Psychiatrist day

The kids see their psychiatrist every couple of months to check in on how they are doing.  He manages all the ADHD meds and the anxiety meds and I love that he is so involved in their care.  Back in our last state, meds were only checked up on every 6-12 months unless I requested a review.  While doses rarely change, I like that Dr. C spends an hour or two with all of them every few months so he's gotten to know them and he talks things over with them, even if its yet another monologue on the joys of video games ( ;) ) so when issues do arise, he can actually  help us with it because he knows our family dynamic and what types of suggestions may work with us.

We talked a lot about the Busy Little B's OCD tendencies.  I don't say that lightly--when he was younger and going through testing for autism, OCD came up a lot.  They said he was too young for a diagnosis but that it was definitely something we'd need to watch and it would not be surprising if he got the diagnosis later on.  Some of his rigidity/obsessions is starting to interfere with daily life, especially at school, but it isn't causing things to come to a full stop.  At the moment we can work around these things and Dr C says some of the medications that help with OCD have side effects that we don't want to mess with unless we have to so we keep watching, keep doing therapy, keep working with the school to find ways to get his work done without disturbing his set-in-stone points.  At home I work with him on calm ways to work with his "rules" so he can solve the problem but if they try to challenge him on them at school, its a bit of a disaster.  I think they've decided to leave the working on those to me and his therapist because last conversation we had about it, they were just working his "rules" into their day so he would continue to work on his schoolwork instead of obsessing :p

Daredevil feats

The Super Kid had OT and one thing they've been doing lately is obstacle courses because it works on balance, coordination, core strength, motor planning, and executive functioning all at once.  They had the Super Kid set up his  own obstacle course this time and the OT was certain he couldn't do it because some of the jumps were really far and the moves to get through complicated.  But the Super Kid is rather reticent in public (thanks, anxiety) so she didn't realize just what a daredevil he can be :p  She knows now!  He did all the crazy moves and beat his course.

Emotional Regulation

I was really proud of Miss Iz yesterday.  She did such a great job handling emotions!  She's been dealing with pretty severe anxiety ever since her open heart surgery at seven months old and has been in and out of therapy since shortly before she turned two.  As she grows and matures, the manifestation of her anxiety changes.  Adding an anxiety med last year helped as well and we moved from her very long selective mutism stage into what I call the "Fight or Flight" stage.

One of the things we deal with is the fact that regular ordinary frustrations for her age can often kickstart the anxiety and then we go from 0 to 300 in a very short amount of time.  She does OT as well as meets with a therapist to help and she and I do a lot of work at home.  She had been making big improvements and then school just set her back to the point we pulled her out.  She's made great strides again and those fight or flight outbursts are getting further and further apart.  Yesterday morning W had OT and then we ran errands to finish off our grocery shopping for the weekend and next week.  She did awesome navigating the crowds (sometimes just having so many people around puts her on high alert and it takes very little to tip her over the edge), she handled being told "no" to things like a champ, she listened to instructions fairly well.  She needed some reminders here and there but nothing escalated and she chose appropriate ways to express the emotions she was having.  She used her words, did her breathing, when we needed to we simply moved together to a quieter part of the store, we talked things out.

We talk a lot about how we all have big emotions and that that is okay and normal and we are supposed to have big emotions.  But we have to choose how to handle those big emotions--we can't hurt others or ourselves or destroy things.  We talk a lot about making safe choices and that even grownups have to still keep working on things, too.  She may not always be in control enough to make the choices she needs to (which is why she's homeschooled now--the school was unwilling to step in when needed to keep her and others safe.  She knows that if she's out of control, I'll step in to keep her safe.  She doesn't like getting "tight hugs" when she's upset but she's a smart kid and when she's calm, she can tell you she needs them, even when she can't ask for them), but she's working on making them a habit so she doesn't have to think about them.  We practice when she's calm and she's applying her calm down strategies to other people in the house.  I was irritated with W this morning because he kept trying to climb on me and almost knocked my coffee over and I asked him to get down and go into the living room--Iz came over and starting rubbing my back in long firm strokes and told me that pressure input is really good for staying calm when you start to get mad LOL (Iz's response to W irritating her is usually screaming and crying and we are working on that because the loud wailing won't fix the problem--using  her words will be more effective because then even if W doesn't stop because he's two, I can hear what the problem is and come help.  I used my words like she is supposed to tell W to stop and go in the other room but she figured some pressure input wouldn't hurt).  She's a funny, sweet, thoughtful little girl :)

