My sweet little man


It is SO wonderful having my little man back.  He giggles, smiles, squeals, and interacts, and every part is AMAZING!

Unfortunately it’s hard to not fear the wean of his ACTH.  I keep reading posts from other moms and some babies regress again once off the medicine.  That must be unbearable. I pray with all my heart that Z’s results are permanent!  But lately moms of older IS children have been posting about their healthy, spasm free, normal kids, so that gives me hope!!!



Ribs for dinner tonight…

Because we got our BABY BACK!

LOL.  Yes, that’s silly, but we’re giddy.

We had a repeat EEG on Friday to see how it looks with his new meds, the ACTH.  Couldn’t believe it when the doctor came in and told us the EEG was normal.  NORMAL.   N O R M A L.  Even now, writing it, I just can’t believe it.

Sitting in the doctor’s office, finally getting a bit of good news, was incredibly emotional.  I mean, we’re not out of the woods yet, since he has a couple more weeks on the max dose and then several more weeks weaning him, and some babies do relapse. But still, this is the first bit of good news we’ve had. After months of trying to figure out what he had and how to best fight it, it’s a whole new set of emotion to find out we know what it is and have something that’s working and there’s no more fighting necessary. So of all the stinkin times to tear up, I chose that moment.  But they were true tears of JOY!

He got over the inconsolable crying and replaced it with smiles… SMILES!  We haven’t seen a smile in months, so it’s amazing and wonderful. He’s gaining back milestones at warp speed.  (He had lost a LOT… at 7 months, he was really more like a 2 month old.). So you can imagine our joy and excitement… complete elation!  🙂

I’ve been scared to write, as if putting words on paper (well, not exactly paper, but you know what I mean), was going to jinx it or somehow make it not true.   But I know that’s silly and I know there are friends and family who follow his progress, people who have been there for us and who have had Z in their thoughts and prayers.  We appreciate you being with us through all of the bad and are excited to finally share something good!

Please continue to keep him in your prayers as we get through the next few months.  We know he might eventually have other seizures or it’s possible he might have some learning difficulties.   But at least with the spasms gone, he’s got a shot at a good life, and that’s what we’ve been fighting so hard for.   😉

EEG tomorrow

We have an EEG tomorrow, bright and early.

Then off to the clinic appointment to discuss the results with the neurologist.  I’m crossing my fingers that the hypsarrythmia is gone.  GONE as in sayonara, adios, goodbye!  (That’s the FIRST step.  Then, if that’s the case we still have to get through another week on the full dose, and then the wean, and KEEP the hyps GONE with no relapse.  So, no end in sight, but looking for a positive sign!)  If the hyps isn’t gone, my heart will be broken.  I don’t know where we go from here.  Will hopefully discuss {finally} results of the MEG and see if surgery is or isn’t an option.  I guess I hope it is an option, but one we will never, ever have to use.

Then off to the ophthalmologist to check his eyes (since he’s still on Sabril).

Then, when we get home, my hubby should be home from his 2 week trip to China!

INCONSOLABLE crying (side effects of ACTH)

When I read from other moms that ACTH would be hard, I expected hard.  I knew he might be upset, irritable, inconsolable.

But then when it happened I realized I had NO idea.  It has been hard.  HARD.   REALLY REALLY FREAKING HARD.

For the last couple of days, he has been crying like I’ve never heard him cry before. It sounded like he was in pain. Nonstop pain.  Moving his head back and forth, over and over, not sleeping, not napping.   He probably slept maybe 2 hours TOTAL in 15 -30 minute segments in a 24 hour period.  He was absolutely MISERABLE, and docs said there was nothing we can do (not that they don’t want to help, but it’s a known side effect).  Other moms said just get through it and that their babies were helped after they were weaned.   But it’s freaking hard.  We are all on edge, all exhausted. I snapped at Abby about something that didn’t even matter and then beat myself up for it (and, of course apologized and tried to explain Z’s condition).

Then, last night he finally crashed. Slept all night. I kept waking up to make sure he was breathing and ok.  Then this morning, so far he’s been ok.  Not himself, but not inconsolable. Crossing fingers the worst is over, on so many levels.


I keep thinking how hard it must have been years ago, to not only get a diagnosis, but to cope and get support.  Technology has been our friend in these respects.  Yet, it’s not that simple. It’s a double-edged sword.  When you connect with other parents, you don’t only get the good stories with the happy endings. You hear all of their trials and tribulations as well.  So for every story about how a certain treatment or medicine worked, there are many others when it didn’t. As a parent, you learn to wait and see, but you learn quickly that so much of that is waiting to see when the next shoe is going to drop.

Brain Surgery for a 10 month old girl

I got an email from one of my best friends last night. A family moved to her neighborhood and their 10 month old daughter has IS, and today, she is having brain surgery.

Reading their story hurts. It physically hurts. I feel like we’ve been there, but also like it’s a map to where we’re going. Their doctors and our doctors didn’t make all the same decisions in the same order, but basically we’ve tried everything they have tried.

Scary stuff.

Scared to death

So… yesterday was a lot better than the day before.   The antibiotics kicked in and baby Z’s fever disappeared.

The pedi was still very concerned about his kidneys but agreed not to do any blood work until we repeated the urine test.  They wanted to use a catheter but baby Z has been through SO much so I told them just to put the bag on and I would be happy to bring back the sample.

We heard back that the new urine sample was fine… that he is concentrating his urine, which means his kidneys are working!   Phew! 

Glad I was at least able to save him from more unnecessary pokes (blood & catheter).

He was much more active when awake, though did sleep a lot. He was very vocal when he was awake too.

We moved up the dose from 25cc to 40cc, per neuro team. Will be there for a few days then will move up to the highest dose of 60cc.  Basically we were told it will either work or it won’t.  Either way, we’ll start to wean him off because at that point the side effects of the drug are worse than what we’re treating. 😦

I hope and pray it works, because after this, we’re out of real options. 

Then to start out this morning, he had about 10 spasms. The actual spasms are short, but the whole episode lasted 7 minutes. Plus, he cries after each one now, which is heartbreaking. I don’t know if it’s painful or if it scares him, or if it just feels weird.

Besides having blood pressure on the high side, he really hadn’t had any of the terrible side effects like extreme crying, mood swings, extreme hunger, etc.  But he has been much more alert, vocal, and even a little playful at times, though still not my smiley, giggly baby from before.  But I’m still hoping and praying the larger doses permanently do the trick. But we’ve only got one more dose and just 8-10 days left before we wean.  So I would appreciate you saying a little prayer for him.  He doesn’t deserve to be going through any of this.  😦