If it ain’t one thing, it’s another

In my last post, I mentioned a number of doctors’ appointments. I glossed over what came to be the most significant appointment we had.  To catch up, first we went to see Kelsey’s neurologist.  That visit was quick and easy.  Her doctor (and we) are very happy with the fact that Kelsey’s seizures are under control with medicine.  We anticipate her being on the medicine for some time but we will reevaluate that when the time is right. Good news!

The next day we went back to Johns Hopkins to see Kelsey’s neurosurgeon.  This was another uneventful visit.  We aren’t learning much from this doctor lately, which is a good thing.  Her hydrocephalus is under control as well, both through the functioning of the shunt that she has to rid her brain of excess fluid but also, since the shunt is “dialed up” so high (which means little fluid is flowing through) her brain has learned to adapt and accommodate and it’s functioning even without much help from the shunt. (I think that was most definitely a run-on sentence. Forgive me). So…Great news!

Then after a weekend break of appointments, we went to Kennedy Krieger Institute to meet with a developmental pediatrician for Kelsey.  This appointment wasn’t as “great” or “good” or even “fine.”  It sucked.  She didn’t want to be there (for two hours) like most toddlers, nor did we.  The doctor didn’t give us much hope or much help.  She gave us depressing developmental percentages that we already knew but without hearing them calculated in such a way.  She said that Kelsey lost a lot of developmental time (5 months) during her period of seizures (Dec ’14-May ’15).  Not news to us.  And she said we would basically have to wait and see what happens.  She said we were doing everything we should be (therapy, therapy, therapy) but that we should also focus on extra speech therapy to breakthrough the communication barrier.  So we left feeling defeated.  Again.

Then as we started to shake that appointment off and decided that the doctor didn’t tell us anything we didn’t know…we went to Kelsey’s (and Ben’s!) orthopedist two days later.  This doctor prescribed AFOs (ankle-foot orthosis) about 9 months ago.  They didn’t work.  Then we tried a different design.  They didn’t work either.  In the spring, the orthopedist told us to just wait and see how she developed without any sort of brace.  So we did…and came back 4 months later for a check up.  Last week, an xray was done and while I was expecting some sort of brace to be suggested, instead the doctor thinks surgery is now the answer.  The orthopedist saw that Kelsey’s hips are out of correct socket-placement.  She thinks that surgery is the best option to prevent her hips from becoming dislocated.  She thinks this will also give her a better chance of walking.

So another surgery. Or 2…or 4…hear me out. The surgeon will cut both femurs, rotate her hips into alignment, and cast her from the waist down for about a month.  Then, at some point after that, another operation will be done to remove the pins that the surgeon puts in during the first operation.

Invasive surgery (again).  A half-body cast for 4 weeks.  Right now, that’s where we are for the moment.  This week we will get a second opinion.  And then, I guess, we will schedule the surgery.

See why we waited until the end of the summer for all these appointments?!  I am dreading the surgery…depressed…jealous of healthy families…and SO DAMN TIRED of it all….it’s ALWAYS something.  Dave is stronger…more optimistic…happy there’s a way to “fix” a problem.  I’m not there yet.  Hopefully the second opinion on Thursday will help to sort out the many questions we have. 

Until then, while out for some retail therapy the next day, I did find this perfect sign for Kelsey’s room at Home Goods…


I sure hope so…

3 thoughts on “If it ain’t one thing, it’s another

  1. My heart breaks for you, Kim. For all of you. There is nothing anyone can say or do but say this SUCKS!!!!!! You have every right to be down and jealous. I will say lots of prayers for you all that the “brighter” path is quick to show itself. I am so sorry 😦


  2. You are seriously the best mommy I know. Kelsey & Ben may be perfectly imperfect in body, but their soul radiates pure strength and peace because of you. And Dave too of course 😀


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