How Much Is Too Much/Too Little?

How much help do you provide your child when it comes to completing a homework assignment?  How do you handle it when, even after explaining the scenario, your child is so frustrated by the process that she is in hysterics saying she can't do it? These questions are not rhetorical so by all means, feel free to answer.

There really is no way to put this gently.  Katherine has more trouble putting a sentence together, forming a paragraph and summarizing a book/passage than I have ever seen.  It doesn't seem right to me that it is still so difficult more than halfway through her fifth grade year. This only comes out in her writing; her speaking and language is fine (though generally it is very simplistic). 

These problems are not new to Katherine.  In both first and second grade she received Title I services for reading/ ELA.  She made some decent gains and was dropped for third and fourth grade.  I still thought at that point that she needed extra reinforcement particularly with writing.  Toward the end of fourth grade, after many discussions with her teacher (who saw some of the same problems but attributed Katherine's struggles to more of an attention/motivation concern), I decided to request an evaluation.  The results indicated that she had pretty much average capabilities across the board.  I would have to look back, but I don't specifically remember her being given any kind of writing assignment as part of the testing.  There is no question in my mind that this would have indicated a marked weakness for her had such a test been administered.

A number of weeks after Katherine's most recent report card, I checked in with her teacher, explaining some of my serious concerns with her writing and asked her if she had made any progress since the report card came out.  She said she had some of the same concerns and suggested we meet.  At the meeting we both agreed that the problem was real and her teacher suggested that since her testing came back okay,  perhaps we should go the medical route and see if there was another possibility (read: ADHD).  After filling out parent and teacher surveys, we met with the doctor, who said, yes, based on our discussion and surveys it seems like she may have the ADHD: inattentive type.   She thought medication would be the best route and though I didn't jump right on that bandwagon with Emily,  by this time with Katherine, it just seemed like the right thing to do.  So here we are three or four weeks in to the medicine (which is supposed to be fast acting as in immediate) and nothing has changed.  She isn't on a high dose (10 mgs which could go as high as 30-40 mgs but the doctor said that is usually what they would prescribe a teen) and of course, the first medicine tried might not work.  Katherine was so frustrated and worked up about this specific writing assignment that she was hysterically crying and having serious stomach pains.  Seriously, I was half jokingly wondering in my own thoughts if the child needed an anti-anxiety medication as well.

I can't be their frontal lobe....my own has a problem functioning correctly for me never mind trying to do the work for someone else. So, in the instance of this assignment, I made her do half of it.  I could not see forcing her to finish it in the condition she was in.  The quality of her work would have suffered above and beyond the struggles she already has with it and besides that, I felt really bad for her.  Should fifth grade really be this stressful?  It's freaking fifth grade.  Admittedly, we should have started this assignment earlier on in the weekend.  Instead, we enjoyed a stress free, fun family weekend and I refuse to feel guilty about that.  I am going to send in a note to her teacher with the part of the assignment that is complete and let her know that the rest will be in on Tuesday.  Maybe this is a cop out.  I don't know and really, I don't care.

What I do know is that for Katherine's sanity and mine, we need to figure something out, and quickly.

All advice, constructive criticism, and thoughts are welcome and appreciated.

A Recent Status Update

Em and Julia were having a little spat. They were pretty much over it when shortly after, I had a discussion with Ryun about a Dr.'s appointment Emily has Tuesday. Out of nowhere, Julia, who may I remind you, is only 6 years old said, "Yeah Emily, well I hope they take your voice box out!" What?!?! It was seriously one of the funniest/most sarcastic/perfectly timed things she has ever said....and oh so "Ryun" of her.   After I stopped crying from laughing so hard, When I asked where she had learned about voice boxes, she replied in a very matter of fact tone, "The Little Mermaid."

Seriously, this girl never misses a beat!

I don't want to...