The Super Kid was finally feeling better yesterday.  He was home from school again because he hadn't hit the 24 hour mark but by late afternoon he was good to go so he went to OT at the rehab center.  He likes OT, likes the different therapists he works with but that anxiety gets to him so he's sometimes hesitant to try things in front of other people and is pretty stoic while there.  His temporary OT Miss S (the same Miss S that first worked with Iz) was teasing him last night that she almost saw him smile when they got him to try out the trapeze swing and he couldn't stop himself from grinning back at her :p  Now that he's tried out some of the swings and liked them, hopefully he'll be open to doing them again because its a great way to get that big motor movement he craves when he's sensory seeking.  I'd love to have a basement or something to set up swings and crash pads or something for my seekers!

The next step on our homeschooling journey

We have been rather isolated the last month or so as we recovered from the dramatic downturn in behavior and emotional/mental control Miss Iz took during the last months at school.  Her removal from that program has seen rapid progress and improvement but we have spent a lot of time at home and at therapy working through some of the anxiety and defiance and opposition that made a reappearance, especially when it was leading to the extreme aggression and flight we saw at school (and spilling over to home).  We haven't been complete hermits--we still went to the grocery store, appointments, etc, but once she started being able to interact with kids in the waiting room without outbursts, we tried kid gym, open swim, all leading up to the big one:  Playgroup!

Yesterday we went to our first one and she loved it!  She was anxious and nervous and she mostly kept to herself.  She did get upset at one point but she did exactly as she was supposed to--she retreated to a place away from other kids to calm down and then she and I talked through what was upsetting and the best ways to respond in the future (practicing what she should do is a big part of her strategy because once it becomes second nature, its easier to put into practice during a high anxiety or high conflict situation).  She did awesome!  She's looking forward to the next outing :)

Iz had OT yesterday--her OT is so pleased with how much better sessions are going since she switched to homeschooling.  It was hard for them to make any progress when she was struggling to have any type of control over her actions and emotions and self-regulation.  We still have moments of intense struggle but those moments are fewer and further between and she pulls herself together much quicker.  While the school can claim success with their program with many kids, Iz's rapid downward spiral was pretty clear to everyone but the school that the program was having the opposite effect for her.  She made better progress at her old school with the help of her outside therapies!  So we continue with the outside therapies and get her mental/emotional health and anxiety in a good place so school can become a possibility later :)

After OT, the Busy Little B had molds taken of his feet so he can be the third kid to get custom orthotics :p  He thought it was super cool--wait until the orthotics come in and he realizes they will be touching his feet--the excitement will vanish!

We are officially homeschooling

I filed the paperwork a few weeks ago.  Iz is sad she doesn't get to be with her teacher anymore but we just don't feel it is a safe environment for her (and her psychiatrist agrees.  He is not at all happy with how the school handled the situation and their "plan" going forward.  He wanted to get her moved to one of the therapeutic day schools but our local district won't consider it until she has multiple incidents over a long stretch of time.  I'm not willing to wait for many bad things to happen to get her moved).  But she has improved so much mentally and emotionally since she has starting staying home!  We worked so hard to get her into a school program and it is so disappointing it has ended this way.  But I have my girl back--sure, she still has moments of anxiety and struggle but its so much better than the last few months as her mental and emotional health nose dived.

