No surgery!

I need to update those non-Facebookers of the world on Kelsey’s hip surgery.  There isn’t gonna be one!  Phew!!

Last Thursday, we went to see a pediatric orthopedist who specializes in kids with neurological disorders, such as Kelsey.  After looking at her x-rays, he does NOT think Kelsey needs surgery to fix her hips that are out of proper alignment.  He isn’t overly concerned and thinks time and weight-bearing exercises are what Kelsey needs.  He also thinks that she’s not a good candidate for AFOs as she has a nice arch in her foot.

We were so relieved to hear the invasive surgery with a very restrictive recovery is no longer in Kelsey’s (immediate) future.  It doesn’t mean she will never need surgery, but it’s not the answer now, and for that we are relieved.

Until then…LOTS of therapy, time, practice and patience are in order.

Hard at work at her first of three therapy appointments this week

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…

A Hopkins Trifecta

Today we met with Kelsey’s neurologist.  Tomorrow we go right back to Hopkins to see her neurosurgeon.  And Monday we head to Kennedy Krieger Institute to meet with a developmental pediatrician for the first time.  A Hopkins trifecta.  We scheduled it all this way kind-of on purpose.  We didn’t want to think about anything to do with these appointments or what may come of them during the beginning of summer, around our tenth anniversary, or during any of our vacations this summer.  So we pushed it all…including a follow up with our orthopedist for both kids next week…until August.  And lo-and-behold, August arrived.  Boo.

Today’s three month follow up with the neurosurgeon went well.  It’s hard to see when you’re living day-to-day, and there are still so many obstacles, challenges and developments that Kelsey has yet to make, BUT she has come a long way since May.  She is exploring more, engaging more, and playing more.  And most importantly, her seizures are G.O.N.E.  When we went for the first time in April, our doctor said that epilepsy was very common (1 in 26!!!) and very curable…but finding the cure was the hard part.  We attempted to knock out the spasms with a high dose of prednisone, which ultimately didn’t work.  Then we tried Topamax…and it worked!  After one, very small dose on April 25, 2014 (ironically two years to the day since the posthemmohagic hydrocephalus…aka water-on-the-brain caused by a stroke in utero…was detected) we never saw another seizure. She takes Topamax twice a day, and after a little cherry flavoring added by our so-nice pharmacist, she takes it very willingly.

Visiting the White House, and the last day a seizure was seen
Visiting the White House, and the last day a seizure was seen

Dr. Kelley was pleased with Kelsey’s development in the last three months, how the Topamax was working for her, and gave us some good information for what to look for in the future regarding seizure activity, growth and development.  Not surprisingly when she asked how Kelsey was doing, I went into a too-long explanation of her moodiness, high-maintenance ways and general difficult nature.  I also focused on the new play and gross-motor skills she’s gained.  The doctor smiled, nodded and took copious notes.  And then she asked in a very quiet and calm way, “How about the seizures?”  HA!  Right, that’s why we are here.  Oh yeah!  They’re gone.  Not a one since April!  Guess that’s what you meant, huh, doc?!?  A bit more important.  LOL! OOPS!  Priorities.

Tomorrow, we will go to Kelsey’s six month check up with her neurosurgeon who has operated on her four out of the five times she’s had surgery.  We are really fond of Dr. Ahn and don’t expect any surprises tomorrow. Nor are we nervous about it…it’s more of a drudgery of driving to-and-from East Baltimore again and being at the hospital.  We are curious about the correlation between hydrocephalus and epilepsy as it came as a surprise to us in April, but I’m not sure it should have.  I don’t think it’s all that uncommon to have seizure activity after the trauma that Kelsey’s brain has experienced.  Seems realistic right?  Should it have been mentioned as a possibility?  Or reacted to more when we saw (and reported!) what were her first spasms in late December? We’ll see.

On Monday, we will visit with a developmental pediatrician at Kennedy Krieger Institute.  Did you know it’s not all that easy to find a developmental pediatrician?  KKI is where you go in the Baltimore area.  I have an opinion, especially as an educator and special needs parent, and I didn’t think KKI was a place I ever wanted to be with my own kids.  We shall see. We definitely need some guidance from someone who can take all that Kelsey has experienced, evaluate her currently, and give us a good plan for the future.  Right now all of her doctors and therapists are telling us that she’s at a 10 month old level, developmentally.  We, begrudgingly, agree with this.  She’s crawling, cruising, pulling to stand, climbing stairs, drinking from an open cup (in the bathtub, at least!), turning pages in a book and babbling (sometimes).  She has not uttered a word, doesn’t point, doesn’t (consistently) wave, and only follows directions about 25-50% of the time (although I’m not sure that’s that uncommon for a 27 month old!).  😉  And she whines to get all points across which is slowly driving me to the brink of insanity.

Ben saw a developmental pediatrician only once.  We didn’t love him but we did gain some information that was valuable for his years to come.  He told us to make sure he was never in a special needs-only classroom.  He needed to be with typically developing peers.  He also told us that fatigue would be Ben’s biggest struggle in life.  We made sure he always had typical peers to learn from and he was totally correct about the fatigue issue…at least thus far.  So I’m anxious to know what this doctor can do to help Kelsey.  Again, she’s come so far but also has so far to go…

Swinging's my favorite!
Swinging’s my favorite!

So, one appointment down, two to go.  It’s a week with a lot of stress and I can only hope that the next two appointments go as well as, if not better than today’s.  Thanks for your continued prayers and good wishes.