...start the year off on a bad note, but seriously?  I am all set with this family getting the stomach bug twice in two weeks time (that is assuming that Emily passes it on to the rest of us).  I was only half joking when I said on Twitter that I was considering wearing a mask to fend off the germs.  Besides Emily's illness, Katherine has a massive cold and Julia just got over croup.  I guess I should be thankful that this was all either right before or right after Christmas and not during.  That doesn't make it any less annoying that some of us are sick now, and some of use are just waiting for it to hit us (and hoping and praying that it does not).

So if you could all send some healthy vibes this way, it would be much appreciated!

*UPDATE* Katherine's cold...turned in pneumonia.  Lovely.  At least the doctor was thorough and listened to her chest when we went in with a complaint of an earache.  She's was prescribed a Z-pack so she will hopefully be on the mend soon.

And really universe, a stomach bug for the family, a relapse for Emily, croup for Julia, and now pneumonia for Katherine...I think we've paid our dues, thankyouverymuch.

Ring Ring Ring

I don't like to talk on the phone. Actually, I pretty much hate it. It is much worse for me from an anxiety perspective when I actually have to talk to someone on the phone that I don't know. Even when it is someone who I am completely comfortable with (who are far and few between) I still would rather talk in person or even better through some other form of communication (email, text).

Whoever invented caller id is my hero. When the phone rings and I can see who it is calling, I can make a decision about whether I want to talk. I have to be in the mood to talk and in the right frame of mind. I can almost guarantee that if someone is calling from a number I don't recognize or worse, from a blocked line, I won't answer. I am just not comfortable being put on the spot.

Another phone related issue...when someone calls and does not leave a message. Even more annoying than that...when someone calls repeatedly and doesn't leave a message. Obviously if you are calling me you have something to say. I have a voice mail so you can say it, so would you, pretty please?

So, to the person who has called multiple times today (at least I am guessing it is the same person but regardless) not only from a blocked line but also not leaving a message: Unblock your number and I may answer and for the love of God leave a message!

P.S. Yes, I know have a little stranger/social anxiety. Knowing is half the battle though right?

In the never ending quest...

...for self improvement, I did the following things today:

-joined a gym for the first time in my life. The last time I got regular exercise (except for spots here in there for a week or two at a time) was probably high school gym class. That was 17 years ago. It's pathetic and shameful to even admit that but if I am not 100% honest and upfront about this I'll never break through whatever it is that has been holding me back. Besides the obvious physical benefits of exercise, I am almost just as much looking forward to the mental benefits. There is no doubt that a little boost of self confidence and faith in myself, both of which I have always lacked, will be a good thing.

-took out of the cabinet the 31 (yes 31) recipe/cookbooks that I have and haven't used in God knows how long so I can page through them, pick out recipes that I will use and compile them in to one spot (perhaps a binder with dividers). I really need to put more effort and more variety in to what I cook around here. The fact that I cook 95% of what we eat (as opposed to eating out or ordering in) is good but I could certainly be healthier about it than I am.

I have no idea what has taken me so long but, over the past couple of days, I have come to a lot of conclusions. The biggest and most important one? I need to do a hell of a lot better job taking care of myself than I do. Yes I am only 35, but at the same, time...I am 35. This is only going to get harder the older I get. I also can't help but think about how fast time passes. Do I really want to look, and more importantly feel this way for the next 35 years? I can't keep doing this to myself...or to my kids. I have so much more to offer them, but besides that, I want to be a good example. There are some parts of my life in which I do set a good example. In the area of self care, good examples for the kids are lacking...severely. I want them to grow up being confident, independent women. It's partly up to me to show them how to do that.

All of this is certainly motivation. The real motivation though is that I know, deep in my core, that I was given this life to serve a greater purpose. I don't feel like I am living up to what I know is my fullest potential and that is both physically and mentally painful. If I don't push through this and push on, I will never get to experience whatever this greater calling is (and I just know there is one). Knowing is half the battle...now it is time for action.

So as the saying goes: Today is the first day of the rest of my life. I am done looking back. It's only forward motion from here.

Why...

...do overwhelming thoughts of what I need and want to do (with day to day things and life in general things)need to flood my head just before bed time? I am pretty sure that I will not be able to sleep now because my brain won't shut off.

