I’ve come to dislike April.  In 2013, on April 25th, Kelsey was first suspected to have hydrocephalus.  We had a routine sonogram and the dilated ventricles were detected at 33 weeks gestation after an otherwise healthy and normal pregnancy.  A day later it was confirmed.  Two weeks later it was obvious she had had a stroke in utero, which likely caused the hydrocephalus.  And days after that she was delivered, via c-section.

Last year, on 4/4/14, Kelsey had strabismus surgery to correct her eyes turning inward.  The surgery went ok, but the days, weeks, and months (year!) that followed proved to be very difficult.  We attribute Kelsey’s poor mood to the surgery and altered vision, but after this April, maybe it was something else causing her unhappiness and lack of development?

And, here we are in April of 2015, and we are going through more challenges with Kelsey Ann.  If you’re behind, Kelsey was diagnosed with Infantile Spasms aka seizures on 4/7/15.  And this April has been another one for the record books.

We were hoping that a heavy dose of prednisolone (a liquid steroid) would knock the seizures out completely and that Kelsey would be seizure free.  That didn’t happen.  She’s been on the meds since early this month and while the spasms decreased dramatically…at least the ones we can see…they aren’t gone completely.

We took Kelsey to have another EEG this past Friday and even though we only saw 1-2 spasms per day, more were seen through the test.  And any spasms are too many.  So now we will wean off the prednisolone and start on a different seizure medication.

Right now, that means that she’s taking three liquid medications in the morning and the same three in the evening, plus an extra dose at lunch.  That’s seven doses of meds for a 23 month old in 24 hours.  Fun stuff.  Actually she’s been great about taking the meds.  Her saint of a father learned that calm voices and talking her through it works very well, compared to the head-lock, cool-loosing mother’s mode of giving the medication.

By this time Wednesday, we will lose the lunchtime dose and by May 4 we will almost have weaned off the steroids.  That is good because Kelsey is definitely experiencing the “Roid Rage” I’ve heard about.  She’s cranky, short-fused and not tolerating much.  She’s eating like a horse and has gained weight quickly as well. 

In the grand scheme, I’m glad there’s a “pill” to cure this disease.  Hopefully, it is in fact, her cure.  We’ve been warned that the search could continue for awhile for the right cure for her.

I’ve slowly wandered into the grieving wonderland of “acceptance,” but it’s still hard to accept.  All we want is a happy, seizure-free, developing toddler.  If that means she has to take some medicine to be there, that’s fine…I guess.  And then I would like the rest of our Aprils, and every other month for that matter, to be healthy for my family.  I know that’s all anyone wants…And life could be so much worse…We have so much to be thankful for…But we could really use a break.  Thank you very much.

This past week has not been an easy one. We are really struggling with one more BIG thing added to our list of woes.

Kelsey’s mood has been pretty dismal until some relief yesterday afternoon.  Coincidently the cold she’s been fighting seems better today, so the terrible mood could be related to her cold symptoms. I’m hoping so, and that she will start feeling better and willing to be put down, play, and smile a little more.

The spasms have decreased dramatically. We thought this was great. We have been tracking them very scientifically.

Not. But it does show that the spasms have decreased from our estimated 10-20 before beginning the prednisolone. Which we never, to my dismay, tracked like this. It seems like a ton when they are happening, but when you write them down they don’t add up to quite as many.

Yesterday she only had one spasm. So we emailed the neurologist, thinking this was a cause to celebrate. Instead, she was hoping they were gone completely already. This was not the impression we were given at our appointment last week. Yesterday she told us if she had another one yesterday or today, we’d up the drugs and be on a new timeline. We were pretty depressed. We thought we had two weeks for them to be gone. Guess not.

Unfortunately today she had two spasms. One while I was snuggling her in her nursery this morning. Another while we were out to lunch with MomMom. Two would have been unheard of a week ago, but today it was two too many.

So, tomorrow we will add a fourth dose of prednisolone. I reeeeeeeeeeeaaalllllllllly hope this doesn’t make her mood any worse. It is hard enough to care for a toddler with developmental delays and vision problems. The bad mood. Well, it does NOT make life fun.

