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Sunday, April 27, 2014

Time to return to regular life.....

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

Friday, April 25, 2014

The Dynamic Duo!

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

Thursday, April 24, 2014

A trip to the pediatrician

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

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




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

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

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

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

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

Wednesday, April 23, 2014

Would you like to see my GIANT EYES?

So it was time (past due a little, actually--the offices we go to switched owners and our call to remind us to schedule got lost in the shuffle :p  Reading that the Rathke's cleft cyst sometimes can effect vision reminded to call and set up an appointment) for Iz to visit her ophthalmologist. 

Normally, Iz does great with these appointments and is incredibly compliant and follows directions and tries her best to do whatever the techs and doc ask her to do.  But, as you know, her anxiety, particularly in medical situations, has been through the roof so this particular appointment was challenging ;-)  Her doctor is so great though, and is very patient and Iz really does like her so she relaxed enough for a good exam. 

However, it was one of those visits where she needed her eyes dilated.  She remembered those drops from a year ago and oh, boy, was she MAD.  We got them in, though, and retreated to the dim waiting room to wait for the drops to properly dilate her pupils.  She gave me her sad panda face while we waited:

And then demanded I take a picture of her eye to send to her daddy.  She told me her eyes felt too pointy and she couldn't look at the books they had in the waiting room.
While we were in the waiting room, she got restless because everything she tried to do from looking at books to playing a game on my phone looked funny to her and she didn't like it.  So I was leaning her back down my legs so her head hung down and I tickled her.  She would sit back up and tell me again, so I'd lean her back and tickle her again.  The four year old sitting across from us asked his mom if Izzy was a vampire because her top teeth to the side are pointy LOL  It was adorable.  I promised him she wasn't a vampire and he settled back down.

Soon it was time to go back to the exam room.  She explored a little:
And played peekaboo:
And then finally was ready for her exam.  (Not really, she ended up needing me to come sit in the chair and then she sat in my lap and I helped her hold her head still :p  If I tried to let her do it on her own, she grabbed my hands and put them up to her head.  Silly girl).

So the prognosis is astigmatism is still there, near sightedness has gotten worse but she is just under the cutoff for her age group to get glasses.   So no glasses yet (which made her made--she really wants some and kept howling in the checkout line "I want glasses!  I want glasses!") but I think its almost guaranteed next year.  The rate at which her eyes have gotten worse did slow down, though, so we are going a year instead of six months until her next check up.



Tuesday, April 22, 2014

Iz has always been clumsy.  As a baby, we chalked it up to infant unsteadiness.  When she fell frequently learning to crawl, we chalked it up to weak arms.  As a walker, new balance.  And then came the age where we expected her to grow out of it....and she was still falling.  Sometimes its a trip, sometimes there is no reason. She can be standing or sitting still and fall over.  She would go to get on a chair and completely miss it and fall in front of it.  She would head for a doorway and walk into the frame or even the wall beside it.  She walks into furniture.

We started seeing an ophthalmologist.  She has astigmatism and is developing nearsightedness but it wasn't bad enough to give her glasses so young.  They tested her depth perception and it seemed to be okay.  She goes every six months to keep an eye on her eyesight and the occasional droopy eyelid.

She saw an orthopedist to see if there was a structural problem that could cause her toe walking and balance issues.  She was fine.

And now we see the neurologist, mostly for the speech regression but the falling and walking into things (and the fact that she often doesn't put her hands out to catch herself, she just falls into her face) are actually what prompted the EEG and MRI that discovered the abnormal brain waves and brain cyst.

Today we added the dentist into the mix.  With the boys, I started them at the dentist around 18 months but I couldn't really find anyone that would take Iz.  With her heart, we either heard, nope, won't see her at all, or were given an age range of 3-5 before she could be seen.  But recently I noticed her front two teeth, the ones she hits most often when she has a fall and doesn't catch herself with her hands, are discoloring and looking sort of greyish.  So I needed to find a dentist who would see her and finally, last week, one took her on!  We had to wait for cardiac clearance but they got her in today....and she refused to open her mouth :p

She was incredibly anxious and a little scared but the dentist was very kind and patient.  She didn't get a good look at Izzy's teeth but between what little she did see and what I described, she thinks one (or many) of Iz's falls damaged the nerves and they are dying or dead already.  We have a referral to a pediatric dentist that can do various types of sedation so they can relax her or knock her out and get a really good look at her teeth to confirm what is actually happening and get a treatment going.  If it is dead nerves, she would most likely need a baby root canal because she's too young to take a wait and see approach.  The dentist said with an older kid, they watch to make sure an infection doesn't develop and let the dead tooth come out on its own because the adult teeth are coming soon.  But Iz is too far away from adult teeth and baby teeth falling out too early can mess with the adult teeth coming in properly.  As much as I wish there was another explanation, I'm not sure I can sell that one to myself--I'm watching those tiny teeth get darker and darker and even before we spoke to the dentist, I thought those teeth were dying :(  Poor kid can't catch a break!

