.  She never did nap the way they wanted but the EEG tech did get her to lay quietly with her eyes closed so they could get the data they needed.  Unfortunately, her results were abnormal, showing activity in the right temporal lobe.  The neurologist was hoping she would have outgrown it but nope, still there.  We went up on her seizure meds again so hopefully some of those breakthrough seizures and symptoms she has been having will stop.

Iz update

Iz is mostly holding steady.  She's had a few of her regular specialist visits and things are mostly staying the same but we do have some testing coming up.  The big one is a sleep deprived EEG like W did.  Keeping her up actually shouldn't be too hard since all I have to do is skip her melatonin :p  But man, she'll be grumpy when the time comes.

Our other big change is that developmental recommended she restart OT so we have an evaluation coming up to see if she will qualify again to do it.  She is excited because she loves OT :p  She's started chewing things again (she turned a set of mini blinds into confetti o_O ) so at the very least OT could help with that!

EEG results are in

And it was perfectly normal.  Which is good because hey, normal! But bad because we still have no definitive answers on why he has periods of extreme instability :\  Neuro is thinking migraines but there's not really anything at this age that will tell us yay or nay because he can't tell us about it so its all a guessing game.  I hate health guessing games :p

Friday was EEG time!

Friday W had a sleep deprived EEG.  That was not fun to prepare for :p  Had to get four hours less sleep the night before--I did not want to get up at 3am to wake him up and keep him awake until our 1:30 pm appointment so he and I stayed up late together.  He did well the first few hours but at three hours down, one to go, he kept trying to crawl into my lap and sleep

I dug out some toys we haven't played with in a while and that got us a brief burst of energy

But soon, I caught him sneaking a pillow case and baby blanket out of my clean laundry and attempting to make a bed on the floor for himself

Luckily for him, we were almost at our four hours and were able to head upstairs to get ready for bed and he got to sleep :p

The next day he had to skip his naps as well and gee, was that ever fun as well.  We ran errands so the constant moving about helped but if places were more than ten minutes apart he was fighting to sleep in the car and we had to keep jiggling him and trying to engage him to stay awake.

Finally, it was time!  We got all checked in and they brought us upstairs......and we had to wait in another waiting room :p  It wasn't so bad, though, because we were on the second floor and there were lots of windows so he could look around instead of trying to crawl into my lap and sleep again. He couldn't decide which set of windows was the best to look out of so he did a lot of back and forth :p

Finally, it was time to go to his room.  He did awesome getting hooked up--stayed pretty calm and played with toys while they got the leads measured out and attached.  Once he was all hooked up, we moved to a rocking chair and I held him while rocking so he could finally nap and then he fought sleep for a long time :p  But he finally dropped off and slept hard until it was time for them to wake him for the next segment of the EEG.  OH MY GOODNESS.  The screaming!  The fighting!  He was so mad they woke him up and screamed his displeasure for a long long time. But finally he calmed down and looked tired and miserable :(

A few minutes after this they unhooked him and washed his hair and we headed home but he never did sleep again until bedtime!

They said 1-2 weeks to get the results

The Big Neurology Appointment

A few months back Baby W's pediatrician referred him over to the same neurologist B and Iz see but her schedule is always so full it was a wait to get a new patient appointment with her.  The main reason he was going to see her is his balance--he will be fine and really coordinated and then he'll go through periods, at least a few times a week, where he falls constantly, walks into things, even falls over while sitting or standing still.  B and Iz were like that as well but they also had moments where they completely blanked out and once those blank moments were identified as absence seizures and they went on medicine, their balance and coordination improved tremendously.

W doesn't have those other symptoms that would suggest seizures.  However, because two siblings suffer from seizures, W is going to do a sleep deprived two hour EEG (and won't it be fun to keep him awake!) just to see if there's anything going on.  For both B and Iz, their short EEGs (20 minutes for them) showed issues immediately and their 24 hour EEGs confirmed that they had active spots 24/7.  The seizure meds calm those spots down and the absence seizures and other symptoms improved.