Also? I really should keep a good old fashioned paper and pen style journal in addition to this one. There are just some things that aren't meant for public consumption.

One more thing? I should totally write a book. After I get over myself.

And that, is my rant for the night. Going to cue up the "sleepy time" play list on the ipod and attempt to sleep.

Jackhammer

I woke up this morning with a massive headache...complete with nausea and distorted vision. Somehow, I managed to get the kids off to school without dying in the process (why yes, I am super Mom), then took four ibuprofen and went back to bed. I woke up a couple of times because the phone rang but basically slept until noon. Upon waking, I immediately felt guilty thinking about how I had wasted half the day (yes I realize how ridiculous this is).

So, even though I could have stayed in bed for hours longer, I got up, ate something and attempted to tackle the to do list. This was met with little success (although if I had put, "clear the DVR out and watch hours of tv" I could have crossed that off). The headache lingered (though it was less severe) for most of the afternoon. As the day progressed I felt better and managed to cook a delicious dinner for the family (meatloaf, mashed potatoes and carrots...total comfort food for a blah, yucky day).

I am still not feeling quite right but markedly better in comparison. And yes, I am still annoyed by how much time was wasted while I slept the day away. Sometimes? I really need to chill the heck out when in comes to the to do list.

Today

I decided against going to the pool today. Assuming the weather peeps are right, there is a 60% chance of showers and storms this afternoon. It is not worth packing everything up, getting everyone dressed, sunscreened and ready, only to have it rain. If I am being honest, the whole prospect of going made me tired just thinking about it. I am still not feeling quite right anyway, so another day of chilling at home seems smart.

This sickness is weird, whatever it is. All of the symptoms mentioned in my last post are fleeting...here in some moments, gone the next, and not all together at once. I have no idea what is going on, but, since I don't feel like death, I am probably going to skip the doctors and just wait it out for a while.

So my new plans for the day involve updating the calendar, responding to phone calls and emails I have let pile up, working on some PTA things (including deciding which Summer Leadership Meetings I will be attending), and general office work. The kids are happily entertained with a giant canister of play dough and toys downstairs, which they used for upwards of 2 hours yesterday afternoon as well.

Ugh

-Voice in and out= check.

-Cough=check.

-Serious headache off and on=check.

-Unusually tired after food shopping and errands=check.

-Occasional nausea=check.

-Tightness in chest=check.

Ugh. Thinking that if I am not somewhat better by tomorrow a trip to the doctor may be in order. And if I am saying that, you know it must be bad.

June 29th...

...marked the 6 year anniversary of when Emily was diagnosed with Epilepsy. Below is the entry I wrote after her first seizure:

On Sunday afternoon/evening, Ryun cleared Emily's room and painted it to match their new furniture/bedding sets that we will be setting up soon. Because the paint was still wet( and the fumes still strong) we set Emily's bed up in Katherine's room for her to sleep in there. They were so excited to have a "slumber party"...it was so cute.

Twice during the night Emily came down to our room...once to go to the bathroom(there is one in the hallway upstairs I think she just wanted to come down and say hi) and once just because. When she asked if she could stay down with us, the first time I said, "No, go ahead back upstairs...Katherine might be sad if she wakes up and doesn't see you there for your slumber party." She was fine with that and went back up. A few hours later( around 5:00 am or so) she came back and asked if she could stay again. I said the same thing about Katherine being sad but at the end I said, "It's your choice though...you can stay if you want to."

Thank God she did.

When Emily came down the last time, Ryun was just getting up to leave for work. She jumped in to his spot in bed and started asking me all kinds of questions...What time is it? How many minutes until we get up? Do I start swimming lessons today? I answered her and finally said, "Ok Em, it is time to go to sleep."

At about 8:00(Katherine had come down about 1/2 hour earlier when she woke up) she and I were lying down in bed talking quietly when Emily made this noise that kind of sounded like she was clearing her throat, but sort of sounded like she was gurgling water too...hard to explain really. Katherine asked me what that noise was and I said, "that was just Em."

