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Sunday, April 19, 2015

Three years ago today......

At this time exactly three years ago, I was sitting by my daughter's side in the PICU watching her chest rise and fall, hearing the whoosh of the ventilator that breathed for her, watching the various monitors that told me her vital signs, seeing the steady drip drip drip of many medications feeding into her lines.  It had been a long and emotional day and we had been quietly sitting together for a couple hours at this point.  Early that morning I had handed her over to a surgical team, they stopped her heart, they repaired her heart, and they restarted that heart.  She had some rough moments that day--when they tried to bring her off bypass, she had heartblock and came back to me with pacer wires embedded in her chest and every so often the alarms would blare, telling us her heart rate had either dropped very low or soared very high.  But she was there, she was alive, and I waited.

Today, three years later, I sit beside her as she draws her pictures on scrap paper.  She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper.  She loves ponies and transformers, cars and twirly skirts.  She wants to dance her way everywhere and hates to take a nap in case she misses anything.  She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball.  She is stubborn and sweet and energetic and just full of awesome.

Happy surgeversary, my love.

Thursday, April 2, 2015

Hey, want another diagnosis?

Yesterday Iz had her results meeting for her neuropsych evaluations and we now officially have the selective mutism diagnosis her last therapist and speech therapist were discussing.  So looks like we are heading back to therapy to help her with the anxiety and the resulting behavior issues.  I was not convinced she was ready to be set free when she was discharged last year so I don't mind going back.  She seems to like the boys' therapist so maybe we'll get lucky and she'll be the one they give Iz's file to :p

Thursday, March 26, 2015

Poor Kiddo

Poor Iz, she's just been having a rough month that is turning into a rough two months!  One of the highlights of her week is her Thursday morning early intervention playgroup.  She loves going, even if she doesn't like interacting with the other kids (she's getting better, though.  Last year she didn't make a sound, this year she's been talking to me and recently talking a little to some of the other adults.  And instead of leaving the station immediately when another kid approaches, she will stay some of the time and play near another kid.  No interacting, though, if they try, she goes :p).  Beginning of March, she was too sick to go.  The next week there was no group.  Then following week she was sick again and couldn't go.  She was overjoyed to go today!  And then the next two weeks, no group because of Easter and spring break.  She is going to be so mad at me the next two weeks for not taking her :p

Wednesday, March 25, 2015

Growth Stats

Miz Iz had her height and weight done today :)  39.7 inches and 33.4 pounds. 

Tuesday, March 24, 2015

When the Busy Little B has homework, he's so excited and wants to do it right away and is so pleased with himself and can't wait to show it off.  When S has homework, he spends all his time trying to get out of it.  If he put even half the amount of effort into doing it that he puts into trying NOT to do it, he'd have a whole lot more time to enjoy himself instead of the hours long battle to get fifteen minutes of work done........

Wednesday, March 18, 2015

Another day at the neuropsych's office

Today it was Iz's turn to do evaluations--the geneticist had attempted to refer her multiple times during the genetic testing process but oddly enough, the NP department at the Children's Hospital never responded.  The private office that did the boys evals (and now therapy) said sometimes the hospital refers younger kids to them so if I wanted, they could do the evals.  So we had our intake a few weeks ago and went in today for the actual eval.

Iz really liked her evaluator :)  She even talked to her!  Answered questions! Played the games!  It was great :p  You never know what you're going to get with Iz and I'm just so glad she wasn't hiding and refusing to talk.  Results meeting in two weeks.

Let's celebrate!

Today was S's IEP meeting and this year we did a full evaluation because I just wouldn't leave them alone about it :p  Back when he had his first eval three years ago, the school psychologist ruled out learning disabilities.  One of his private therapists did some evaluations with him that showed him with a probable learning disability and the therapist also had some questions about the evals the school psych did since the results did not seem consistent with no learning disabilities.  The therapist recommended we try to get another set of academic evaluations through the school but they were not very willing to do it and stated that he was already receiving the top level of services so an LD diagnosis wouldn't change that.  That particular year, there was a new school psychologist and she kept saying she'd reviewed the previous psych's testing and it was very thorough blah blah blah.

Well, I don't give up easily and we had yet another private evaluation with the neuropsychologist which showed, wait for it, learning disabilities.  So I brought yet another set of results to them this year and hey, whattya know, yet another new school psychologist this year.  However, he listened, took my concerns seriously, did full and thorough evaluations, and now S has an official school diagnosis of multiple learning disabilities and his services at school are increasing to help him develop learning strategies and skills.  He tests extremely high in intelligence so he has the capability, he just has problems getting his abilities there because he's just not processing the new material very well.


I do find it so very sad, though, that getting a struggling student help is such a hard and long battle that when you finally get the confirmation of a learning disability, you want to celebrate instead of be sad about it.  I hate that this is one more hurdle he has in life, that it is another struggle he'll have, but at the same time, I'm so very happy that it is now recognized and it won't be just me trying to help him via trial and error--he'll have the professionally trained special education professionals working with him on all of his LD areas instead of just the reading help he's been getting.  He's already in fourth grade and has lost several years he could have been receiving extra services--I just hope we have enough time to get him caught up before middle school when things get a whole lot harder :/

Saturday, March 7, 2015

The worst of it has passed.....

The stomach portion of this virus seems to have passed and that improves things quite a bit :p  However, we are still dealing with some fevers and sniffles and intermittent tummy aches so there is still plenty of misery to go around.  At least its the weekend so they have time to recover :) 

Thursday, March 5, 2015

The stomach virus that is making its way through the local schools has hit us.  NOT FUN.  All three kids, one after the other.  The Busy Little B was the first to fall and he went back to school today--made him happy :p  The other two got sick yesterday within hours of each other and so we have a few days left with them, I think.  At the moment, Iz has a burst of energy and is running around singing nonsense at the top of her lungs.  Earlier, she was curled up in a miserable little ball dozing.  Just never know what you're going to get :p

Wednesday, February 18, 2015

Nothing to see here.......

Hello!  Things have been pretty quiet here but I thought I should stop by and say howdy so y'all know we are still kicking ;)  We are all going a little stir crazy between all the snow and the deep deep cold that has us trapped inside and we are looking forward to spring!  We need to find some sort of cheap indoor thing to do to get out--well, besides walking around Walmart LOL  The snow by itself would be great--good for playing in--but the extreme cold means no going outside because we freeze just going out to the car to go to school :p

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 :)