Hopefully we can get into the pediatric dentist soon to confirm and figure out our next step.

Sunday, April 20, 2014

A busy Easter day....

Iz is exhausted from her busy Easter day :p  Almost as soon as we got home tonight, she was asking to go to bed early :p  She's all tucked in and sound asleep!  Too bad the boys are still wide awake--I could do with an early bedtime myself :p  However, its spring break and so they know they have a later bedtime plus I kinda need to do some homework so they are playing Lego Harry Potter while I slog my way through spreadsheets.

However, I'm taking a short break to post some pictures :)

Last year, Iz seemed slightly confused at first at this egg hunting thing but once she saw what other kids were doing, she was all for it.  This year, she knew exactly what to do and took off running to fill her basket :)
B is FAST and zoomed around at top speed filling his basket. It was quickly overflowing and I'm pretty sure I spotted Iz picking up eggs that were falling out of his basket as he ran LOL
We also did some egg dyeing/decorating.  Iz and B were very prim and proper and careful with theirs but S liked the way the dye felt and got quite messy :p  His eggs were gorgeous, though, when he was all done--they looked like marble.
It has become tradition in our house that once the eggs are emptied and the candy sampled and the money counted, the empty eggs are scattered about again and they hunt for them all over again :p  Usually S is in charge of putting the eggs back out.  Eventually we move to just tossing them out into the grass, the kids gather, and we'll toss them again :p  Iz thought this was the best thing ever ;)

Happy Easter!

Saturday, April 19, 2014

Two years ago today, I handed my 7 month old to the surgical team and spent hours waiting and worrying as they stopped her heart to repair it. By this time at night, I was by her side in the PICU where she was sedated and a machine breathed for her. Today, we celebrated with a trip to the zoo and she abandoned her stroller at our first stop (always always always the seals and polar bears) and walked the entire time. She's a bundle of energy and sass and always and ever a fighter. Happy OHS anniversary, sweetheart 







Thursday, April 17, 2014

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

Sunday, April 13, 2014

A sunset walk

After a long, cold winter, we have been loving the warmth!  Of course, the upcoming week is supposed to drop down below freezing again :\  Spring will eventually be here for good, though, right?

Even with the warmth, most of the actual playgrounds have been a bit too muddy and wet for playing so we've been trying out different walking trails :)  The other night, we went to a favorite park after dinner and had a sunset walk :)  This park is fairly large with a play structure, a catch-and-release-pond, multiple sports fields, and walking trails.  We chose a path that went along the lake for a bit.
The path is made of small gravel and the kids thought the ruts from the park maintenance vehicles were awesome LOL  They walked in them, hopped back and forth over them and in general were just silly :p
About halfway around the lake, B had to stop and get the gravel out of his shoe ;)
He wanted to do it himself so Iz and I played peekaboo while we waited.
We walked past the lake down towards the end of the park.  There's a small private airport down there next to the park and the kids were hoping the plane we saw take off while we were over by the lake would be ready to land when we were right next to the airfield.  Alas, it was not and we turned back towards the lake without seeing any small planes land. However, we were right on time back at the lake for a gorgeous sunset!
And B needed to pose with his Farky :p
I'm pretty sure he would have stood there all night getting his picture taken :p

Saturday, April 12, 2014

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.

Tuesday, April 8, 2014

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

Sunday, April 6, 2014

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 :)

Wednesday, April 2, 2014

Research :p

At Izzy's therapy session last night, we were talking about the continuing anxiety she has when she gets around other people, including people she previously had no problems with.  We have random good days where she's over it quickly and talks and interacts but there are still plenty of days where we might not hear a word.  Her therapist arranged to come to our next speech therapy session on Thursday, which is fantastic.  I'm really hoping the therapist and SLP and work together to come up with strategies to help Iz feel more comfortable during speech (because it won't help if she's not participating!) and playgroup and other situations.  Her therapist has been connecting with other therapists and SLPs that she knows as well to find people who have helped kids through anxiety that affected their speech to get ideas of things to look for and try with Iz.  I'm all for collaboration!  What works for one may not work for another but at least it is a starting point :)