You can run but you can’t hide…

This week has been Spring break for the kids (and Aaron being SUPER Papa) and one filled with doctors appointments.

Over the last week I’ve noticed that Trent keeps saying “ uh and what” a whole lot and as much as I thought it could be a 4 year old thing in my gut I knew it was more.  So, much to Aaron’s dismay (Katie  - must you search out trouble) but given our history with hearing stuff- I just wanted to jump on it.  Thankfully we have a relationship now with an incredible audiologist at Packard and she was able to get us in on Monday.  The toddler-hearing test though is much different than the infant one.  Concentration was key and Trent was so focused.  He wanted so much to hear the little beeps and he just couldn’t.  The mama was so proud. Ok so we failed the hearing test and he has fluid again.  Now it’s time for a plan.  It looks like he’ll be getting tubes again and I begged (big time) to have to have audiology get us in with ENT as soon as possible.  Apparently my begging wasn’t all that because the first available is April 21st. Not great but at least we have a plan and get his issues resolved as soon as possible to avoid impacts to his development.

Today was Sophie’s turn.  While Trent is rocking potty training, Sophie just can’t quite put her arms around it.  We know there are development issues.  She still toe walks and favors her right side when trying to skip or run but we know those are things we just have to work on everyday and work through.  We knew though that once potty training time happened – we may need more tests and that was today was about.  There is a strong possibility that her hydrocephalus has impacted her ability to “sense” when she needs to go and today we had an ultra sound of her kidneys. Aaron brought her up to Packard and I met them there.  I think she really appreciated having both of us with her.  It was nice to see some of our old friends at Packard and see their improvements (with lots of great landscaping and the toy train being upgraded). And Sophie was SO chatty. Saying hello to everyone, talking, smiling and just wanted to get to know everyone.  As luck would turn out, the ultrasound technician who did our study was someone who has known us over the years and remembered Sophie from her NICU days.  She was so happy to see her progress.   Sophie’s kidney issues are always just one of those things in my head and I guess 90% of the time I forget it’s there but today was one where I needed to remember.  I had mentally prepared myself to see her shunt tube all through her tummy (the first time I saw it years ago it completely freaked me out) but today I had my head about me to remind the technician that she has one kidney fussed in the center of her body.  Didn’t want the technician to think she discovered something that we didn’t know and would freak us out.  Although we had to go two rounds of trying to get the right picture, Sophie was a total trooper and just stepped up to having a very long ultrasound exam.   I think though having both Aaron and I there (I was holding her on the gurney) just made it easier.  On Friday we get to see “ the plumbing doctor” (his words not mine) to get the results.  Depending on the outcome, she made need a little surgical procedure to connect what hydrocephalus has prevented- to help making her body work as it needs to.

This week is also Spring break for the kids.  Granted there are no wild beach parties, thong bathing suits, or drunken fests, but Aaron has definitely had to step up. They are SO busy.  Trent no longer naps (huge bummer) and they both just egg each other on.  Lots of bike riding (for Trent only- Sophie is not there yet), baseball, coloring, dancing (to their special musical CD form Charles) and laying with our old drum.  Hours and hours of fun but poor Aaron.   It takes a lot to keep them occupied. School can’t restart soon enough. 

LInnea Johnson

LInnea Johnson’s avatar

Real life challenges can sure be a pain in the backside. But the blessing is the med. techs. that can do so much for these rocks in the road. Everyone is face with them, it’s just that some are more difficult than others to deal with. One thsing for darn sure, none of us are alone in dealing with them. Your little ones have conquered so very much and will continue to do so on their own terms. They will continue to surprise you daily. Hang lin there ! The best is yet to come!