Random updates...

Last week at this time I was just finding out that Dylan needed to be admitted to the hospital.  I was remarkably calm which was probably because the doctor had just finished telling me that he was concerned that Dylan was at risk for breaking the bone all the way through.  Okay then, admit him.  Really a no-brainer there, right?

The week since his surgery has been rough.  The first few days were rough because he was in a lot of pain and not happy at all.  By Sunday/Monday, he was feeling better and it became a "game" of protecting him from himself.  Clearly the pain medications were working because he actually asked if he could jump on the trampoline...atleast he asked first, right?  

The last couple of days have been challenging since the stronger pain meds are gone and we're relying in Tylenol which works for the most part but I have a feeling tomorrow will be a whole new story when he goes back to school.  He's going to be up more than he has been in a week.  And he can't participate in PE or recess which I'm sure will not make him happy.  I talked to him a little about it this morning and his response was, "Not happy about that at all."  I hear ya buddy.  (Should be interesting since he has to actually GO to the gym but just watch.....oy!)  I'm planning on sending him all day but will make it clear that if his teachers thing it's too much, I will come get him.

We should be hearing in the next day or two what the "plan" is as far as making sure that this fracture isn't a sign of on underlying health issue.  Like I've said, it's in a extremely rare place.  Dylan has had some blood and urine tests done so we should know more soon.

Kira's having a GREAT year so far....really, really great year.  She gets to see her 2 favorite aides everyday which I know helps her and it definitely helps me feel better about things.  She also LOVES her special education teacher and so do I.  She seems to be falling into the classroom routine well.  She has two shortened days again this year, Wednesday and Friday, which works nice since Monday is early release.  She goes in the morning and I pick her up at 11:45.  She comes home and naps those days and still asks to go to bed by 7:30/7:45 every night.

Kira had an appointment at the end of August with the Neuro-Muscular Clinic in town.  It was an all day appointment and overwhelming but I left feeling good about how the appointment had gone.  It was REALLY informative and I feel like this clinic will be good to have an "in" with in the future.  Next week Kira is going to be getting some new ankle braces.  They will go up quite a bit higher but it's clear that she needs something with more support for several reasons (I'll spare you the long explanation of those!).  

Unfortunately, at the beginning of October, Kira will have another EMG done.  She's had 2 in the past but this time it will be done a little differently as they are testing for Congenital Myasthenia Syndrome.  Her neuro here is talking with the doctors at Mayo to ensure that this test is done correctly to test for CMS.  (And you can bet I will be taking my notes from Mayo with me that morning and asking for myself too).  Kira will have a "twilight" sedation for this test and as I'm sure you can imagine she will not be happy about it.  We will not be telling her about it until the morning of since we know that once she knows, she will not be able to stop thinking about it.  I don't blame her one bit.

We also learned at her neuro-muscular appointment that Kira's heart is beating with some extra beats.  It's showed up in the EKG so they sent her home on a 24 hour halter monitor.  I talked with the cardiologist yesterday who said that her recommendation at this point is to repeat the 24 hour halter monitor in 6-12 months.  She also wants to have some bloodwork done sometime in the next month...not sure when we will do that but it will have to get done, even with the screaming that will come along with it! :-/  Hopefully this not be a big deal.

And then there's Miss Eva!  She tried to convince me yesterday that she was "scared" to go to preschool but since she sprinted into the classroom the minute the door opened and didn't look back, I'm not buying it!  Out of all 3 kids, Eva is by far the most chatty about preschool.  I love it!  She gave me a run down of the day, came home with paint up to her shoulders and was smiling!  I think it was a great day!  She loves it and  that makes me very happy!!!