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Friday, March 28, 2014

Warning--Picture heavy!

Today, S was invited to spend the night at my parents' house so after I picked him up, I took him over there.  We all visited for a while and then I took the little ones to get some dinner.  It was a tad chilly but the sun was shining and I knew a walking path were the wind would be mostly blocked for trees so I asked the Littles if they would like to go for a walk.  It was a resounding YES!  They are just as tired of being cooped up because of the cold as I am :p  So off we went to one of our favorite parks to walk in :)

Some fishermen and lots of birds
When we arrived, I parked near the lake and oh, boy, was my little B ever excited!  There were people out on the frozen lake!!  He insisted we needed pictures.  He has heard of ice fishing because his Dad likes to go but I don't think he really knew what ice fishing meant until today.  He was just in awe of people sitting out on the ice and fishing through little holes.  He kept trying to yell "HI" to the guys out on the ice and wasn't so sure I was right when I told him they were too far away to hear him and he should try to be quieter so he didn't disturb the other people there.  I finally told him his shouting would scare the fish so I could get him to stop screaming across the ice--it worked!  He was worried about scaring the fish so he talked in a whisper until we were further away from the ice fishermen.  Oh, and he thought my first picture of the men fishing on the ice was "too small" and I should go across the ice to get closer.  I showed him how to zoom in with the camera and he settled for that :p 
Ice fisherman close up!

B and Iz were ready and willing to go for a walk on the ice but I suggested we stick to the walking path and while they were disappointed, they agreed ;)

He really wanted a picture with this wet spot.  I don't even know.....

We briefly lost the sun behind the clouds
We'd only gone about six tenths of a mile when they spotted a bench overlooking a smaller lake and decided they needed to sit down and rest :)  I believe they sat still for a whole thirty seconds before they were up and at 'em again.

B declared we were climbing a mountain and needed sticks to help us up
At a little under a mile we reached a pavilion with big binoculars.  They were so excited when they saw the pavilion because they recognized it!  Normally when we walk at this park, we start out at this pavilion :)  The sun was beginning to set and was blinding!  The only way to get a picture was to use the roof of the pavilion to block the sun enough to get a picture.  The sun sure did feel good, though!
Every single time we come to this pavilion, three things need to happen:
  • They must run like crazy people back and forth and around the perimeter
  • They must sit on the benches.  Usually all of them.  In order.

  • And they absolutely must look through every pair of binoculars, multiple times.  And while they wait for me to lift them high enough, they must stand on the foot rests :p

They really wanted to continue on the trail but I wasn't so sure Iz could make it further and then all the way back plus I could already feel the temperature dropping as the sun dropped behind the horizon.  So off we went back to the parking lot.  One and three-tenths of a mile in total and Iz was fine and ready to go longer when we got back!  Maybe by the end of summer her stamina will be up enough for us to go all the way around the lake :)  We've never made it all the way around!

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!

Monday, March 24, 2014

hey, want another diagnosis?

So speech.  We all know how well that is going--Iz rarely speaks.  In fact, she rarely speaks in most places we go.  Dr appointments.  Play group.  Specialist appointments.  Testing.  Even Grandma and Grandpa's house.  Wherever we go (or someone comes to us) where people not in our core family are present, she does not speak.  If we are lucky, she might grunt or point and maybe, must maybe, eventually talk a little. 

Our SLP is thinking Selective Mutism:

We already know Iz suffers from anxiety so it would actually not be surprising if she is suffering from an anxiety driven communication issue.  At this point, we are going to try and coordinate with her therapist to come to a speech session and see what's going on and she and the SLP can work together to come up with a plan to get Iz past her anxiety so she can benefit from her speech therapy.  She has 36 visits total approved by insurance and we've already used up 8 of them--Iz needs to get on the speech bandwagon soon!  If she's not participating in speech, insurance isn't going to approve another set of sessions when this one runs out :\

Today's visit started with Iz hiding from the SLP but she did eventually come out to play a little.  She insisted on wearing her coat and boots, something she hasn't done in several visits.  After she was done hiding under the table, she mostly pointed at things and grunted a few times.  Towards the end we got a few words but by the time she says something, its time to go!

