infantile spasms

Winter is Coming…

Lately we’ve been feeling like Winter is Coming.

If you’re a Game of Thrones fan you know the meaning behind this.  “Winter is Coming” is a motto in the show that means take warning and stay on your toes because something bad is on the horizon.  It’s also kind of literal because our memories of last winter are less than pleasant.

December 20th marked Paige’s MRI.
December 23rd came the diagnosis. (I also had an emergency appendectomy that day)
December 30th was our first neurology appointment where we learned the severity of Paige’s brain malformation.
January and February’s memories consist of the start of Infantile Spasms and a month long course of ACTHar steroid injections.  Health-wise, Paige has had a pretty good rest of the year year.  Her Infantile Spasms were controlled by the ACTHar and she has made quite a bit of progress developmentally that we were told probably weren’t possible.  We’re thankful for that and it’s been an amazing year of watching her and our son Will grow.

The past few weeks we’ve noticed some “questionable movements” that could possibly be seizures.  Luckily, Paige had a 24 hour EEG scheduled for yesterday and hopefully we get some answers.  Her neurologist and I agree that the reason the ACTHar treatment was so successful is because we started it almost as soon as Paige started having the seizures.  I’m hoping that if she is having them that it’s early enough and they’ll be controlled easily.  Hence,  Winter is Coming… We shall see…

Going back to this year, it’s been.. well, it’s been a long year. It’s been a year of the unknown. It’s been a journey of grief, acceptance, love, and adjustment. We’ve grown as a family in ways I never imagined and got our feet wet in a life-long road of a different kind of love. We’ve been overwhelmed with kindness from the people in our lives, we’ve felt lonely, we’ve gotten angry, we’ve struggled, we’ve made memories, met a bunch of INCREDIBLE families, and we’ve learned to be happy again. Constant learning and adjusting is the name of the game from here on out.

Andrew and I find ourselves reflecting on this past year.  There have been so many positives and great memories but as the air gets colder, we find ourselves thrust back into the rawness and realness of last year around this time.  In a way, I think it’s important to reflect on the bad and appreciate the good but it’s still painful.  Still, we’re determined to have a great holiday season and focus on the great holiday memories.

I’m planning on writing about the full 24 hour EEG tomorrow and other family updates tomorrow, but for now, here’s some pictures!

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NO MORE STEROIDS!

A big fist pump to the air was given yesterday after I gave Paige her last steroid injection!  She was an absolute trooper throughout all of them the past four weeks and we’re so thankful that it did it’s job.  Paige is still not exhibiting any infantile spasms and that is still a huge thing to be positive about.  She’s also back to the happy baby we knew and it’s such a relief.  

The first two weeks during her course consisted of a high dose of the steroid (ACTHar) in her thighs twice a day.  With every dose she was given vitamin B6 and Zantac for acid reflux.  During this time, she was a completely different baby.  Her bright eyes became heavy, she never smiled, and she just looked miserable.  You can tell it totally wiped her out and made her pretty zombie-ish.  It was heartbreaking.  Even though we were told that it was temporary, we still feared that it wouldn’t be and we missed our happy little snuggler pretty quickly.  She also ate like a horse and gained about four pounds in these two weeks!  Yikes!

The third week started the weaning process with only one injection a day at a lower dose.  Pretty easy right?!  Well, this was actually the most miserable and exhausting week. Sleep didn’t happen and Paige was up every hour and was at her most ravenous and was very fussy – we called this her ‘roid rage.  She was still pretty miserable and didn’t want to be moved around a lot.  The notes from her therapists said that she was: not alert, not engaged, not totally responsive, and rigid.  Our saving grace was actually a pacifier, that we dug up in her sock drawer, and it provided a lot of comfort to her and a lot of sanity for all of us!

And then HOORAY! The last and final week!  This past week, Paige only received a low dose every other day with yesterday being the final day.  I’m not exaggerating when I say that her personality changed almost over night early in the week.  Andrew was getting ready for work on Monday and I was making coffee (or something) when he called me over and yelled, “She’s SMILING!”.  

IT. WAS. AWESOME!  

Andrew and Paige always have had a special bond and it was really touching to see how excited she was when her daddy was talking to her.  She was just sooo smiley and alert!!  She hammed it up for her therapists and the adjectives in their notes turned to: active, engaged, pleasant, and feisty.  DEFINITELY easier to read than the previous week’s notes from them.  Her sleep even got back to normal and she was back to snoozing through the night!  Paige also seemed to be stronger and also rolled over from tummy to back with very little assistance. This was HUGE and we let ourselves be happy about this.  Celebrating the good times is definitely more fun then worrying and fretting.

Buuuutttt, it happens…

As a family, I’d say we’re doing pretty well considering it’s only been a month and a half since diagnosis.  However, since appointments and hospital visits have been slowing down I’ve had some more time to think and I’ve had some pretty bad days.  For so long, we’ve tried to look on the bright side and keep the negative thoughts at the back of our minds but this past week I couldn’t handle it anymore and I let it out.  

