2013 So Far

I have been really bad about posting lately.  It seems like every time I start to get to the computer something else comes up.  I have not posted at all in 2013 yet!  So much to update, now where shall I begin….

GI Update-
We are still fighting with gtube, but it is doing much better than it was before Christmas.  As long as we can keep Casey from laying on it, we are able to maintain it as is.  Hopefully we will be able to make it work long enough for some better veins to open up so the PICC will be an option when we need it.  Only time will tell.

Ortho Update-
We ordered a new wheelchair for Casey a LONG time ago.  We expected it around Thanksgiving, but the company was bought out, then there we other issues, long story short we have it scheduled for delivery Monday- YAY!!!!  They came out to do a final fitting/measurements a couple weeks ago.  We are very hopeful that she will fit much better and be more comfortable.  It is of course all Casey, pink and girly as it can be.

Not Casey’s foot, just a Google Image- 4th Metatarsal

We recently changed to a different company for her orthotics as well.  We really like the new company.  We picked up her new AFO’s just over a week ago.  They seem to be doing much better than her previous pair.

Our poor Nissan van was about ready to die so we got a new van.  We decided to go ahead and get one that can be modified with a rear entry ramp.  It makes life much easier loading and unloading Casey.  We are still getting used to it.  We drove Nissans for so long, switching to a Chrysler is a big change.  Without the new wheel chair yet, we are still adjusting where everything fits in the back.  The new chair will make a big difference.

Casey had PT this morning up at the outpatient side of the hospital.  We loaded up the van and Casey started screaming as I got her positioned.  I managed to get her foot caught on the seat belt (the hard plastic part that you plugin to).  I don’t know exactly what happened since I did not see her foot, but when she started screaming we saw that her big toe had a hot red mark on the top and side.  Since we were heading to the hospital anyway we gave her some pain medicine and then I called PT on our way.  Her PT called the ortho to let them know what had happened and that we were on our way.  Everyone was so nice to get us taken care of and avoid the ER.  The ortho’s nurse got us in for xray and while we waited PT was able to work on the rest of Casey.  Sure enough, however her foot bent when it got caught caused a fracture.  I broke the baby.  There is a fracture on her 4th metatarsal on her left foot (her good foot).  I feel horrible about it.  The staff pointed out on the xray that Casey has very brittle bones, but I still feel horrible.  I am usually so careful.  We’ll go back in 3 weeks to have it re imaged and go from there.   Since Tim was at home working I did at least call him ahead of time to warn him before I brought her home in a cast. 

Nursing Update-
We are not back to having all of our shifts covered just yet.  We have found a new nurse that wants to pick up our open shifts, but has other patients right now that conflict with our schedule.  It looks like in about 3 weeks she will be able to pick up a few more.  Then we should have at least 4 if not all 5 of our day shifts covered again.  Right now we only have 3 days and I am not getting much done during the week.  The extra 1-2 shifts will make a huge difference.  Who knows, maybe I will be able to find time to post updates here more often.

Fun Stuff-
Casey had a date with her little boyfriend a few weeks ago (a pre-Valentine date).  He came to the date dressed up as her prince.  It was one of the cutest, sweetest things I have ever seen.  He brought her a princess dress.  He told me that it was long, just like a real princess.  Casey loved it and wore it to dance the next week.  She is doing great in her dance class.  She loves it.  Her recital will be this summer and I can not wait.  She is such a little diva. 

We have decided that school is not working out for Casey.  She had moved from the classroom to home-bound this year.  Even being at home though just is not working.  We had to cancel all the time for appointments, seizures, gi issues, etc.  We decided that rather than pushing her to do school when she is not up for it that we would just pull her out.  Now on her good days we can try to go to the library for story time, or do things that she really enjoys.  It will be when she is up for it instead of on a set schedule that may or may not coincide with her good days.  She loves to do arts and crafts, read stories, etc.  I think doing it this way is going to be a lot more enjoyable.  Tim said we need to find a “My Kids a 1st Grade Drop-Out” bumper sticker.  I am pretty sure they don’t make those.

That’s about it for now.  Hopefully we will have picture of a new wheelchair to post next week.  Until then, we hope everyone is doing well.

This entry was posted in Casey.