Friday, March 21, 2014

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

Thursday, March 20, 2014

Hello, Wednesday!

Wednesday is Izzy's Early Intervention Playgroup. She loves Playgroup.  All week she talks about Playgroup.  She asks every morning if she is going to "skool" today (her playgroup is held in the same building as B's preschool, just a few doors down from his classroom).  She talks about the people she is going to see, particularly another little girl just a few months younger, Emma.  Izzy loves Emma about as much as she loves playgroup :)  However, once we arrive?  Iz wants nothing to do with anyone.  She won't talk to anyone, won't look at anyone, if someone (child or adult) tries to join her in play, she walks away and does something else.


She has little moments of sociability, though, so at least we are moving in the right direction :)  She voluntarily engaged one of the teachers in some pretend play (she poured her a pretend glass of milk and then left the play area).  She interacted with Emma and another little boy briefly over some toys (and then walked away).  She danced a little bit during the song at circle time (normally she stands or sits and just stares).  And she even did a few of the hand movements for one of the songs (again, typically she just stares). 

Once we left the school and were in the parking lot, she chattered up a storm and talked about the fun she had had LOL  One of the teachers today asked me if she was upset because she looked mad most of the time and I said, nope, that's just her default face lately. 

Wednesday, March 19, 2014

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. 

Monday, March 17, 2014


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

Saturday, March 15, 2014

The snow is almost gone....

On Wednesday the wind and snow was so bad we could barely see the house next to us.  Thursday was COLD COLD COLD and so very icy that we were out of school for a second day.  Friday was a bit warmer but our driveway was one big sheet of ice--by the afternoon, though, it had weakened in the sun and S and I were out there breaking the ice up and shoveling it away.  Today?  Almost all the snow has melted away and it is wet and muddy and looks kind of dismal.  Not the last we are supposed to see of snow, though!  Forecast says more snow later this week.  We need about three more inches to break a record from the late 1800s.  I'm so ready for this winter to be over :p

I finally got the call to schedule Izzy's MRI--got through all the screening questions and registration information and the lady hadn't realized Izzy was a heart patient.  So she can't schedule the MRI until we get cardiac clearance because of the sedation.  She called me Friday late afternoon and I immediately called over to the cardiologist office but her cardio was already out of the office.  The nurse pulled all the paperwork and filled it out and said he sometimes comes back into the main office before he goes home (he has three different offices plus he sees patients at the hospital as well--I am always pleasantly surprised when he stops by our room when we are inpatient for things not cardiac-related :)  its nice to know he keeps an eye on her even when she's not directly under his care!) so she might be able to fax it over the same day.  No phone call back from MRI Friday, though, so hopefully Monday.  The sedation makes me nervous but now that its going to happen, I kinda just want to get it over with so I don't have to worry about it :p

Friday, March 14, 2014

My busy little B

Last night we had dessert, a much beloved thing in our house but not one that happens often enough according to my children ;)  I made "homemade" jello--unflavored gelatin packets mixed with 100% juice.  It has apparently been a while since I made it and B did not remember what it was.

He comes up to me and holds up a jello square (made it kinda firm since last time they didn't like it because it was too "soft") and says, "Whast dis?"

"Jello," I tell him.


"That's just what they call it.  Its wiggly, isn't it?"

"I want more"

Hahaha--now that I know what it is, I'll demand more before I even finish what I have :p 

Thursday, March 13, 2014

Field Trip!

A little while back, Iz's EI  group had a field trip to a local sporting goods store.  They had a tour guide who told some stories of some of the animals on display and let them feed the fish in the pond.  We have been to this store many many times--the kids' dad kinda loves this place :p  And their favorite part is the giant aquariums :)  Normally B can't go to playgroup but since it was a field trip, siblings not in school were welcome to come so off we went!