If the EEG is fine and all of the lab work she ordered for W are fine, it will rule out some possible causes of balance issues.  She thinks, based on his symptoms and the timing of his "episodes" that he may possibly be having pain-free migraine activity.  I suffer from migraines and apparently that puts all the kids at a 50% risk of developing them as well.  Since he has been injuring himself, she is thinking we might want to try a migraine medication and if it stops or greatly reduces his "episodes" that would be a good indication that he having migraine activity.  We'll get through all the testing first before we make any decisions.

Much has happened!

I am shamefully behind (again) on updating so of course there is much to share!

Baby W had another swallow study done in the beginning of December.  We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be.  He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on.  However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time.  So back to three times a week for three months!  We just started on month three so the end is (sort of) in sight.

I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :)  We get some minor spit up maybe once or twice a week and even that is becoming less common.  I am cautiously optimistic in saying I think maybe we might be done with reflux meds.

The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes.  She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal.  My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-)  I told  her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it.  With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now.  He has had the neverending ear and sinus infection.  Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill.  Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday.  Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.

My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago.  In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL).  He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart.  I'm not sure where he put it all but he's been eating everything in sight at home as well.  I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p  Sorry, went off on a food tangent.  Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it.  During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came?  He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable.  He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry.  They survived, though, and B was so relieved when the EEG ladies came to take it all off.  No results yet, though :\

Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her.  It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it.  Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out.  Then came severe separation anxiety.  Then came selective mutism.  Now we seem to be entering an aggressive phase.  Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel.  I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :) 

Feeling frustrated.....

For years, my busy little B has had pretty bad meltdowns, to the point where he would need to be physically restrained and his preschool classroom sometimes had to be cleared out until he calmed down.  The severity of these meltdowns and the suddenness of their ending made his pediatrician wonder if he could be having seizure activity like his sister.  She referred us to neurology and we took him to the same neurologist Iz sees.  The neurologist thought seizure activity could possible explain the meltdowns as well (not positive but possible) and B's EEG showed similar abnormal brain activity like Iz's so B started medication.  His dosage has been raised a few times and the frequency of the meltdowns has changed--they are few and far between now.  He's never had one at school this year so the kinder teacher has never seen what he used to be like.  Now, though, he is on the opposite extreme--he will completely shut down, refuse to participate or talk or move.  Honestly, though, the shut down is a million times better than the meltdown--at least with a shut down I don't have to be worried he will hurt himself or others.

The shut downs don't frustrate me.  When they happen at home, we treat them much as we would a mild meltdown--we leave him alone once we've made sure he doesn't seem to be currently having a seizure and he's okay and that gives him time to collect himself and come back to us.  However, his teacher called me and wanted me to punish him at home for having a shut down at school :-|  THAT frustrates me to no end.  She in insistent that this is all control issue and that he will just not work at school and then I'll let him play all evening and she can't have that.  A control struggle with B looks very very different.  He may refuse to do something, he may even refuse to talk to you while he is refusing to comply, but he never stops moving.  He wiggles, he spins, he wriggles around while sitting down, he looks all over the room.  The hyperactivity part of his ADHD does not stop because he is trying to exert control over a situation.  A shut down, though?  He is still.

I tried to talk to her about what his shut downs at home are like, about his OCD tendencies that can kick in and make him lose it over things that normally are just routine, about his anxieties that flare up without warning.  But she just kept insisting its a control thing and I need to punish him.  I talked it over with B's therapist and she is feeling the same frustration I am!  She has seen B's meltdowns and shutdowns as well as him trying to exert control and yeah, a shut down is not a control move.

At the moment, I'm at a loss on how to get through to this teacher.  I need to figure something out :\

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 ;)

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.

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.

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 :( 

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

MRI results!