She is doing awesome with schoolwork.  She loves to do "school" and we signed up for an online program the Super Kid used to use to practice his math skills on.  Iz does math and language arts through this website and she is going through the modules so quick :p  She's in kindergarten but some of her math skills are in the third grade level.  She says she likes that the math at home is harder than school because its more fun to do.  She is impatiently waiting for me to get off the computer so she can do school :p

At the moment, we are being very relaxed because its winter break and the boys are all home but once they go back to school, Iz and I will make school more structured.  There's a local homeschool group that does field trips and playdates for socialization so we are watching the calendar for things age appropriate for her--she is looking forward to making new friends who do school at home like her ;)

2 year cardio checkup

Iz had her biannual cardiology workup this morning.  She had an EKG and Echocardiogram and then we visited with her cardiologist.

She has no changes to her treatment plan and no restrictions, which is fantastic.  We like hearing that things are fairly stable.  We like hearing that we don't need to add in any medications or monitoring.  We like hearing that she can stay on her every two years schedule.

But I'd be lying if I said this visit hasn't left me with some pretty severe anxiety.  Yes, she's doing well.   Yes, she gets to continue living her life as she has been these last few years.  Yes, she's clear to keep on keeping on.

But for the first time since she recovered from surgery, for the first time in over five years, for the first time since she left the hospital, her heart is worse than it was the last visit.  The changes are minor, so minor that her cardiologist isn't worried, so minor that she doesn't need to come back early for monitoring, so minor that she doesn't need to do anything differently,  but it is still a step in the wrong direction.  It is still an undesirable trend.  It is still not as good as last time.

Her echo was great.  Her EKG is showing some issues with the electrical system.  We got a list of symptoms to watch for--if we see any of them, we go back for a checkup.  We got a reminder of the importance of her scheduled checkups.  More than one reminder--Dr B may have said its not really a big deal right now but he repeated four times throughout the visit that we MUST keep her next appointment to get a new EKG and checkup.  Which, of course I was going to do anyway.  I keep a reminder in my phone about setting up the new appointment when the time comes (Oct 2019 will remind me to schedule the next November appointment).

So I keep reminding myself it was a good visit.  Don't borrow trouble.  And in two years, hope things have swung back to the "getting better" side of things.

Why couldn't we have to day off?

You would think after all the sickness and all our cancellations of school and therapies, I'd be rested and all but nope, I just wanted to go back to bed and call it a day--we may have been home, but it was not restful for me :p  But, alas, Miss Iz had a first-thing-in-the-morning appointment with her therapist so off we went as soon as S was on the bus to see Miss J.  Since Iz started her latest anxiety medications, sessions with Miss J are so much more helpful and productive because calming down the anxiety seems to have given Iz the ability to verbalize what is going on in her head so they can actually work on strategies to help her get and stay calm and language to use to get other's to understand how she's feeling.  She even checked herself in--she hasn't spoken to the front desk staff in probably a year but she marched right up, told them her name and who she was there to see, and then marched herself back to the waiting area :)  Now if only we could figure out how to nip the sudden emergence of oppositional defiance in the bud.....

Week One of April, PT update

W was just not in the mood today--he ran to greet Miss C and even called out play! and ball! when he saw her but then just shut down and would not go near her and clung to my legs.  Sometimes he gets a little anxious and is clingy and then relaxes and starts to participate but he was just not having it today.  After multiple failed attempts to get him off of me and out to play, I realized the problem--Miss C was wearing her glasses!  W has never seen her in glasses, always contacts.  She took her glasses off and he runs over to her almost immediately, points at her and shouts "kiss!" (his version of her name).  HA! We had a chuckle over it and she was able to slip her glasses back on and they ran through some exercises and tasks.  He still wasn't the most cooperative but at least he would go near her again :p

In the afternoon it was time for Miss Iz to have her physical therapy.  She had a really great session--she is really focusing and listening and doing her best to follow instructions.  Her PT was so pleased with how quickly she is picking things up :)

We stopped at Panera Bread afterwards (its free bagel month for us!) to celebrate a good session for Miss Iz.  She split her bagel with her baby brother and talked up a storm the whole time we were there ;)

Does it still count as homeschooling?