B was very vocal about wanting his picture taken with the elephant so he gave me a big ole cheesy grin:

Iz decided she wanted a "pitter, mama!" but she would not hold still so you get slightly blurry Iz :p

Later that night, Iz found some new glasses to wear and she had a blast trying to figure out how to make them stay on her face LOL  (They belong to Mr. Potato Head).  She kept saying she had glasses like me and S :p  She was also in a mood to show off her zipper--it is looking really good!  She seems to have lost most of the sensitivity around it and doesn't mind having it touched most of the time.  She is still very hesitant to let doctors and stethoscopes near the scar but normal everyday stuff doesn't seem to bother her anymore :)

Wednesday, March 12, 2014

Yesterday during snack time, Iz discovered the joys of fruit in a pouch :p  I know, I know, they've been around forever but I've never bought them.  A good coupon plus a sale enticed me to buy them over the weekend and Iz had her first one yesterday.  She didn't even need me to show her what to do--she knew just how to eat fruit in a pouch LOL  All of the kids now want these every day but they are out of luck unless I come across more great coupons and sales ;-)

Today, though, Little Miss is a Grumpy McGrumperson.  She is MAD that she can't go to playgroup--the snow hit us and is still coming down and so all schools in our immediate area are cancelled, including the local college which hardly ever closes down.  So no playgroup.  And Grumpy Iz :p

Tuesday, March 11, 2014

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?

Monday, March 10, 2014

Our last speech session went a little better.  Iz went in, took off her coat and boots and put them away, picked out her chair, and responded when Miss Emily asked her if she wanted to get the house down first.  We had a little talking/sounds out of her while they furnished the house but not a whole lot.  Then they read a book, again with minimal response out of Iz but at least there was some response ;)  When it was time to go, Iz ran over to the box of cards (which they normally do first but hadn't gotten to that day) and asked to do them.  Ha!  One reason Miss Emily didn't start with them is because she was trying to find something that will get Iz talking and practicing and she never makes a sound during cards :p  We are thinking about making her sessions fifteen minutes longer to see if a little extra time will help her get comfortable and maybe participate a little since she tends to be more vocal at the very end.

I'm not sure if we will be going to speech today, though.  Iz has a neurology appointment and I'm not positive if she will be out before speech starts  (and if she is out of neurology on time, will we have time to get to speech.  They are in two different buildings--same campus but still takes a little time to get from one to the other).

Monday, March 3, 2014

Our Continuing Adventures in Speech Therapy

Iz has been doing well with her therapy homework over the weekend.  She has tried her best to copy the hand movements and sounds and she was trying to teach her brothers how to do it, too :)  She also has been correcting me!  I wasn't paying close enough attention this morning and I made the gesture for the K sound instead of W and she told me "no no no!  Dis!" and then made the correct W gesture :p 

Things looked promising when we got to therapy.  She lowered her head and looked at the floor with Miss Emily spoke to her but instead of crawling under the table when we got to the room, she hung her coat up on the door knob, took off her boots and lined them up next to the door, picked out a chair at the table and sat down.  She still wouldn't participate at first but eventually she gave some shrugs and grunts and fed the flash cards to the toy alligator :p  We did get a few words when it came time for free play--she wanted that house down! 

She's making some progress as far as participating in class and she is doing well at home.  Miss Emily gave us some new cards to do at home, too, and we learned a couple of new sound gestures to work on.  We don't really use the cards at home--when I pull them out, she clams up.  But I'll flip through them to remind myself which words/sounds we are working on, and then just casually do them with her and then she also sometimes picks out words on her own that fit in with what we are doing (her favorite was adding Piper whenever we practice the word kitty).  Most of her speech practice comes before nap time.  I lay down with her and we run through our list of words and then do her favorites multiple times while she is settling down and drifting off :)  She also likes to do them in the car but we can't do the gestures then :p