Seconds later, my bed started to shake. I immediately jumped out of bed and went to Emily was was shaking rather violently and, for all intents and purposes, unconscious. Her eyes were open but mostly rolling back in to her head and she was drooling. I rolled her onto her side thinking she might be going to vomit. I called her name(yelled it actually) a couple of times with no response and immediately called 911. I kept trying to call Emily and when the shaking finally subsided(seemed like forever but it really only lasted for maybe 1 to 2 minutes) she was just staring in to nothing. Her eyes were on me but it was like she was looking right through me. I kept calling her, saying her name asking who I was, and at the same time running around my bedroom getting myself and Katherine dressed, calling my mother to come take Katherine for me, and calling Ryun to tell him what was going on and to meet us at the hospital. At one point, just before the ambulance arrived, I managed to get her to mumble "mama" but it was incomprehensible and if I hadn't been asking her to say it, I wouldn't have even known what she was trying to convey.

The medic came in and by this time, she was starting to come back around a little, but still not quite back to reality. He gave her a quick once over in the bedroom(checking her pupils which were completely blown, having her stick her tongue out and checking to see if she wet herself, which she had not). The EMT came in with a stretcher and took her outside.

When we got outside, the police officer that came with them asked me a few questions(her name date of birth etc) and when I turned back around to the stretcher, Emily was fully awake and crying. I don't think I have ever seen her so scared in my life...and I can't explain in words how that made me feel. I of course went right over to her and told her she was okay and that we were going to go (together) in the ambulance to the doctor. My neighbor took Katherine for me until my mother arrived(about five minutes later or so). While in the ambulance, before we left, the medic started an iv(just in case she had another episode on the way...with the iv in place they could medicate her immediately). She was still pretty upset but I kept rubbing her head and telling her she was ok and that "Mama was right here and not going to go anywhere."

She started to calm down about 5 minutes into the ride and was definitely coming back to reality.

After she was settled and the iv was all set, the medic asked me a few questions(name, birthday, insurance etc) and she was trying to answer every question. I knew for sure when she started talking she was back to being my Emily.

And I was never, ever so thankful in my entire life.

When we got to the ER, they drew blood, took x-rays, gave her a CT, and a quick once over to see if she had any obvious signs of illness(rash, bug bite etc). When checking her ears, the doctor was beyond shocked that she had not been complaining of ear pain. In a nutshell, her ear had just about the worst infection the doctor had ever seen. She had a slight fever.

The blood work and CT came back fine but her chest X-ray showed a small case of pneumonia. She had been coughing for a few days with no other cold symptoms at all...not even a runny nose so the pneumonia diagnosis was rather shocking as well.

Because they still could not identify any real cause for her having a seizure, they wanted to consult with her pediatrician. He wasn't on, so they talked to another pediatrician in the practice, who recommended that she go home, be seen in the office tomorrow(which is now today) and at that time be scheduled for an outpatient EEG.

Before they had consulted with him, they started her on an iv with a medicine called "Rocephin" to help clear up the ear infection/pneumonia). About ten minutes after they started it, Emily started to complain that she was itchy. I lifted her shirt and the poor kid had hives all over her back and chest. She was allergic to the medication. The doctor/nurse came in and gave her Benedryl and a steroid to stop the reaction and it worked almost immediately. The hives were gone with in minutes. We of course had to stay around for awhile to make sure she was alright and they sent us home with a prescription for a steroid and told us to give her Benedryl every four hours.

We blew up the air mattress and set her up in our room to sleep.

It is now almost four o'clock in the morning and I can't sleep, despite being exhausted after our long day at the hospital. I crashed on the mattress with her and have been waking up every time she moves at all...even just the slightest movement.

I hope that her EEG comes back normal and that the seizure was just a "freak, one-time thing" for her sake of course, and I have to say for mine as well.

I can't explain the fear that was running through my veins when I watched her go through that. She had no idea who I was. She was not responding to me at all. She was shaking so violently that my entire bed was moving.