Miss Iz spends so much of her preschool day trapped in her anxieties that she hasn't really been getting much out of it academically.  I mean, she's not missing out on everything, she has learned lots of songs and some of her letters and numbers but the planned academics versus what she is retaining are not matching up.  We picked up a kindergarten curriculum book a while back and a new big box of crayons and she was so excited about it!  We keep them locked in the pantry so no one can take her stuff :p  She likes that she is doing schoolwork a year ahead of all her classmates.

She goes to preschool in the morning, I pick her up, we come home and have lunch, and then she does her worksheets.  Sometimes we sit together, sometimes I do some cleaning in the kitchen so I can help her if she needs me to (she very rarely does).  Right now it is easy stuff, colors and shapes, practicing fine motor skills like tracing, drawing, and cutting, a few words to learn, some counting.  Its starting to get a little more complicated so the number of sheets she does in one day is dwindling but she still thinks it is so much fun.

There are days we don't get to do worksheets because of appointments or errands but we still get some schooling in.  On appointment days she gets to play on a tablet and she almost always choosing the learning apps.  She will practice tracing letters, adding, sight words, math games.  She has a couple of "just for fun" apps but rarely plays them.

Other days she runs errands with me.  The other day we were at the grocery store and she wanted to buy dessert.  She found some whole fruit frozen bars and pointed out how healthy they would be (and she was right--a mix of pureed fruits frozen on a stick).  I asked her how many came in the box and she very seriously examined it until she found the number and was able to tell me what it was (4).  I ask her if it will be enough so she counts out everyone who will eat one (me, you, S, B, one, two, three, four).  What about W? I ask.  She says the bars are too big for him and that I usually let him have a bite or two of mine so we don't need to buy a second box because we would have too many. My boys would have tried to convince me to get two boxes so W could have one and they could have two LOL  She pays attention to how I grocery shop and knew I would not have chosen to buy two boxes so W could have a bar way too big for him :p 

Baby W's First Surgery

Yesterday was the Big Day.  Baby W and I got up really early and headed over to the Surgical Tower for a 7am checkin.  He was a little sleepy and slightly grumpy that I didn't feed him before we left but he decided we were having an adventure and was pretty happy to go for a drive and then take a walk in the dark across the parking lot with me :p  He played shy peekaboo with the other people checking in and was happy to walk with the nurse escorting us through the hospital.  And, then, we got on the elevator.

Normally elevators are fun for W but this one was filled with strangers and he completely freaked out.  He's coming into the stranger anxiety phase of toddlerhood and while strangers in a big open room are okay, crammed into an elevator apparently is not :\  That set the tone for the rest of our check in and he fought every step of the way--weight, height, temp, heart check, all of it.  He even fought changing into his tiny set of scrubs.  When he finally started to settle, he held onto me tight and gave the Sad Face to everyone stopping by:

After a while of it just being me and him in our little room, he got up the courage to explore:

Of course he was drawn to the giant glass door :p  He stood there watching everyone in the hall and waving at the other kids he could see.

And then he saw some grownups coming and he ran for it!

Turned out to be the anesthesia team arriving to take him back to the OR.  They brought a little red wagon for him to ride in but he wasn't having it so one of the anesthesiologists sat in a wheel chair and cuddled him.  He hugged her tight but still cried his way back to the OR.  Poor little bug.

Ear tubes took less then ten minutes to go in and then he went to recovery to wake up.  Dr. M said they went in quick and easy and they suctioned out all the fluid still trapped in there. He has some ear drops to use for the next five days and then whenever he gets sick enough to get ear discharge (from fluid draining) but other than that no restrictions.