Thanks for the calls and texts and the outpouring of love last week on Facebook and the blog. It really means a lot. We feel like we’ve overextended our sympathy needs from our family and friends in the sick kids department.  But each and every diagnosis and hurdle is just as hard as the first. We may have thicker skin, but that’s it. We are hurting just as much, since our baby is hurting…again.

Good News– We have a name for the jerks/startles/hiccups that have been affecting Kelsey the last three months.  They are called Infantile Spasms.  Yesterday, Kelsey had an EEG at Hopkins to find this out.  She did very well with all the electrodes on her head.  She even slept before the technician was finished putting them on and for a good bit of the monitoring.

Bad News– They aren’t as benign as our pediatrician and developmental optometrist made them seem.  Kelsey is having a good bit of seizure activity.  While it’s good to have answers, I HATE having ANOTHER diagnosis for her and our family.

Good News-Seizures are very treatable.  The neurologist we added to our docket yesterday prescribed prednisolone.  It’s the liquid form of prednisone that most of us are familiar with as a steroid.  She will be on a high dose of the steroid for a month.  That’s it.  The prednisolone should stop the seizures pretty quickly if…

Bad News-…it works.  While treatable, seizures aren’t predictable.  You may have noticed I referred to the spasms as “infantile.”  But Kelsey is one month shy of two years old.  She hasn’t been an infant for awhile.  It is abnormal to have these types of spasms at her age.  I swear.  Our “luck” on this stuff is incredible.  So, the doctor isn’t exactly sure the steroids will work.  They usually do, but Kelsey’s case isn’t usual.  Awesome.  If the steroids don’t work, we will know pretty quickly.  We should see them stop within two weeks after diminishing rapidly.  There are many other seizure drugs that we can try if this doesn’t work (but they all come with their own side effects so I’d rather not get to know them.

Good News– I’m all out of it.

Bad News–Steroids can cause some unpleasant side effects.  She will be on them for a short period of time, but it’s a high dosage, so we shall see how it all presents itself.  We were also given Zantac to be taken twice a day to help treat the upset stomach that she may experience.  And, we were told that irritability can also be a side effect of prednisolone.  NOOO!!!!  Remember, my recently very sweet baby just had a 10 month bout of irritability.  I’m really hoping that the doctor’s definition of irritability is different than our very real experiences with recent irritability.  The girl we spent all day with at Hopkins who was charming people left and right and smiling, laughing and flirting to get our attention makes this new pill a little easier to swallow.  I’m very scared of irritability.  But, the doctor assures me it’ll “only be for a month.”  Fingers crossed.  Sleeplessness and an insatiable appetite are other side effects.  Just what every mother-of-a-toddler wants to hear…sleeplessness.

Good News-I guess there is more…I’m easily distracted to focus on the negative.  The doc said that kids with seizures also experience delays.  Yep.  Kelsey is delayed in many areas.  But, after the seizures stop, development starts to pick up again.  I’m looking forward to some new milestones.  We’ve been “stuck” for many months at a certain level, despite our some times four therapy sessions a week.

Bad News-Once we stop the seizures, it doesn’t mean we’ve stopped them forever.  And this is the scariest news.  The unknown.  Once someone has seizures, the likelihood of them developing again is there.  And if they are exactly the same type of seizures as she’s having now, we can treat the same way.  If not, we’ll have to try something different.  A seizure can look like the jerks Kelsey is having, or they can present in a very wide array of displays.  She could “just” stare off in space, for example.  But all of it is a pause in brain activity (my own understanding).

That’s it for now.  I tried to end on a high note, but it just didn’t happen.  Please keep us in your thoughts and prayers.  We still need ’em!  We will be making lots of trips to the pediatrician and hospital in the next month, so we will need strength and patience.  Thanks for all the recent love, as well.

We had a wonderful Spring Break and Easter this past week, despite all four of us getting a cold!  We were able to take a trip to a beautiful hotel on the Chesapeake Bay for two nights.  We ate, drank, enjoyed the views, played mini-golf, threw shells into the bay, roasted s’mores, napped and swam in the indoor pool.Ben, just this month, has finally learned to swim!  We are so excited!  He has worn some sort of floatation device until now, but Dave and I were determined that he would know how to swim by this summer.  And after private swim lessons all winter, he does!  Our first goal was simple… for him to be able to not drown.  The doggy paddle was good enough for me!  But, after seeing his growth this winter, I think I may have set my expectations too low!  Go Ben, go!

