Who wants another specialist?

We thought Baby W's ears and sinuses were finally clear back before his MRI--then the MRI itself showed he still had fluid in the ears and mucous in his sinuses but he didn't appear to be ill so it was a wait and see game.  He developed a really minor sniffly nose.  We were waiting it out, seeing if it would develop into something more, hoping it would clear up so we could finally go and get the vaccines we've been putting off due to illness since December.  I thought that this was our week!  We'd pop in, get shots, be done with it!  And, then Baby W started going off food and drink, being extra fussy and clingy, not sleeping well, and then telling me his ears were an "owie".  *sigh*

Sure enough, an early morning run to the pediatrician shows that we have yet another infection.  Antibiotic four.  At least another two week delay in vaccinations (if he's even well by the recheck!).  We now have a referral to ENT and an appointment set up with them for a week away.  My Busy Little B could not keep the fluid out of his ears either and had to get tubes when he was three (the Year of Surgery--2012 saw all the kids having surgery of one kind or another!).  I don't know if this is the route W will  have to go down as well but I sure do hope the ENT can at least help us finally beat all these infections! 

The Adventures of Duck: Day One

When Baby W had his MRI, they gave him a little duck to play with.  This hospital is known for its ducks (well, known to my kids at least--they love the tiny rubber duckies!) and they have all kinds of different "costumes".  My kiddos love to get new ducks--actually, so do I!  They had an Elvis duck the other day and I was pretty disappointed my daughter chose a green and white duck instead ;)  On the day of his MRI, the only duck the registration lady had was a yellow duck with a sombrero and maraca and my husband grew so attached to him, Duck went on the road with him!  The kids absolutely love seeing Duck's Adventures and wait impatiently for new photos to come through  :)  Honestly, he's on the road so much that all the pictures are pretty much the same ones we've already seen but the addition of Duck has made them exciting again for the kids :P

 Duck's first picture came through while he was still in our driveway!  The kids thought it was hilarious that Duck's first "post" on my phone popped up when they could still see him outside the window.  Mr. Piper is piloting a semi carrying a large building down to Texas so he had to get his signs and flags up before he left to go meet up with the semi.

 The kids think Duck should send photos way more often than he does but he tends to be stingy with his posts ;)  They do like seeing some of the signs showing places they are familiar with!

 My Busy Little B loved seeing Duck pump gas :p  He thought it was hilarious!

Uh oh.  The big semi's check engine light came on so they had some downtime checking things out to see what was wrong.  Duck worked hard to fix things and eventually they were on the road again.

MRI

Yesterday was Baby W's MRI to check his brain/nerves to rule out possible causes for his swallowing difficulties and developmental delays.  We had a check in of 9am but an MRI time of 10:30 so we had lots of time for exploring his hospital room :)  Child Life brought him cars to play with and we put music on to listen to and aside from staff coming and going, he thought it was a fine and fun thing to be at the hospital!

Things got NOT FUN when they came to take him away--he had to sit on the bed to be rolled through the halls and tunnels (the actual MRI was in the adult hospital instead of the Children's Hospital) and he decided he was not doing it, nope, no way.  His Dad got on the bed and held him and he cried for a few minutes and then decided it was okay to calm down and watch since he was safe in Daddy's arms :)

Because of his swallowing difficulties he had to be under anesthesia instead of just sedation so when we got to the MRI room, they used a tiny mask to put him to sleep and then off to the waiting room we went while they got him intubated and set up with all his wires and monitors and IV.

He woke up MAD.  They said he started spinning in circles on the bed and thrashing and when they tried to hold him he was kicking and fighting.  They came and got me (the bed was only halfway through the doorway of MRI so he really woke up fast and fighting LOL) and as soon as he was in my arms, he calmed down, put his little arms around my neck, put his head on my shoulder, and was fast asleep and snoring in seconds.  So it was my turn to ride on the bed holding him while we went all the way back to the Children's Hospital.

It took him a while to wake up fully but once he did he devoured the breakfast the nurse ordered him (scrambled eggs and fruit) and then we were off home and he was absolutely fine the rest of the day.

Today they called--the brain looks fine, no abnormal anatomy.  But his ears are full of fluid again (we've been dealing with ear and sinus infections for months--he was finally clear last week but maybe not for long.....). 

Does anyone ever get used to this?

Between all of the kids, we've been through sedation a number of times since that first surgery in 2012 but whether it's major or minor surgery or testing like a MRI, anesthesia and sedation makes me as nervous today as it did the first time. Baby W is done with his MRI now--he woke up fighting and they had to bring me back to calm him. As soon as he was in my arms, he put his arms around my neck, head on my shoulder, and went right to sleep.

I'm so glad it's over.

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 :) 

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.

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 ;)

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 :( 

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!

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.

MRI is underway

The poor little bug was so mad at me this morning because I couldn't give her any breakfast. The water and apple juice she was allowed to have just didn't cut it :p

She fell asleep during the drive up to the hospital and when we got here she said she was too tired to walk and said she needed her "strohder":

She was feeling pretty anxious at being in a doctor's office setting but soon found her safe place--behind the chairs in her room where she could peek around the curtains and watch people in the hallways :p  Most of the window was frosted but there was a clear strip near the floor for her to peek through.

They had a hard time getting an IV in so they had to call in the IV team.  She played with her stickers and coloring book while we waited :)

It took the nurse from the IV team two tries to get it in but it's in, Iz got her medications, and now she's asleep.  They took her back and I have around a 45 minute wait here in the waiting room.  The Internet shall keep me distracted :p

Iz was not sure what to make of both her therapists being present at speech therapy :p  She kept taking turns glaring at one then the other and growling at them.  Then she'd get distracted by toys and would talk a bit, remember that there was an extra person in the room, stop to glare and growl, and then get distracted by playing again.  heh. 

When our session was over, I had to leave immediately because I have to go pick S up from school and we cut it pretty close!  But her therapists were going to talk over what they observed and start brainstorming some things we can do to help Iz through her anxiety so hopefully Monday (speech) and Tuesday (therapy) will bring a good game plan.  :)

Oh, wait.  We can't make therapy on Tuesday--Izzy's sedated MRI is Tuesday afternoon and there just isn't time for me to go back for the boys and then back up to the hospital to make therapy (the hospital is about an  hour away).  Well, we should still get some information from the speech therapist on Monday/Thursday and then will see her regular therapist next week :)

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. 

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

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?