Wednesday, May 22, 2013

May 2013 Update

We are mid-way through May and the theme of this month has been time outdoors, whether it has been needing snowboots (for the big 15-1/2 inches of snow we got on May 2nd) or puddle stomping in our tennis shoes, or hanging out in shorts and tank tops once the temps got warmer.   Gracie loves to be outside.  Here are a few highlights from May:

  • Gracie's most frequent request, other than to play outside, is to eat on the deck.  So we've been having a lot of our meals there.  She is happy as a lark.
  • Gracie's neurology appointment was very positive, she is now 67 lbs, and just a little over 4 feet tall.  Even though her weight has increased, we've decided not to increase her seizure meds.  She hasn't had any breakthrough seizures for almost 2 years now that she is on brand name meds, so we are hoping we can lower the percentage of med to body weight.  This is good news for us our out of pocket for Gracie's seizure meds went up from $3500.00 to $4500.00 this year for a mere 100 day supply.  Any increase's mean our out of pocket increases.  Silly insurance company still won't recognize her need for namebrand, so we get to pay the amount over what they would pay for generic.  
  • We still don't have resolution regarding the wording on Gracie's IEP for avoidance of nuts at school for next year.  We had a very productive meeting with key members at school.  We presented our concerns to the Special Education director and asked for a one-on-one paraprofessional for Gracie for next year.  Her allergy is with ingestion and contact and she is still so very oral...she puts everything, including her fingers in her mouth.  She'll be exposed to so many more locations at school next year that many involved feel like it's a wise decision to have one para assigned to her to keep her safe and recognize any potential allergy issues quickly.  We are still waiting on a decision to be made.
  • Gracie got a new tricycle...this is not any ordinary tricycle as she is way too big for a kid's trike...this is a Trike-Zilla (I'll have to take a picture of Gracie riding it and post it in the near future).  It will accommodate to 300 lbs and 5'8".  Jeff presented it to her while I was gone and she was none-to-thrilled.  Now that she is used to it, she loves it.  We're still working on being able to ride it independently.  She can't pedal if there is any type of incline....just doesn't have the muscle power yet.  We also have to work on her steering...she is all over the place.  I have a feeling by the end of the summer she'll be a pro.
  • Gracie was having a tough time at daycare for a couple of weeks.  She was very possessive of a beloved teacher.  She would scratch, pull hair, etc. of said teacher and anyone who wanted to talk to her, including her classmates, especially during outside time.  This teacher is taking on the assistant director role at Gracie's daycare.  We suspect that she sensed there was something going on...since we've been able to talk with her about that, she has been so much better.  The kid is a smart little cookie, she just can't verbalize all the emotions and questions she is processing.  
  • Grandma & Grandpa D have made their way to our city for the summer, so Gracie has been enjoying their visits.  
  • Gracie also got to visit Grandma & Grandpa B on Mother's Day...that was great fun also.  She had lots of cousins, aunts, and uncles there to give her attention also.  
  • Gracie had a cold recently, it was pretty short lived, but her cough continues.  The cough sounds productive, but it takes her breath away when it comes and it sounds horrible.  I was contemplating taking her to the doctor, but I was hesitating because I fear she'll pick up yet another virus.  She coughs and coughs, but nothing seems to come up...until today.  She is sitting at the computer looking at pictures as I'm getting ready for work.  She has a coughing attack and pretty soon I hear her say "Uh-oh!"  I apparently didn't respond quickly enough...soon a very urgently said "Uh-oh mom!"   I walk out into the living room and she is covered in phlegm.  It's on her hand, it's all over her pants to the point that we had to change them.  It's everywhere!  I'm hoping this might be the end of that silly cough.  (And yes Arlan, this story was for you!)
  • Gracie only has 7 more days of school left...where did the school year go.  Daycare has a ton of fun activities planned, so I think she is going to have a fun summer.
I hope May has treated you well.

Lisa, Jeff, and Trike-Zilla riding Gracie