If I never, ever have to witness that again, I can honestly say I will die a happy woman.

Regular readers know that this was the beginning of what would turn out to be a long process that ended, after EEG's, EKG's, MRI's, blood work, and genetic testing with a diagnosis of a "Tuberous Sclerosis-like" condition. What the above entry does not mention was that at the time all of this was going on, I was just over 8 months pregnant with Julia, and maybe the only pregnant woman in the history of the world who prayed that the baby didn't come early, at least not until things had been figured out with Emily. I had no idea at the time that things really wouldn't ever be figured out. It's an anniversary no doubt, not exactly a happy one to recall but worth mentioning just the same.

Working...

...for the cable company was probably one of the most stressful jobs...ever. You'd be surprised at how angry and threatening people can get when there tv isn't working. Some people even got...stupid. I can remember a few people calling to report their tv was not working...when there was a wide spread power outage in their area (yes, really). I also remember a phone call or two in which I was actually threatened(one customer threatened to come throw his (EXPLICATIVE)cable box right threw the office window at me). So yes, I am questioning my sanity slightly when I am thinking of applying for a job, part time nights, working for, yup, the cable company.

The hours would be 5 nights a week (one of which would be a weekend night) from 5-9. This would mean making many sacrifices on my part. My time as a volunteer would have to be cut, my committee memberships and whatnot would have to be looked at, and Ryun and I would be ships passing in the night. It would leave Ryun in charge of "overseeing" dinner, homework and bed most nights. It would also mean my giving up "control" of these things which, really could be a whole other blog entry (about how sometimes I complain about doing it "all" but really the thought of someone else doing it makes my skin crawl because no one else will do it right and yeah, OCD much?). No matter that it is Ryun who is not only more than capable but should be taking an active roll in these things because hello, this is his family too.

Financially speaking, this makes total sense. Assuming Ryun gets the job I mentioned in the last entry, his income will be slashed in half, which undoubtedly will require a major overhaul of how we spend our money and how we live. Extra money coming in never hurts. It's perfect for the kids too (I can still be home with them during the summers and vacations, will still be able to volunteer during the day and can still bring Emily's entire life to the school when she forgets it at home (yeah, another blog entry).

I think I would have a good shot at getting the job considering my experience and the fact that there are still people working for the company that were there when I was. I'd be lying if I didn't mention how scary the idea of jumping back in to the "working out of the house" game is to me. I'd also be lying if I didn't acknowledge that there is some part of me that thinks this going back to work could actually be a good thing for me mentally. Being a stay at home Mom has really been a blessing. I know how fortunate I have been to not have to work out of the house. It has also been, to some degree, kind of lonely, especially now that the kids are all in school.

All in all, I think it makes sense to at least apply and see where it goes.

On The Job Front

Ryun is applying for a job that will be two things:

-Not in the same union he is in now (he will be going from the IUEC to the SEIU)
-About 1/2 the income he made as an Elevator Mechanic, which was, well, a lot.

Assuming he gets the job, he will not be making much more money than he is making on unemployment (he is getting the absolute max that unemployment allows right now). The obvious benefits are that unemployment will eventually run out and there is no chance that he will ever get a "raise" on unemployment. It also guarantees insurance coverage which will not be as good as the insurance with the IUEC but will be better than The Medical Security Plan or MASS HEALTH. Other benefits include free use of the MBTA, a job that is way less physically demanding(not that this is a concern really), personal/sick time (which he does not have now) and way less work related stress.

All in all it seems like a good move, even if it may mean pinching pennies a little.

It's called parenting...

...and if you are not going to do it, then you shouldn't have kids. And that folks, is what this really boils down to for me.

As a parent, I assumed certain responsibilities including providing adequate health care, education around food and exercise, limited time with the computer and video games and other things related to being an overall healthy person. This is one of the many responsibilities I have as a parent. Am I perfect? No. Have I been a little slack here and there with this type of thing? of course (see the part that says I am not perfect). Am I myself overweight? Yes. Does this mean that I do not provide the tools necessary for my kids to make better choices than I have? No.

