Monday, September 29, 2008

It has been a long time...

Yikes! I cannot believe that it has been 5.5 weeks since I last blogged. There is so much going on in my head it would be great to get it all out here and let my brain air out a bit. It is getting a bit cramped in there. :) (Figuratively in my case, not literally ;) )

I have been battling frustrations with Dr. Frim. At times I have the urge to smack him in the back of the head and ask him WTH! But since he plays with the kids brains, I thought better of that idea. We have an appt for November 13th. We will be there the same day and time as another friend of ours. I sort of feel bad for Frim since we BOTH want answers for our children and are not planning on leaving without them.

Lindsay goes for a Lumbar puncture tomorrow to check her pressure again. Almost 2 weeks ago when Lindsay came home from Brownies, Darren and I were looking through her papers and we notice that her neurocognitive issues were horrible. "Disturbing" was the phrase for Darren and my mom. *I* on the other hand did not realize until that moment how bad she had gotten. I see her every day. We emailed the Lord of U of C Neurosurgery and he agreed that she needed an LP to check her pressure and drain her again. If her pressure is high we are going to discuss whether she has a decompression or if we discuss "drainage options" (aka shunting). With shunting before decompressing there is a much bigger chance of causing the cerebellar tonsils to herniate. But we will discuss all avenues with Frim when/if the time arrives.

Fayeth has been waking up and crying in the middle of the night with head pain. I know she needs another MRI, but I am not ready to go there. I am going to speak with my ped and see what she says. I trust her and we will see what she says.

I am getting a copy of our MRI to send to Dr. McKinnon to see what he thinks for Gabe's head size. He has thought since February that we need to make Gabe's head larger. So we will see what he thinks based on Gabe's most recent MRI.

Onto a better note, because I refuse to be one of those people who wallows in self pity and who enjoys the attention "poor me" brings, Nutcracker is in FULL SWING. The children got wonderful parts. Gabe is a party boy and a soldier. The hopes is that Gabe will be able to do the part of a party boy since the youngest person in the scene is almost 10. He gets to partner with the almost 10 year old little girl. He was really nervous his first rehearsal and did okay. Not his normal cute ham it up self. It was funny. He walked into the rehearsal studio, walked back out with a panicked look on his face and said..."I go in there with THEM???" Yes buddy. Go on in there. The other moms who were waiting were trying to hold back their laughs, it was just that cute.

Lindsay is a soldier and is very happy not to be a bon bon again and Hannah is a gingerbread. Hannah at one point had 2 parts, a gingerbread and a mouse, however there was 1 child that auditioned and was not cast and Mrs. T asked Hannah if this little girl could have her mouse part. Hannah was crushed and Lindsay offered to give the little girl her part so that Hannah nor the little girl were not sad. I told her than she would have no part and she said if it made others happy she would sit out. I was really proud of her. However it did not come to that because Hanah came around and voluntarily gave up her mouse part.
Hannah in her costume. There is a headpiece and red felt cheeks.
My friend Brandi and I are still the co-backstage coordinators. It takes a huge amount of time, but i enjoy dealing with the parents and all the kids. At the very end of the show when Clara is telling her mom about her adventure and the curtain goes up and all that is left is the hazy screen and the "characters" are waving...I get goosebumps. Hell I have goosebumps now just thinking about it.

I have a daisy troop. I am currently up to 16 girls. I have 3 first graders and 13 kindy. From what I understand there are MORE girls who want to join. FUN! ;) Brandi brings Luci down here for meetings, long story but they also have a mean leader where she is from. So Brandi is one of my other co-leaders. Which is nice since if Lindsay needs surgery Brandi is there to help Elaine.

After much thought about what to do with Lindsay we finally made a decision. This year the 1st grade daisies were meeting at a time that Lindsay could not participate. There is very little love loss with the 1st grade leader. Since technically Lindsay is in 2nd grade I opted to put her with the 2nd grade brownies. She did not get to do the bridging ceremony, however she is very happy with the older girls and they are a better fit for her. In the daisy troop they made fun of her because she was homeschooled. One girl told her obviously she was too stupid to go to school that is why we homeschooled. * Rolls Eyes * It was not a nice experience for Lindsay. This other troop is very nice. 3 of the girls in Hannah's troop have sisters in Lindsay's troop. It is a wonderful and loving troop and they have taken Lindsay under their wing. I was concerned that her neurocog issues would cause her to be made fun of but the Leader spoke with her co-leaders and when Lindsay is having a bad day hey ensure that she is getting a little extra help.

Well, I must get moving. Time for a spelling test. We have done 1.5 hours of school in the time I have been curled up in bed with them. These are the days...