I let myself feel.  Whatever emotion I had, I let it out.  To be honest, I’m not proud about a lot of the things that came out of my mouth or in my head.  I can’t tell you how many times I screamed “IT’S NOT FAIR!” and asked myself “why MY baby?”.  I felt sorry for myself because I tried to do everything right during my pregnancy and my baby has a terrible diagnosis while some women do drugs during theirs and have completely healthy kids.  I know it’s not right, but I’m being honest and it’s how I felt at the time.  Why any baby, really?  Why any family?  Acceptance with the diagnosis comes in waves and it’s been a struggle.  I’ve always accepted Paige but I’m having trouble with the “why”.  While I can go about my day and have genuinely happy moments, there is a constant heaviness in my heart that won’t go away.  I’m not sure it ever will.  I’m hoping and praying I get to a point where acceptance isn’t such a struggle and our “new normal” becomes more natural.  

Thankfully, Andrew doesn’t really let myself feel this way for too long.  He has been such a beacon of strength for me (and everyone, really) during this time and encourages me to snap out of it.  While I have been pretty faith-based and look above for guidance, Andrew turns to science and medicine for answers.  In that way, I think we balance each other and it’s how we keep each other grounded, hopeful, and strong.  I think I definitely needed to cry it out, but after a while it’s not productive and it certainly isn’t good for Will to see in a puddle of my own tears for days on end.  We are very mindful that this whole situation affects him and we want every transition to go as smoothly as possible for our family. 

If there’s anything I’ve learned, it’s that we must live in the now.  Right now, we are okay.  Right now, we have a lot to be thankful for.  And that makes me feel so much better.

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EEG Results!

As my last post explained, Paige is finishing a month long course of a high-dose injection steroid to control her infantile spasms.  According to her Epileptologist, the medicine should work in the first two weeks and the last two weeks are for weaning.  We just finished up week three of the steroid and just had a 24 hour EEG to see it worked and we have the results….  

IT DID!!!

After over a month of bad news and setbacks, we finally got a shred of hope!  The EEG report showed that the ACTH (steroid) did stop the spasms and they should *fingers crossed* be at bay for a while.  How long they will be under control is still a question – it could be 10 months or it could be 10 years.  We don’t really know.  But, at this very moment she is not having seizures and we are celebrating.  

Paige was pretty out of it for a while and it was hard to watch.  She gained about four pounds and got really swollen.  Our normally smiley and cuddly baby was very irritable and uncomfortable and it broke my heart.  Within the last few days her smile has come back and she is getting back to her normal schedule and routine.  We are elated!  

We know that Paige will be prone to many seizure disorders in her life due to her Lissencephaly but, as we said, we have to take the good with the bad and these past few days have been good.  Her EEG’s will never be normal but her doctor said that Paige’s was the most normal looking one she’s ever seen for a kid with Liss.  She also predicted that Paige might have a burst in development soon and, even though I’ve always believed that she will, it makes me more hopeful.

We’d like to thank everyone for their prayers and I thank God every day for taking care of her.  And how about a shout out to science and medicine, too?!  I’m always amazed at medical professionals and we thank them for taking such good care of us, especially Miss Paige.

We’re happy.  

*sigh*  It’s good to breathe again…

 

“Good news is rare these days, and every glittering ounce of it should be cherished and hoarded and worshipped and fondled like a priceless diamond.” -Hunter S. Thompson

Thank You for Being a Friend!

It’s only been a few days since I opened the floodgates, and forgive me for sounding trite, but the support has been overwhelming.  All of the kind words, prayers, pep talks, and devotionals really are appreciated.  I even had a handful of families from all over the country reach out and share their experience which is ah-maz-ing because that was a huge reason why I even started the blog.  

If there has been one thing that is for sure, it’s that people are always willing to step up and be there.  Our families, on both sides, and friends have been there at the drop of a hat to come over to watch Will when we had appointment and hospital stays.  Or to just sit in with Paige when Andrew and I needed a break or let us shower in peace.  They’ve been there to help us run errands, fill our fridge, and babysit both kids to make sure Andrew and I could get out of the house.  Needless to say, we have a huge support system that is there to talk and listen when we have our weak moments and are there to celebrate with us when Paige (and all of us, really) are doing well.

Getting the diagnosis was absolutely excruciating but telling people the news was no walk in the park either.  Every single person has handled it differently.  Mostly everyone was quick to offer help.  Some were speechless.  So, so many people went out and put Paige on their prayer chains.  We’ve had countless messages from people offering support and well-wishes.  People have been there to let us cry and make us laugh.  Few people even retreated and laid low because they didn’t know what to say and some shared their own stories. It’s been extremely touching and we thank you all.

My childhood friend, and a HUGE inspiration for starting this blog, said it the best…

“If there is one thing that I have learned through my own health issues it’s that help is good, and you will be amazed at the people you will find that help you.”

She is completely right!

(and you should check out her blog, Breasts of Burden, about her journey through a bilateral mastectomy with reconstruction.  It’s incredible and I look up to her very much.)

Tomorrow, I will be posting from Children’s Hospital in Pittsburgh because Paige will be having a followup 24 hour Electroencephalogram (EEG) to see she is still having Infantile Spasms.  Wish us luck and thank you all, again!

 

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