What I haven’t shared lately….

For some reason, I have been doing tons of things at home and dealing with lots of issues, of which I haven’t shared with you.

The first being is that I have come to the realization Trinity needs some testing to determine if she has a learning disability.   School life shouldn’t be this hard for someone who puts in so much effort.  When you talk to Trinity you would assume she was an “A”, “B” student, yet she struggles to maintain a high C average at this point.  Her grades and her intellect don’t match, which I know is a super common sign for a child with a learning disability.

So I took it upon myself to call the school district and get the process started.  If you have a child in private school and need or want to have them tested you have to enroll them in their home public school.  This requires an in person address verification, immunization records, birth certificate, online application, application verification, letter requesting testing and once you complete all this, of which I have done,  they give you a packet to return and they have 30 days to respond to your request.  Tomorrow I am turning in the completed packet, so hopefully the worst of it is behind me.  Yeah, right!

Because I have been really worried about Trinity’s academic future I have been looking outside the box for options which she might like better.  I looked into the Orange County School of the Arts (OCSA) and we went to an orientation day on Saturday.  We both fell in love with the school.  It was incredible and a dream world for artistic, talented kids who are serious about their art.  We loved the visual arts conservatory for Trinity but getting into the school has become rather impossible.  They start in 7th grade and that is your best shot at getting in but Trinity won’t consider attending until 9th grade because she wants to finish at St. Joachim’s which I totally understand and support.

OCSA has less than a 10% acceptance rate at this point.  They have 20 open spots for 7th graders in the Visual Arts conservatory but only 2 spots for 9th graders.  UGH, not good odds, 2 spots?  So, we will wait and apply for 9th grade and I will research some other options.  I believe in my daughters artist ability but I’m not crazy enough to believe she will get one of the spots, so I need a back up plan.

The second huge thing I have been dealing with is a rather serious issue with one of my best friends.  She is going through something really hard and scary and I need to be there for her to help navigate all the decisions she needs to make.  This has consumed a large portion of my daily thoughts and worries.

As for Tiara, I have reduced her Depakote seizure medication over the past few months from 8 pills daily  (4 in am/ 4 in pm) to 6 pills.  This medication is the primary reason she eats so much and is also very sedating.  Her neuro-psychiatrist and I have started to wonder if she is over medicated which is causing the excessive weight and contributing to her behavior problems.  As a result, in the past 2 months I have taken her off Abilify and reduced the Depakote and she has been much more awake.  She has been napping less but also hasn’t been sleeping as well at night, which sucks for me.  Her food intake has decreased but I haven’t seen any big weight loss, but no weight gain, which is a plus.

The next medication I am going to tackle is the Clorazapate, which is also super sedating.  She is currently on 5 anti-epileptic medications, all of which are at extremely high doses.  After her brain surgery which was almost 3 years ago, she was having so many seizures we just had to keep piling on the medications.  She was so unstable for so long her neurologist and I couldn’t ever consider reducing medication.  For some reason it feels like her brain has healed from all the trauma and I know in my heart she is on too much medication at this point.  The 35 pills a day she takes to keep the seizures at a minimum has become excessive.  This may seem silly but a Mother of a sick child senses this stuff and needs to always follow her intuition, which I am doing.

On the home front, we are still working on a modification and I am in the process of painting everything again.  The most difficult part about the modification is keeping track of my paperwork.  Tiara has decided my desk is her desk and I can hardly find a safe spot to hide important papers.  If I don’t immediately put every bill, statement or pay stub away in a difficult to open file box, she cuts it up with her scissors.  When she can’t find enough paper she just tears it out of my printer.  She has been going through my computer paper like it is roll of toilet paper.  A roll a day.

After painting the family room gray, I have decided I hate the blue in the living room and the green in my bedroom.  I am going to paint both rooms white!  Never thought I would paint a room white, but I’m doing it.  White is the new taupe.

We also got Apple TV and I spent 3 days off and on trying to figure out how to get the sound to come through the receiver.  I finally did it and we are loving Apple TV.  Netflix works so much faster than on the DVD player, Tiara is in hog heaven.

Our espresso machine broke again.  If you have been reading my blog for a year, you know I have issues with choosing and keeping coffee machines.  Luckily Kohl’s took back the old machine since we had it for less than a year,it was covered under the manufacturers warrant.  After a few purchases and returns, much to the dismay of Lou, I finally found a great espresso machine by Capresso.  She was about to murder me if I brought home another machine and didn’t keep it.

So that has been my never ending life lately. 

Happy Monday!

xoxo tiffani