Emily Update

So, I have been meaning to do an "Emily" update since we came back from her appointment at Children's last week. It was "good" appointment if any appointment at Children's can be construed such. Provided that all goes well, she does not have to go back for three months, Her medicine is staying the same(same kind, same dose). Everytime we go, it gets just alittle easier.

I mentioned her attention span problems at school(and sometimes even at home)and he gave me a form to fill out, as well as one for her teacher. The form is basically a "Does she do this? Does she do that? "type of questionnaire which is then calculated on some sort of a graph. It is the form that is used to determine whether or not a child has ADD/ADHD. Her neurologist did not feel that the medicine could be having that side effect but that it was more likely a result of her particular neuron disorder.

Speaking of...her MRI has been reviewed and re-reviewed by the best doctors in the field...and no one has ever seen her particular case before. Neuron Migration Disorders are not common in and of themselves...her case is so uncommon that the best of the best have never even seen such a thing. So, she will not be taking part in the study they had planned afterall. Ryun is being scheduled for an MRI to see if what he was told he had as a child (one part of his brain was not as developed as another is what he remembers being told) is the same as what Emily has. If that turns out to be true, both Emily and Ryun will be part of an intensive study trying to figure out exactly what the heck this "thing" is and obviously establishing a genetic connection.

I really, really hope that Ryun's MRI is normal. Please, please don't let this be a genetic thing, I can barely deal with one child having a serious medical problem. The thought that this could affect the other two as well...it's just unbearable.

This is all so surreal. I keep thinking that one day I will be able to deal with this whole thing in a better way. Outwardly, people have actually commented on how well I have been dealing with this...Emily too. When I think about though...God it just tears me up inside.

Scary

The parade went well...except for one rather major thing. When the parade ended, we were supposed to meet up with Emily and her troop back in the school cafeteria, where they were serving cocoa and snacks to the participants. Ryun left the cafe to see if the troop was on the way in. In the meantime, I saw her leaders and all of the girls come in...without Emily. I just assumed that Ryun had met them in the hall and took her to the bathroom or something (I was just a little concerned but not really) Ryun walked in a few minutes later with Emily. I walked up to him and said (half jokingly), "You gave me a heart attack...what did you have to take her to the bathroom or something?" He said no and told me that he found her, outside, near the street, standing with a bunch of strangers. "WHAT?" Apparently, Emily got off of the truck with everyone and some of the parents decided to pick their kids up there...and Emily was left behind. Needless to say, all kinds of bad things started running though my mind...what if she had wandered off looking for us? What of someone took her? What if god forbid she had a seizure? I just had "that feeling" in my stomach...you know the "Oh my God, something terrible could have potentially happened to my baby and what ever would I do" feeling.

Anwyay, I didn't think it was appropriate to discuss this with her leaders with Emily right there so I called when we got home. The leader really didn't have any explanation but she did apologize profusely and hoped that Emily would be coming back to Scouts. I am not going to lie...the thought of switching Emily's troop did cross my mind. I accepted the apology though...and she did sound like she was on the verge or tears(her leader I mean).

God was that scary though. Just knowing that she was out amongst strangers, completely separated from anyone she knew, with hundreds of people walking around...it was scarier than I can even begin to describe.

Thank God Emily had the sense to stay put. She did say that she was a little nervous but generally, she seems unscathed by the whole incident.

I do feel a little bit better talking to the leader and she will be going back. She loves it too much not to send her...and I do feel like the leaders were sincerely sorry.

The parade it self was nice...Katherine had fun collecting candy that was thrown from the float and Julia just watched the whole thing in awe. Emily said that she had fun, and that she saw a number of kids along the route that she knew from school.

I have a Christmas tree/house to decorate and since I don't want to be up until midnight doing it, I think I will go start.

Festivities

Thanksgiving/Katherine's birthday went very well. This was my first time hosting Thanksgiving. I wasn't too nervous really and I had Mom to help me so it was good.

Katherine had a nice day too. I think I may have won the award for "World's Best Mom" when I let her have a cupcake for breakfast. I do that every year for the kids, but each year it seems like a new thing to them. We light a candle and sing Happy Birthday first thing in the morning, and eat a cupcake for breakfast. The kids think it's great...and it's a great way to start the day.

Today we are going to the Middleboro Christmas Parade, which Emily will be taking part in. She is riding on the float with her Girl Scout Troop, dressing up as an elf. She was in it last year as well and she loved it. The parade was great last year so I am
sure it will be this year too.

When we get back, we are decorating the house for Christmas. I am looking forward to it, so are the kids...if they get to help that is. They are supposed to be cleaning their room(which isn't even that bad) and they are busy fooling around. I told them that they had to finish it if they wanted to help. I seriously doubt that they will but I guess I could be suprised.

Emily PT Conference

Last week was Emily's parent-teacher conference.

She is doing very well with her reading(no big surprise there...she loves to read) and is in the highest possible level for her age group.

She is doing okwith her math...moslty she just needs to pay a little more attention so that she doesn't make "silly" mistakes.

The teacher did however have a few concerns.

She talks about things that really have no relevance to what is going on(the teacher is doing a math lesson and Emily raises her hand and starts talking about what she did over the weekend). She sometimes forgets to raise her hand.

Apparently, she is having difficulty getting her work done on time. Her desk is very disorganized and she has a hard time finding things that the teacher asks the class to save and take out on another day.

Her teacher says that Emily is constantly trying to help others with their work. She said that this would be fine, except that Emily is helping others with theirs before she has even finished her own.

The other day she brought home about seven pages that she had not finished at school and had to bring home and do. Apparently, her teacher told her that she would lose recess on the following day if she did not finish them. She does give them a little time each day to "catch up" with things that they may still need to work on but Emily (on her own) decided that she would bring them home, thinking that the little amount of time that her teacher provides at school may not be enough.

Her teacher made it very clear that she believes that Emily has "what it takes" to finish her work , get organized etc. I agree completely.

Emily is so smart. She has the "brains" of a child much older than she is, which from a mother's perspective has it's good and bad points. Seriously, some of the observations she makes, the things she says...she just amazes me.

It also gives her a sort of "advantage". In a nutshell, you can't put anything by her. She notices everything, doesn't forget anything, and will hold you to whatever you say.

Some of these issues that came up during her parent-teacher conference have come up every year...mainly the "social" aspects(not raising her hand, irrelevant discussions etc.). Math has always been just a slight concern, reading has laways been a high point.

Everything else though, is new this year, at least as far as I remember.

Naturally, I wonder if it's the medicine or just the seizure disorder itself that could be causing some of these new issues.

Earlier this week, I sent a note in to her teacher asking her to compare notes with Emily's first grade teacher to see if she had the same impressions of Emily. If they agree, maybe Emily needs a little "extra help" to stay on track(motivational type things I am thinking, maybe a few gentle reminders). If they don't agree, and these concerns are in fact "new", I will follow up with her neurologist in a couple of weeks at her next appointment.

Overall, I am under the impression that the teacher thinks she can do this if she concentrates just a little harder, and pays just a little more attention to detail. I agree, she is more than capable.

I am anxious to hear back from her regarding the note. I sent it in on Wednesday so hopefully I should hear soon. It might take a day or two for the teachers to coordinate a meeting etc.

I hope that everything works out, whatever the results. There is something "different" about Emily since this whole seizure thing came to light. It isn't anything that I can put my finger on though. She's Just different.

Jeans

                                                                        Katherine is definitely her mother's daughter.

Me: "This is Julia's new outfit. Doesn't she look cute?"

Katherine: "Ohhhhh, this is her first time ever wearing jeans."