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Tuesday, January 27, 2015

A long day at the hospital

I spent a long day at the hospital today but this time it was for me!  So I was at the adult hospital next door to the children's hospital :p  I've been sick, too sick, and I went to the appointment hoping for some meds or something to help my symptoms.  Doc suspected I had more going on and even talked about admitting me (yikes) but decided to run some labs if I would wait for results so I did a lot of waiting between seeing various medical professionals and final verdict was my labs looked good enough I could go home with a few scripts but if I'm not improving within a few days, back I go for an admission.  So fingers crossed I get better :p  I don't have time for hospitalizations!

Wednesday, January 21, 2015

A day at the Children's Hospital

So today was Izzy's much anticipated hospital day!  She popped right out of bed, was super cooperative eating breakfast and getting dressed and putting her socks and shoes on because she couldn't wait to go :p  What a change from the old days when just walking into the place gave her an anxiety attack!  I think it helped that she has been seeing the ophthalmologist every six months for a while now so she knows that the only not fun part is the eye drops to dilate her eyes and she thinks the way things look when she's dilated are "funny" so she's willing to put up with the drops ;)

We packed her food last night and she helped me pack it into the "lunch purse" today and carried it about the house while everyone else got ready.  It had snowed so we decided to leave straight from dropping S off at school rather than coming home for a little while and it was a very good thing we did.  The roads were bad.  It took us extra long to get S to school but I figured once we got on the expressway, it would be better because they usually plow/salt the expressway first.

We get on the interstate and there we are in the fast lane, passing car after car after car in the right two lanes.  Speed demon, y' a whopping five miles per hour.  HA!  It took us so long to get to the hospital, I was sure they would cancel our appointment and make us reschedule (which I hoped not because we waited a month and a half to get this spot!).  But they were understanding and gracious and sympathetic and got us right back and the appointment started.

Izzy's eyes look great--everything is healthy, no signs of problems (other than the fact that she is nearsighted and has astigmatism).  She did get a script for her first pair of glasses, just to wear when she's trying to see something across a room (watching tv/movies, storytime at the library, etc) and he said it wasn't a big deal if she didn't want to wear them but since she has been complaining things far away are hard to see and wants to get right up on top of things to look at them, it couldn't hurt to let her try glasses and see if it helps.  So she picked out some frames and is very excited for them to be finished so she can take them home and show them off :)

After her appointment was done, we stopped at the information desk and got a pass to go through security to the cafeteria so she could eat her snacks from her "lunch purse".  She carried the pass and showed it to the security guard and was very very proud of herself :)  I was, too!  Once upon a time, she would have been much to anxious to have that interaction.  She loved sitting in the dining room and spent a lot of time waving at and saying hi to everyone dressed in scrubs.  She still has a lot of "white coat" anxiety and tends to shut down if a doctor is wearing a white coat (except for her pediatrician--she LOVES her and instantly is comfortable with her) but scrubs equals nurses to her and she loves nurses :)

Thankfully, the drive home was a little easier and instead of going 5-25 mph we mostly got to do around 55mph so it took much less time getting home :p

Tuesday, January 20, 2015

A trip to the dentist

With the boys, first dentist visits happened around eighteen months.  With Iz, though, I had so much trouble finding a dentist who would see her!  They hear "heart defect" and "open heart surgery" and they couldn't see her until she was five.  I wasn't too worried--until her front teeth started to discolor after several hard falls during some seizures.  I finally found a dentist a few months ago willing to see her.....and she was promptly fired as a patient after a very short first visit.  She was very anxious, would not sit in the chair, would not let them get a good look in her mouth.  Based on the quick look the dentist did get and my description of what happened and the timeline of the graying of her teeth, they advised I get her into a pediatric dentist who could possibly sedate her because she was probably going to need baby root canals to save the teeth to ensure her permanent teeth came in properly down the road.

Finding a pediatric dentist in my area that accepted our insurance was not easy.  But I finally found one and while we had to wait about a month to get an appointment, we went in today.  Iz was still anxious and not very cooperative but the dentist had several techs come in and between them and myself we held her arms and legs and head still so he could get a look.  She wasn't happy but she did get a very good exam and her teeth look great, even the damaged ones!  Much of the discoloration is actually now gone and they are returning to their normal color, they are not loose at all, there's no swelling in the gums above the teeth, and while he wants me to continue to keep a close eye on them, he believes she will be just fine.  Apparently you can bruise the tissue inside teeth--sometimes the blood that clots in there does kill off the tooth but if the circulation is good enough, it breaks up the clot and the discoloration goes away and the tooth is fine.  Looks like she just had some bruising and hopefully when we have her followup, the coloration on those teeth will be absolutely normal and that will be the end of it :p  Now that she is on a good dose of her seizure meds, she rarely has injury-inducing falls.  She falls, of course, she's only three, but when she used to fall due to seizures, she wouldn't put her hands out to break her fall and that's why she kept hitting her teeth.  Now, those hands come out and she sometimes gets a scrape or bump on her hands but that is way better than busting up her face :p

Tomorrow, we head up to the hospital for our new patient visit with the ophthalmologist (the one we've been seeing the past few years moved to California).  She is excited because she likes getting her eyes checked plus she packed up her snacks and things and can't wait to use the "lunch purse" we won from Mom on the Go's contest around Christmastime :p  S thought the lunch bag was a cool purse so they all call it the "lunch purse" now LOL 

Sunday, January 18, 2015

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 :\

Sunday, January 11, 2015

Long time no post!

Things have been very calm here :)  We've had a few little illnesses but nothing too major and I am feeling hopeful we will have our second winter with no hospitalizations ;)

Izzy's genetics results finally came back--they've identified a couple of mutations (two from me, one from her dad) that are linked to some her heart and neurological problems but there isn't enough information about those particular mutations to say if they are the cause.  We know they are involved in things in those areas but they don't know if those mutations might cause problems.  But at least we know what the mutations are and future research could prove useful.

My busy little B has joined the ranks of glass-wearers.  He is farsighted with a touch of astigmatism so he only needs to wear his glasses for reading.  He's so cute putting them on to look at books or play his games :)