When Iz came back from her MRI, she did NOT want to wake up.  Kiddo just wanted to sleep and sleep and sleep.  Her nurses (she had two at this point) and the doctor joked that she exhausted herself fight the sedation so now she needed extra sleep :p  And she did fight it, right up to the end.  One of the nurses remarked on how surprised she was Iz was still awake and moving so far into the medication drip.  But she did eventually go to sleep and went back for her MRI. And in recovery, she slept and slept and slept :p

It probably didn't help that this was during her normal naptime as well.  Eventually we got a few stirs from her but she'd crack one eye open, peek at me, and then go right back to sleep.  Even sitting her up didn't rouse her much.

Eventually, though, she did wake up enough to agree to a Popsicle, followed by teddy grahams and a water (she didn't want the juice the nurse offered but was all for a bottle of water!).

 

Up until this point, she had only said a few words to me in a whisper but I think the medications were making her a little loopy because when she finished her teddy grahams, she belted out in a clear loud voice "ALL GONE NOW.  I WANT TO GO. I WANT MY PAWPAW."  LOL  They could hear her all over the recovery unit :p  So we packed up and off we went to the car.  I had her stroller, which was a very good thing as she was nodding off while we walked and I'm pretty sure she was asleep before we even left the parking garage.  She was a little wobbly the rest of the day and part of the next but I was told the meds would be in her system for about 24 hours so expect her to be a little "off".  That didn't slow her down--the doctors orders to sit and watch tv?  She wasn't having any of it.  We had her running around in my dads yard so at least when she fell over, it was in the soft grass :p  She wasn't going to just sit around!

I got the call late yesterday afternoon with the results.  She has a cyst in her brain near the pituitary gland called a Rathke’s cleft cyst.  Neurology says that these cysts are normally harmless if they remain small but can interfere with the pituitary gland.  Next step is to talk to the pediatrician and see if she wants to do some lab work (endocrine panel) to see if the pituitary is being affected.  I'd prefer to do the panel, just in case.  Neurology also said it is very unlikely that this cyst is causing her abnormal EEG so no answers there--next up is May's 24-hour EEG.

She speaks!!

When we went to playgroup on Wednesday, I thought it was going to be a rough day because the first thing Iz did when we arrived was to hide behind me.  And then she laid on the floor and covered her eyes (in her mind, no one can see her if she covers her eyes).  She did eventually start to play a little but if anyone spoke to her, she would cover her eyes. 

She moved over to the play kitchen (one of her favorites) and started to play with me and she didn't leave when other kids came over!  She interacted with them a little bit but mostly played by herself but not leaving when they came over is pretty big for her :p 

The EI teacher in charge of her playgroup is concerned by her lack of social skills and the big regression we've seen as far as speech and anxiety and is recommending Iz get another full evaluation for services to see if she qualifies to move into the next program to get extra support to help her reach her social/emotional developmental milestones.  She's not sure its severe enough to get her into B's program, which is a special education preschool program, but she may qualify to move into their "regular" early childhood education program with extra support.  We talked a bit about Iz's unknown neurological issues and the teacher is thinking we should do the evaluations towards the end of the year to give neurology time to do their tests and try to figure out what's going on so we know if the neuro issues could be causing the social/emotional issues (Iz has also started having outbursts than can rival B.  This is around the age it started with B so there is some concern that she could have whatever B has--he's got an appointment with a neuropsych coming up so we can try to figure it out!  Iz could just me mimicking his behavior but who knows :\).  So we'll see what happens.

At one point, all of the students and parents were on one side of the room and Iz led me over to the other side to play with her and she started talking to me--last week, not one word out of her the entire time (hour and a half) so her talking to me while we were in the room was great :)  Her favorite little girl came over and Iz talked a little to her as well.  She talked a little on and off the rest of the session so that was nice!  And she sort of participated in some of the songs/games during circle time :p

Yesterday was speech therapy and she opened up there and spoke to Miss Emily, too!  We are apparently on a roll this week :D   The first word she said to Emily was an accident, I think.  Up to that point, she'd been pointing or grunting or mouthing words with no sound.  But a word popped out and it seemed to open the floodgates because a few minutes later, after trying out single words here and there, she was talking up a storm.  Emily is impressed with her grammar LOL  She may not be able to say the words clearly but she knows how to put them together ;)

Her therapist (who we saw Tuesday) is going to try to come to a speech session so she and Emily (and I) can coordinate to try and get Iz over this anxiety that is keeping her from speaking.  She couldn't make it yesterday because she couldn't rearrange her schedule but she's trying to shuffle some things around to make it next week.  If she can't, we'll try to move one speech session to a time all of us can do and then go back to our normal time.