There is no denying that in many respects, in many instances and on many different levels, parents have slacked off (just because I am not one of them doesn't mean that I deny their existence). There is also no denying that schools have had to pick up the slack. Here's my question...how much money is the school spending on being parents rather than on providing a sound education for the students which is actually their job? I would be remiss if I did not point out the obvious contradictions of less gym time, less recess time and crap food served in the cafeteria (which admittedly has improved but is still not up to par with what I would consider healthy). If the state is going to tell the school to measure and report on BMI then the state should also provide the funding to keep gym in the curriculum more than once a week or less and completely overhaul what is being served in the cafeteria. Cut recess time to spend more time in Math class or leave recess alone so the kids can get the exercise they need to maintain a healthy lifestyle? I think it's time the schools and the state decide on their priorities and perhaps try and line them up with the realities of what their jobs entail...which is not to report on whether my kid is overweight or not. (By no means am I a proponent of cutting recess for any reason; I am just pointing out the conflict and mixed messages that are being sent).

The report that is sent home says that BMI may not offer a complete picture of your child. If this is true, and again, if the schools must be involved, why aren't they doing other things to measure and report on this? Perhaps it is because they can't. A complete picture can not be taken without all of the facts. How does the school know how much physical activity my child gets outside of school, whether they eat whole grains, or if they eat their vegetables? A complete picture is simply not possible when school officials only see the kids for 6 odd hours a day. So I ask, why bother reporting on only one piece of what could be a very complicated puzzle?

I also find it hard to believe the reporting is having any positive effect on the obesity problem. Any good pediatrician has been reporting to parents on this type of thing for years and what good has it done? The obesity problem has only increased. As my wise mother pointed out on my Facebook post, you don't need a measurement to determine if you are overweight, all you need is a mirror. Does anyone actually think that the very parents this new initiative is trying to target are going to be jolted in to action as a result of these reports? Clearly, the reporting is meant to target those slacker parents who aren't doing their job. I highly doubt a report from the school is going to change their entire way of life.

This is just one of many examples in which the school and state have had to assume the responsibilities that have been neglected by some parents. It's difficult not to wonder how much their academic education has suffered because of all the time, money and effort that has had to be spent on this. Hey slacker parents, it's time to step up!

Today is a new day...

...and thank God for that. It amazes me the difference a day can make.

So the insurance thing kind or worked it self out...not in the best way it could of but better than nothing. We will have the "good" insurance plan from Ryun's union for at least the next month and maybe beyond. So yesterday? I made five dentist appointments (one for each member of the family), two eye doctor appointments (one for Emily and one for me) one appointment with my counselor, and two well check visits with the pediatrician (one for Emily and one for Katherine). All taking place during the month of June. Hello busy month!

Today is already shaping up to be a better day...I feel better, I have lunch plans with my sister and nephew and then I have Julia's kindergarten concert. I can't wait to hear her and her classmates sing! Tonight I will be at the school committee meeting on behalf of the MECC School Council, presenting the school improvement plan to the School Committee.

Yay for a busy but fun day!

So what if I...

...finally had a long overdue cry over all that has gone in the past few months regarding Ryun's job, insurance and whatever the hell else.

It felt good...really, really good.

And no, I have no idea what to make of the fact that I literally said out loud after dealing with frustration after frustration, phone call after aggravating phone call (and this is just in the past hour), HELP ME GOD PLEASE NOW...and well, he did.

