Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?


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Strength and Creativity Needed

Well, our daughter is going to be the death of me.  She has, in the past week, tipped over two dressers.  She is fine; the first dresser is not.  We have been using the dressers/wardrobes to keep her out of the windows and away from the blinds/curtains.  I don’t know how much longer we can do that and I have NO idea what we’re going to do after they cease working.

The dressers are now anchored as securely as we could make them in a rental.  I think this will work for a while.  But what next?  I cannot think of any good solutions.  There are window locks that can be installed but are they secure enough for a very determined child?  If we put the window locks in and move the dressers, we will have to take the curtains down or she will rip them down.  And we wouldn’t be able to close the blinds because she will break them.  So then what?  I don’t like the idea of leaving her windows open to the public, not that there is much walking traffic behind our apartment.  We’re in a rental so we can’t tint the window or frost it or anything similar.  I just don’t know.  I’m trying to think ahead but it is frustrating and worrisome.  I can feel my anxiety rising.  Sigh.  Nobody told me just how creative I would have to be to foil my daughter….

On a brighter note, we picked up our son’s glasses today.  They are round and rather cute on him.  At least that is taken care of for a while.  I also met the school psychologist who will be working with him monthly to work on some issues he’s had at school.  She is young but very nice (I’ve noticed that the older I get, the younger others look!).  I think that Alex will be in good hands.  She asked a lot of good questions and we had a good talk.

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And summer begins

Well, things have been fairly quiet lately, which is surprising as the kids got out of school for the summer last Friday.  It looks like it will be a pretty quiet summer for the most part.  Alex and I will take one trip to Alabama to see my stepmother; I’m sure we’ll see some sights and do some swimming, as well as visit family.  That’s the big excitement this summer – no other trips likely.

Tomorrow, our dear Sophie has another EEG.  Sigh.  I know that it is a valuable test, but I hate this process.  She normally is asleep by 9 – I have to keep her awake until midnight.  Then we get to get her up at 5 am.  And she can’t eat anything for 12 hours prior to the EEG.  Fun, fun, fun – there’s nothing quite like a hungry, sleep-deprived child to really make the day fun and exciting.  Sigh.   Ah well.  It will be over before I know it, I know – and I know it could be worse.  LOL knowing that does not make this process better.

Sophie is going to summer camp this week and she LOVES it.  It is a camp for disabled children and adults, so she should be able to continue to go as long as we get applications in in a timely fashion.  They do arts, music, and other activities plus she gets to swim for a while at the end of the day, every day, so she really looks forward to this camp.  She goes three or four weeks every year.  Normally it is four, but I took too long getting my application in this year.

There is also summer school for Sophie.  This year, though, they shaved two weeks off of it.  I think someone, somewhere, missed the point of summer school for special needs children – at least some of the point.  One thing I liked about summer school was that it kept there from being a huge gap between one school year and the next.  Well, now there is going to be a big gap between school year, summer school, and school year.  In addition, she does better with a routine.  With a six-week summer school it was easier to keep her in a routine.  Well, there’s not much I can do about it; I am sure this is a result of budget issues within the school system.


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Seizures, seizures, go away

Sigh.  Five years we made it, five years without a seizure.  Today our daughter had a grand mal (tonic clonic, I think).  SO scary. And so depressing.  Sigh.  I can’t even really put how I feel into words.

After it stopped, we moved her to the couch and made her as comfortable as we could, but she got up and tried to walk to her room.  That was just completely heartbreaking – she could barely walk; her legs weren’t working properly.  I just about lost it at that point.  We got her to her room and she curled up on her bed with her favorite toys and went to sleep for about an hour.

What does this mean?  Are the seizures starting up again?  She was not quite herself for the past few days.  She had several instances where she suddenly started yelling, then crying like her heart was broken.  Were those seizures?  Were they seizure related?  I don’t know.  Some days I don’t know ANYTHING.  Or at least that is how it feels.

I’m going to call her neurologist tomorrow and I’m assuming that he will want to see her.  It has been a while.  It is possible her medicines need to be adjusted for weight change or something.  I guess we will see.  It is just devastating to have a seizure after all this time, even though I always knew it was possible.