We've got several things coming up!  In a little less than two weeks we have Iz's MRI, B's neuropsych appointment, Mr. Piper is coming for a week, we have another genetics appointment, and then in a little over a month we have a 24-hour EEG.  I was told the EEG was an overnight but when they called to schedule they said nope, full 24-hours.  Yikes.  Luckily, we were able to schedule it during a time Mr. Piper will be home (not til May, though) because I have to have a second adult there.  I wish I had thought to ask some more questions :p  Will she be tethered to a machine in her room?  Because keeping a toddler in a hospital room is not fun.  Or is there some sort of portable machine so she can walk around the hospital and go to the playroom?  Guess we'll find out when we get there in May!

A call from neurology & Iz talks to her speech therapist

So neurology called today with the results from the EEG.  The LPN we saw at our last appointment was the one to call and when she said the results were abnormal, I told her I had thought they would be based on the reactions of the woman doing the test as she watched the monitors.  I mean, when she is leaning back watching the screen and suddenly sits straight up and stares intently at the screen and starts asking questions about recent head injuries (there haven't been any major ones.  Just the normal bumps on the head Iz gets almost daily from the falling and walking into things.  One of the reasons I was given a referral to neurology and why neuro sent her to EEG), you kinda figure something is up and what she is seeing on the screen is not what they want to see on the screen :\  So it really wasn't news to me that the results weren't fine, although I had still been hoping I was wrong. 

At this point, they know she has unusual activity in the right side and the background waves are slow.  Based on the area, it could be cause seizures but that short EEG didn't pick up any seizure activity.  This could be a structural problem, perhaps something she was born with, but we won't know anything for sure until more tests are run.  The neurologist looked over her results, went over the LPN's notes from our last visit and Izzy's file (they pull everything in neuro so they have her notes from genetics and speech and basically anything submitted into the computer system) and he doesn't think it is something that needs immediate attention or medication so for now we just wait for our tests.  The MRI is already booked for April 8th and he is fine with that time frame.  They are contacting our insurance to get an overnight EEG approved and as soon as they get the okay, they will call to schedule.  Two adults have to be there with her, though, because she will be allowed to move around and we have to make sure she doesn't pull the leads off her head so someone has to be watching her all the time, even when she is asleep.  I am really really hoping they have an opening to do it the week her Dad is here from North Dakota for a visit because I'm not sure who else I could get to go with me :p  Most of the time I can juggle all this medical stuff alone but there are days that having a husband working in another state just doesn't work for me anymore :p  We'll figure it out, somehow, right?

Okay, on to happier news!  Iz talked to her speech therapist!!  She and I were sitting in the waiting room "reading" a book together--there was a big storybook of cartoon shows from my childhood on the table so we were looking through it and the stories were too long for her to follow so we were flipping pages and talking about what she saw on each one and what she thought was happening :)  When Miss Emily came up to get us, Iz jumped right up and headed for the room :)  She took her coat off and put it and her shoes away and was ready to go.  She even made eye contact instead of looking at the floor!

At first, she was just pointing at things but she was interacting with Emily so that was a big improvement but it didn't actually take long for her to start talking.  They played with toys and read a book together and Iz had a good time :)  She has become very resistant to doing any formal speech practice at home and I was telling Emily I sneak it in when we are just doing normal activities--sometimes I can use the words Emily gave us to work with, sometimes I use new ones that match the cvcv pattern we are working on that fit in with what we are doing.  The closest we get to formal now is when I work with B on her words--he thinks it is so much fun to do and she will come running to do it with him, just not if I do it every day.  So every couple of days B and I will start doing words and she will come join in. 