Kelsey surprised us a lot this past week and month too.  The new glasses prescription and occlusion tape (inner corners of her glasses to prevent double vision) seem to be making a positive difference in her mood.  I have been loosely doing vision exercises with her but at her current level of development, that is kind of difficult.  Food seems to be her biggest motivator in all things therapy, so we use that for a lot!  Snacks are our friend.  We use Gerber Puffs to cruise the coffee table, Cheerios to learn to sign “more,” and Veggie Sticks to track and follow with her eyes.  Whatever it takes, right!?!

Around the same time as our appointment with the developmental optometrist, I also stopped giving Kelsey Miralax for her constipation.  I’m a bit ashamed to admit that she was taking it pretty consistently since she turned one.  Around the time she fully started eating solids, she became chronically constipated.  With her doctor’s continued blessing, I’d give her the Miralax (a very small dose) everyday.  Well, without sharing too much information, apparently Miralax can do funny things to your body besides it’s intended purpose.  I tried it myself to see what it was like and was often suffering from some abdominal pain.  Besides that clear reason to stop, even though it helped her, I didn’t love that she was taking it…despite her pediatrician’s approval.  So, I decided to try prune juice again even though it failed to help her months ago.  Well, it worked this time and she’s been able to maintain her regularity without Miralax!  If you’re keeping up, the new doctor, the new glasses, the vision therapy, and no more Miralax all came around the same time.  Not to mention the fact that the temperatures have started rise and we’ve been able to get outside more.  I’m not sure what, exactly, has improved her mood.  A combination of all of those things?  Just the vision improvements?  Just the lack of Miralax in her system?  Whatever the case, I’m begging the universe to let it continue, despite the fact that I just “put it out there.”

I’ve been keeping my trap shut about her mood improvement until now because it seems whenever I celebrate a change, it stops.  I’m sure other parents can relate.  “He finally slept through the night!!”  Not any more.  “She’s taking longer naps!”  Haha!  Yeah, right!  I’m definitely superstitious when it comes to sharing something I’ve been wishing for…especially when it comes to the kids.  So let me take a minute to KNOCK ON WOOD!!!  So our trip was great even though Ben and Dave had a cold.  Kelsey’s mood was wonderful and she was enjoyable to have around again, and it was time for Easter!  Annnnnnd, guess who woke up sick just in time to see what the Easter Bunny brought?  Yep, Kelsey had a full-blown cold on Easter morning.  Things didn’t seem positive when I had to wake her from a deep sleep to go to church, not when she woke up after a very short afternoon nap, nor when she was so cranky and tired that she had to take a third nap right before the family arrived for dinner.  But, my prayers were answered!  Kelsey has not made a family gathering enjoyable for her father or I in about a year.  I had prayed that she would be as happy as she has been at home from at least 4-6pm.  And she was!  She played a little, observed the egg hunt, ATE DINNER WITH THE FAMILY (this hasn’t happened…ever?!?), and even participated in the gift opening and dessert.  It turned out much better than any gathering we’ve had in a long, long time.  Dave and I were/are so happy!  Hopefully there are more in our future.

It was was a great week, but for now, it’s back to our reality.  Tomorrow, we are heading to Johns Hopkins so Kelsey can have an EEG.  While Kelsey’s mood has improved with all these changes, her little startles have gotten worse.  I mentioned these little jerks Kelsey is experiencing before on the blog here.  Two doctors have told us not to worry, but my gut is telling me to get another opinion.  We decided to worry when a spasm or two caused Kelsey to lose balance and fall down.  And some times when she’s really tired, the little jerks cause her to cry.  So we are going to see a neurologist tomorrow.  Hopefully she will be able to explain these and calm our fears.  If you’re the praying type and could pray for us, I’d be so grateful.  If not, and you could cross your fingers or do a little dance, that’d be great too.  It all works or we wouldn’t be where we are today!

Sorry this post was all over the place.  Our life is a daily roller coaster of emotions.  I’m so happy to report that we have been “up” a lot more lately.  Hoping this trip tomorrow to the hospital doesn’t bring us too far “down.”