He came back from recovery shortly after and was sleepy and super clingy but when the nurse brought him milk he downed all eight ounces in just a few minutes and then ate a (dry) bowl of cheerios.  Dad arrived (he did school drop off) right as we were getting ready to be discharged :p  W spent the rest of his day slightly wobbly and with a wicked case of Mr. Crankypants but otherwise was completely normal  :)

Our second set of NMES is over!

Last week we finished our second round of NMES therapies!  Three times a week, forty-five minutes a session, for a total of 24 sessions.  That's a lot of driving and a big chunk of time out of every week that we now get back :)

Baby W was much more cooperative this time--he still dislikes having the electrodes on his neck but he didn't fight them as much and almost all his sessions went the full amount of time.  I think it helped that they got better food this time :p  He had more things that were like he gets at home (fresh fruit, cheese, meat, etc) instead of all the snack-type processed foods he likes in small quantities while he waits for the "real" food to get done ;)

Iz did better this time, too--she really struggled to make it through his therapies the first time around and some pretty severe behavior problems cropped up.  This set, though, she still struggled a little but she was calmer about it and never reached the point where they had to kick her out.  And our last few sessions have been really really good--she has been calm and focused and occupied herself fairly well.  I think that is in large part due to her officially starting to see the boys' psychiatrist.  She had a sudden and severe escalation in anxiety that was manifesting as extreme aggression.  When the Developmental Pediatrician fought to get her in preschool, he hoped it would help temper her anxiety but also said it was possible it would not get better and we would need to look at medications to help her function.  The psychiatrist (who knows her pretty well as he spends a good chunk of time with her every few months when she goes to her brothers' appointments with them) has been keeping track of her as well and he said its very clear to him that she has ADHD like her brothers (my, did we ever hit the genetic lottery in this family.....) as well as the anxiety.  She started a low dose of Focalin and wow, what a difference.  She sat down with a book and spent a good half an hour going over the words with me and memorizing them and identifying the words and letters she could remember.  Before, she couldn't even sit still to listen to a story.  I remember when S started ADHD meds--it actually helped lower his anxiety levels because he wasn't so nervous about doing well in school.  Be nice if that was true for Iz, too!  Right now, she spends half  her day at school (and she's only there for half a day) trapped in her own  head, unable to get past the anxiousness.  She LOVES school but its so so hard for her right now--I'd be so happy if she could actually enjoy it and get something out of it.  She's a smart kid (above average when tested for intelligence) but her abilities are low because she's not able to fully participate. 

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 :) 

Update!

**At Baby W's most recent GI appointment, he was able to lower his reflux meds and he's all the way up to the 6th percentile on the growth chart :)  He outgrew his newborn clothes but can still wear 0-3 months--its funny seeing a Timehop picture pop up for last year in the same outfit he's wearing that day :p

**Iz has finally started preschool.  She was so excited the first day until we walked in the door of the school.  Then she was a bundle of anxiety and fear but the teacher held her hand and coaxed her back to the classroom and the rest of the week went rather smoothly.  She says it is fun and has even learned a few kids' names

**My busy little B has done so well transitioning back into the school routine that they are ready to start his transition into a regular classroom again.  Like last year, he will attend for an hour in the morning at the local school and then return to his program for the rest of the day.

Developmental Pediatrician

Iz met with the developmental pediatrician for the first time.  He says her intelligence testing shows she's one smart little girl but her current abilities are way low and he thinks it all comes down to the anxiety she developed after surgery.  He asked permission to talk to the school and try to get them to make a medical exemption to bump her up on the wait list and get a spot for preschool and see if regular classroom experience can help her get past the anxiety (unlike her EI group where she made not a sound for over two years....) and if she still can't participate, he's recommending we try a very low level anxiety med.  He's in agreement with the neuropsych that its selective mutism but while therapy alone has helped improve things, its not enough.  He talked about maybe getting her into some other services as well--currently she's in OT to work on motor skills and sensory issues and she meets with a therapist every few weeks.  He mentioned maybe some PT for the low muscle tone and maybe speech.  Guess we'll see what happens?

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

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'all........at 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

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 

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 :\