She's a stubborn one :p

Our EEG was today....

...and the Little Miss hated it. 

She was actually excited to go to the hospital.  We've been talking about this appointment for days, S has been telling her about his EEG so she'd know what to expect and not be scared, and the last few days she has been asking if it is "hosperry day".  And then we walked into registration and poor kid just sorta shut down :\  Stared at the floor, wouldn't look at anyone, the "doctor mode".

For some reason, outpatient registration was closed today and a sharpie on cardboard sign told us to go to Imaging on the second floor to register.  Now, I don't know how many of remember this but the second floor is the surgical floor.  The floor where I had to hand over all three of my babies for four different surgeries (some major, like OHS, some minor, like ear tubes) over the last two years.  FOUR.  And the minor ones were as scary as Izzy's OHS, just in a different way, if that makes sense.  Whenever there is sedation and they list "death" as a potential risk, it is scary :|  Normally when I need to go to the second floor, I'm prepared for it.  I have time to think it over, to process, to be mentally ready to step off that elevator.  Caught me by surprise today. 

Iz perked up when we walked out of registration because we were heading for the elevators and that meant buttons to push.  I was thinking this would be no big deal, we had been back to the second floor lots of times, and then the elevator door opened and all the sights and sounds and smells rushed in and yep, not prepared at all.  We made it through, though, and got registered and were on our way back up the elevator to the EEG lab.

The lady doing the EEG was really good with Iz :)  She let Iz relax and get comfortable, play with some of the stuff, look around.  She had this little card with a kid drawn on it and it had velcro along the forehead--teensy tiny EEG wires were hanging off the card with velcro on the ends and you could stick them onto the kid's forehead :p  Iz LOVED playing with it.  Unfortunately, all she wanted to do was play and dance and bop around and they needed her to be still :\  So she had to be swaddled (the lady called it bundled but it was swaddling with a big sheet instead of a baby blanket :p) and taped down to the bed.  She looked like she was in a little cocoon.  And she was miserable--she did NOT like being restrained at all.  But at least it was mad Iz rather than scared Iz?  She didn't act scared, just mad that she was being held still.  The lady got her all hooked up and Iz quieted down and watched Mickey Mouse. 

Towards the end, though, Iz got mad all over again and managed to get her arm out :p  Apparently that was a first for the ladies working that day and a couple of them stopped by to say hello to Houdini LOL  Iz insisted that I hold the hand she had worked out of her cocoon and finished her cartoon.  And she took some selfies with her free hand (I held my camera for her) but gosh, she looks so miserable in them.  I think she was cussing the lady out in whatever passes for cussing in toddler world ;)

As soon as the tape was cut and she could move around, she tried to settle in and keep watching cartoons.  Little imp.  The lady also gave her a purple wooden hippo with wheels so she left a happy kid and ready to go back again.  I, however, would be glad to skip any more EEGs and am hoping all looks good with this one so we don't have to do the longer one!

We also heard back from MRI and we are on the books for April 8th. 

Progress!

Once again, Iz was excited to go to speech therapy.  She talked about doing words with Miss Emily, playing with Miss Emily, having fun with Miss Emily.  And then we arrived.

She goes in, hangs up her coats, puts her shoes next to the door, settles down on the floor where they normally play.....and then refuses to talk or make eye contact with Miss Emily :p  They read books today and Iz started warming up fairly quickly.  She didn't talk but she did point at the pictures to answer questions.  Emily would ask if a character was happy or sad and Iz would point to their smile. 