It was all precipitated by more frustrating news on the insurance front...shocking I know. We had received a request for information from MASS Health which I was gathering and getting ready to send. Between the Medical Security Plan and MASS Health, the MASS Health benefits were really much better. Of course, the usual happened...an opportunity for something better was there and I had no choice but to take the worst. MASS Health will not cover you if you have any other insurance option, no matter that the co-pays are through the roof, my vision is getting progressively worse and it doesn't cover any vision services and Ryun has a tooth ache and there is no dental coverage...at all. The Medical Security Plan representative I spoke with said that I could purchase an individual dental plan through another company so I called. There is a waiting period on services beyond cleaning...so Ryun would have to wait 1 year to get his tooth filled or whatever it needs. Hello? In a year the tooth may have rotted right out of his mouth (not to mention the pain). Of course there is always the option to pay out of pocket but Ryun is unemployed and taking home less than half than he did when working. Same goes for the vision care. And to top it all off? I haven't seen my counselor in since February and she is not covered under the MSP. Whether or not I needed mental health counseling before there is no question of the benefit it could provide now and I can't pay for it because I have no coverage and my husband is unemployed! AHHHHHHH!

After the tears were through and after I asked God to help me (out of sheer frustration if I am being honest), I decided just for kicks to see if the !@#$%^& formerly known as Ryun's boss actually did what he had said he was going to do and paid up what he owes on the insurance plan we had. I am still waiting for the lightening to strike but in some sort of miracle, he followed through. I am just waiting for Ryun to confirm with the union but it looks like we have our old plan back for at least three months, which I am hoping can begin now, and not be backdated to the day he was laid off in March. Because if that happens? I might have to cry again.

Health Update: Emily

I have survived another trip in to the hell that is driving in Boston. Every trip to and from Children's reminds me of just how much of a "country" girl I am. Boston has too much of everything, first and foremost being people, followed closely by cars, buildings, traffic lights, and idiots that don't know the difference between a walk/don't walk signal.

Something else a visit to Children's always reminds me of is just how lucky we are. Sure, Emily has her medical troubles but, all told, her issues pale in comparison to what other children and parents are dealing with. It is depressing to see really but it sure helps put things in to perspective.

Emily has not had a seizure for coming up on six years and has not been medicated for three. Mostly, she is followed now for the treatment of ADHD/Executive Function Disorder and of course, just to make sure that she isn't having seizures. I have a feeling if, when she had her MRI and genetic testing a number of years ago, the results of both had been normal,we wouldn't have to continue seeing her neurologist and any medication for her other concerns could be handled through her primary care. Because she has two strikes against her so to speak (an abnormality in the frontal lobes of her brain and a genetic mutation in the TSC II gene), she continues to be seen by her neurologist.

Her appointment went well. We (Emily and I) discussed at length her troubles at school. I really felt that Emily should be very much involved with the discussion. Obviously she knows best what is going on and what she thinks is working/not working. I also feel like she is old enough to have a voice in some of the decisions being made about her. I explained to him that the medicine he had prescribed her seemed to help but that it was causing drastic mood swings(more so than what would be consider normal for an almost 13 year old girl anyway). This was confirmed when she stopped taking it and had dramatic improvements in her mood (thankfully it was the kind of medicine that she could take on a more as needed basis so it could be stopped and started without any trouble). He decided that another medicine may work better but said that she would need to have an EKG. This medicine has been known to effect the results of an EKG so it made sense to have a one first to make sure everything was ok to begin with. Given the diagnosis she also has of a "Tuberous Sclerosis-like" condition, an EKG was also warranted because TSC can cause heart problems due to tumor growth. We were able to head right down to cardiology when we were done which was nice. The results of the EKG came back today and were 100 % normal. If I am being honest here, I was slightly concerned that it wouldn't come back ok; not because she had any indication of heart problems but because of the fact that every other test she has had has not come back with good results (MRI's EKG's and genetic testing). It was a nice change of pace for something to come back ok.

When Emily was originally diagnosed with the TSC-like condition, both the geneticist and the head of the TSC Clinic at Childrens had never seen a case like Emily's. The genetic testing, though indicative of something like TSC was not definitive. Her MRI showed a "Neuron Migration Disorder" which was also something similar to what is seen on an MRI of a patient with TSC but not exact. Besides seizures and obvious problems with executive function and attention, she showed no other signs of TSC, such as developmental delay or tumor growth. At the time, the head of the TSC Clinic recommended that he see Emily in a few years to see if anything had changed with her specifically and also to see if he had come across anyone "like her" in the time that has passed. It has actually been more than a few years (5 to be exact) so we made the appointment to meet with him while we were there yesterday. As a side note, there was no surprise here when the director of the TS Clinic at one of the foremost children's hospitals in the world told me that Emily was one of a kind. I knew that already!

