Plugging Away

We've just been plugging away lately.  Leah had been not feeling the greatest for about 2 weeks, and last Monday night we took her to the pediatrician where she was diagnosed with an ear infection.  So that's why she was soooo cranky and fussy last weekend.  She also had been having some teeth pain, so we had been giving her motrin and teething gel as well.  All the while we were both getting nervous that she was having shunt failure, but she seems to be on the mend now.  Just last night I was tickling her and getting the best belly laughs from her, so I know she's in better spirits.

Last Thursday I did take her to see Dr. Marker, her SB doctor.  He wanted to see her for himself.  He looked at her ears and saw that they are getting better, so that was good news.  But he spent a lot of time reviewing her last couple head ultrasounds and was a little concerned.  Since April we had been seeing her brain ventricles grow a little bit, but was managed with shunt adjustments.  Now that he looked over all of her ultrasounds, he was more concerned that he had been.  He wants to do another sleep study to see if her breathing has changed since the last one we did back in December.  She had been gagging more than normal and more spitting up, which can be a side effect from her Chiari, and ultimately a reason to do a shunt revision.  I'm hoping that it's unrelated and just due to feeling a little under the weather, but I also think we're heading closer and closer to a shunt replacement. *insert sad face*

It just really reminds me that no 2 Spina Bifida kids are alike and it's almost as if we're dealing with a condition no one has seen before.  It's so unique to Leah and what works for 1 kid doesn't work for another.  It's also not a cut-and-dry condition.  For now her head is still really soft and can accomodate a little excess fluid if her shunt is not working as well as it should.  So its appropriate to wait and see right now.  How often have I said "wait and see"???  Le sigh.  That's ok, I just keep reminding myself that it's better than the alternative and everday we can keep this current shunt is a good day.