At one point, Iz hid behind Emily and was giggling--she was initiating play, which is a big step for her.  They played for a few moments and went back to reading.  Iz started talking a little tiny bit and before we knew it, it was time to go and Iz was using her words to ask Emily to get down the house, please.  Poor little bug!  She finally gets a sentence out and we have to say no because it is time to go.  Hopefully on Thursday she remembers that its ok to use her words and we have a good session with some house playing :)

Tomorrow is Izzy's EEG.  I sure do hope she cooperates :p

Neurology Follow-up

Iz had the appointment right after the office lunch hour so I tried to time it to get there right at one so we wouldn't have to wait too long.  We got our timing right but the office staff was a little late getting back :p  Iz remembered being there and was impatient to get inside and kept peering through their windows.  She did not want to wait in the waiting room across the hall like we did last time so we walked up and down the halls and looked at the artwork on the walls.  This particular hallway had an animal theme :)

When the office opened, we went back right away.  Last time we had a room where the bed was a fire engine but this time we got the regular room.  She didn't mind, though, because toys!

We were seeing the LPN this time (her neurologist is on vacation) just to check up on her progress.  Last time Dr. W and I had discussed an MRI--he wanted to hold off because nothing jumped out at him neurologically that couldn't possibly be just her development and he wanted to give her time to make some progress on her own.  However, she really isn't any further ahead than where she was back in November when we first saw him.  The LPN did get her to talk a little by bribing her with a cool fish toy to play with and she was able to hear that the majority of Iz's long speech is babble.  We talked some more about her falling and walking into things and how it goes in cycles--sometimes it rarely happens and then it will happen all the time (which is the part of the cycle we are in right now). 

Just to be safe, the LPN referred her to get a routine EEG.  My family has a history of epilepsy and since most of Iz's falls are unexplained (she'll be sitting on a chair and just fall off for no apparent reason), she wants to check for seizures.  The EEG may not show anything since some seizure activity doesn't show up unless they are actively happening but its a place to start and once we get the results, Dr. W can decide if he wants a 24 hour EEG.

She also went ahead and is setting up the MRI.  Dr. W wanted to wait and see if she is making progress but she isn't so MRI it is.  I hate the thought of sedation but if something is going on, I want to know.  And while he doesn't see anything major, but he and the LPN have that little niggling doubt in their minds that say something could be happening.  So fingers crossed that all is well but either way, at least we'll know.

Once the LPN was done, Iz did not want to give the fish back :p  She sure did love that fish!  She agreed that he could go back to the LPN's bag for a nap after she took some pictures with it.  Some I took, others I held the phone and she pushed the button--I have a lot of Iz & fish selfies on my phone LOL

And what trip to the doctor's office isn't complete without snooping in drawers?

Today was just peachy

My oldest is off school all week for Thanksgiving break and my middle child doesn't get on the bus until a bit after 11am so today was a chance to sleep in just a little bit.  Everyone stayed up a little later so they would sleep later and it worked!  Almost.  Iz's internal clock is precise and so she was up at the usual time :p  She did, however, agree to lay and cuddle for a bit so while I was awake, at least I wasn't up up.

B's bus was a bit later than normal so we were running behind schedule but not too badly--we would still have plenty of time to drop off Iz and make S's appointment.  We take Iz to PawPaw's house, get her settled in and off we went!  S was both excited and nervous--he worried that the EEG was going to read his mind and he wasn't sure he wanted them to know what he was thinking :p

And then, as we are driving along, BANG.  Out goes our tire :\  We wait nearly an hour for roadside assistance (I cannot get the lug nuts off a tire to change it.  The tow truck driver had trouble getting them off as well and even commented on how tight they were.  No way would I have been able to get them off).  I call up the lab and they say no one is scheduled after S so if we don't mind going in late, they don't mind.  So we get there 40 minutes late, it takes forever to get S hooked up to all the leads and stuff for the EEG......and the equipment isn't working properly.  The two guys in the lab are doing everything they can think of to get stuff working but it just isn't happening.  So the EEG hasn't been done and poor S never got to see his brain waves on the screen.  If they can get the equipment up and running, they will call to reschedule so maybe S will still get to see it :p