So, we have two appointments in October on two different days...one with the director of the TS Clinic and her regular checkup with her neurologist (sadly, we were not able to coordinate it all for the same day).

To end this on a less serious note, while talking with the doctor about the genetic mutation in her TSC II gene, Emily heard the word, "mutation" only and said, "Cool! I am a mutant!"

Honestly?

Why do I have to come up with the money saving ideas?

On the application I sent for both MASS Health and the Medical Security Plan, one of the questions asked what the primary language spoken in our home is. I answered English. So both plans send me all the information necessary, on separate sheets of paper, in both English and Spanish. This makes sense how?

I was also informed that I would be getting three separate mailings from both MASS Health and the Medical Security Plan; one saying we had been approved, another with the details of coverage and yet another with out identification cards enclosed. Uh hello? One big mailing with all things enclosed will save envelopes, postage, ink and paper.

And while I am on my soapbox here, can someone tell me why I have to get three copies of the same damn thing (such as the notice regarding the last day of school) sent home with my kids? Also, why do I need a copy of the school lunch calendar when it is published both online and in the paper? You can't tell me there is not a better way to do this (such as send all school wide notices home with the youngest kid or better yet, put everything that would not violate privacy rights online). It may not save a ton of money, but these small changes could save some and saving some, no matter how little, helps.

Wow...

...this health insurance stuff can be overwhelming.

At the end of last week we got notification from both MASS Health and The Medical Security Plan saying we had been approved for coverage. MASS Health was identified as being approved over the phone for at least the kids and for Ryun and I it was pending the receipt of additional documentation. A letter was sent to us on Thursday which will indicate what exact MASS Health plan we will be covered by.

In the meantime, I have been reviewing the coverage provided under the Medical Security Plan offered through unemployment. There are co-pays and co-insurance and all kinds of out of pocket costs to us for routine type things as well as things of an emergent nature. Admittedly, we had a rather fabulous insurance plan through the National Elevator Industry Health Benefit Plan. We had no co-pays and the coverage was extensive. In the 12 years we were covered under that plan I only ever had two problems (at first routine physicals for the kids were only covered every other year which they changed to every year after numerous complaints from members and there was a problem once with coverage for Emily's seizure medication). Other than those two issues, we were pretty spoiled. Having said that, it doesn't seem right that we may have to pay more out of pocket while Ryun is unemployed than we did when he was. In general, the people with less money shouldn't have to pay more for something than those with the most money. This is not to say that those who have more should pay more, but it should be fair. Either we all pay or we all don't pay. I have no idea what this says about my political leanings but yeah, that's how I feel.

This whole process has been overwhelming, stressful and tiring. While I am glad we have some sort of coverage in place, for a state (and now I guess country) that requires you to carry health insurance, they sure don't make it easy.

Dear Universe...

If you think constant reminders via the postal service, email and telephone regarding our current lack of insurance coverage will in any way benefit me, you are wrong. All it does is increase my stress level.

Thank you.

Is it wrong...

...that I am looking forward to getting the bills from Julia's medical visits this week so I can send them to Ryun's boss with a letter saying that this is what he has caused?  I plan on doing the same thing with the out of pocket costs we incurred for Katherine prescriptions due to her strep throat and ear infection diagnosis yesterday, as well as for her doctor's visit and physicals for her and Emily that I will be scheduling next week so they can go to Girl Scout camp.  I am not expecting that he will pay the bills but there is something about sending the bills to him that just seems like it will feel good.

We have applied for health insurance through both unemployment and MASS Health.  We got a letter from unemployment saying that they received the application, were processing it and that if approved the coverage would be backdated to the date we applied.  We have not heard from MASS Health yet.   In the meantime, I am going to get some pleasure sticking it to Ryun's boss...even if it more than likely won't any difference to him.