Lists!

Next week is a big week for the boys medically.

On Wednesday, we meet with a neurologist from their new children’s hospital, and hopefully tackle the following:

  • If the Sabril continue to be ineffective, what are our next steps?
  • We need to schedule a swallow/barium study.  There are no obvious signs of aspiration, but their frequent viral issues/congestion can also be a sign of silent aspiration.  We want to make sure we aren’t being too dismissive.  Especially as we start to try to introduce more challenging foods.
  • I want to inquire about Vagus Nerve Stimulation.  I saw those words for the first time last night, and then today my sister-in-law sent me a text asking if I’ve heard of VNS.  Seems like something I need to understand better.
  • We need to schedule a specialized eye exam, (beyond the physical exams they’ve been having).
  • We need to assemble the “new” team and figure out who else will be involved in their care and at what frequency.

On Thursday we see their pediatrician.  Getting established with a local doc will be helpful for a number of reasons.

  • I need a local pediatric therapist recommendation.
  • I need help with local options for Palliative care.
  • I need someone I can call for referrals for programs like Help Me Grow/Birth to 3.
  • I want them to know who our boys are and what we are dealing with so when our first urgent phone call comes in…we aren’t starting from scratch.

In the meantime, I’m very excited about a new development.  Thanks to a developmental disability waiver, the boys are in a program that tries to assist with equipment.  I don’t know exactly how this will play out, but we are trying to obtain:

  • Special Tomato Seating (one for each boy)
  • A bath chair
  • Therapy devices (wedges and rolls)
  • A vestibular swing

So…if all goes according to plan (because that’s how life works) we’ll be established with our new local and specialist medical team, and well on our way to creating a more accommodating environment for the boys by this time next week.  Sounds easy enough?

 

 

To the Mom Forced to Choose

This time last year…

In what seemed like seconds, I went from a glowing pregnant mom expecting boy #2 and boy #3, to a crying mess, not knowing what to expect. We started with Dandy Walker, and progressed to Lissencephaly. We were informed of abortion rights, warned of looming death, and on more than one occasion, feared we might lose Nolan before he could even be born.

As our news unfolded and my heart unraveled, I started searching frantically for moms like me. Moms who had heard this or a similar combination of news, but were choosing life. I found moms who had kids doing things we thought might be impossible. I found far more moms whose babies were already angels. Our particular combination of brain conditions was few and far between, (I only found one at the time) but the message I got by observing all of the stories was the same. There was no way to predict what was coming, or what OUR story would be.

That frantic search is one of the reasons I share our story so openly. And sure enough, those moms like me find us. They sometimes write me with concerns or questions. I am honest, but I can never offer any assurance about where they are headed. I wish I had something perfect to say to that mom…to ME this time last year. But there is nothing I can write that will help. I cannot advise. I cannot predict.

If I knew then what I know now…well, that might make the rest of the pregnancy easier. But that wouldn’t be fair. A large part of the struggle of dealing with an in-utero diagnosis is the wait, and the uncertainty. Being able to see photos of my smiling blessings might be comforting, but it wouldn’t tell me the whole story. It might misrepresent some of the heartaches we’ve had, how they are far behind their typically developing peers, or how they are “on track” with the horribly low expectations for Lissencephaly.

Somewhere out there, another mom like me is reading this. Perhaps not long after hearing her own baby has been dealt an unexpected label. And just like I could have in no way looked one year in the future…that mom cannot possibly look at our story and know where she is headed. I can’t say… “See! Your baby will live!” “Your baby will eat by mouth!” “Your baby will leave that hospital and make it home to enrich your lives in ways you never thought possible!” “Your baby will have a smile that could inspire the world!” I couldn’t have known that about our boys one year ago. And “that mom” can’t possibly know that about her own baby today. The cloud of uncertainty. Of fear. It cannot be escaped.

So instead of looking at where our boys are today. Instead of seeing how we find ways to love and be joyful despite the circumstances. Instead of talking about how this has strengthened my faith instead of shattering it. Instead of giving you the “if I knew then what I know now” thoughts…I’ll just say this…

I don’t know where your road will lead, or how your story will unfold. I don’t know what decision you will make, and despite the judgment you might expect to find here, you will find none. No one can understand what you are feeling unless they have been there. And only those who have been told to choose know the secret that there is also a tiny bit of guilt in choosing life when the quality of that life is so unknown.

But know this…If I were once again in that painfully vulnerable point, I would without a doubt make the same choice. If I was pregnant again today, right in this moment, and we heard those awful words about our next child. If I heard the odds, the risks, the downsides, the costs, the horror stories. If I read the life expectancy over and over and over until the phrase “two years” was burned in to my red tear filled eyes. If I knew as little about that baby now, as I did about our twins one year ago, I’d still do it all again. I’d see it through. I’d give him/her/them a chance. Because no matter how your story unfolds, you will never regret loving your child with all you have.

Don’t Mind the Stains

Things are moving well with our crew.  As I type, the babies and I are in J’s temporary housing, waiting for our home closing.  Then we will get to check out the house, pick paint colors, and get to work!  Never one to miss out on an opportunity to paint (or to miss out on helping me) Papaw is on his way up as well.

So far, the new town seems very cuddly.  :-)

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Over the weekend, we were able to visit with K briefly as he and Mipa and Mima were fairly close by.  It was so good to see him.  I can’t wait until we are all together and HOME.

 

In the meantime, there is still plenty to do.  The twins have specialist appointments at their current hospital, and their NEW hospital in the next few days.  The Sabril is clearly not working well enough, and it even seems like Nolan is having more spasms.  I’m assuming steroids are a next step, it’s just a matter of when.

 

I’m headed out to drop paperwork off at the new day care, and then sign for our new house!  There may or may not be spit up medicine on my jeans, and spit up pedialyte on my shirt.  So to whomever I may see today…dont mind the stains!  Just a day in the life!  ;-)

 

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10 Months!

L and N are 10 months old! (8.5 months adjusted)

L:

Weight – 19 lb 10 oz (Holding despite an illness)

Food – Well…we’re doing the best we can.  Fluids have been a struggle with the ever-present illnesses.  I use pedialyte to help make sure he is hydrated, and I’ve tried VERY small amounts of sweet potatoes and bananas via syringe.  He seems to love bananas!

Accomplishments – Successfully keeping down stage 1 foods.

Likes – Holding fingers, being held.

Other – Wearing 12 month clothes and size 3 diapers. He is about 50% on sleeping through the night vs waking up once.

N:

Weight – 15 lb 2 oz (Despite a dip when ill, he is working hard to climb back and doing great!)

Food – Same as Landon.  I sometimes feel I spend my entire evening trying to get meds and food in my boys.  He also really seems to like the bananas!

Accomplishments – Stage 1 foods! 

Likes – Laughing at inside jokes.

Other – Wearing 9 month clothes and size 3 diapers.

Moments I don’t want to forget:

  • Smile parties.  All.  The.  Time. 

And now…their 10 month photos!  (Look who is awake!)

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Infantile Spasm Follow Up

We had a busy day today.  The babies and I started bright and early for a full day of appointments.

We had endocrinology lab. (we are now DONE with endocrinology unless new issues arise!)

Because the new spasm medicine, Sabril, can have side effects on vision, we have to monitor their vision more closely.  So the boys had a vision checkup squeezed in today.  I missed the last vision appointment so it was good to get to talk to her in person.  There have been no changes noted, although it is hard to assess already poor vision.  Both boys responded to light well, and seem to favor their left eye.   The best sign that they have vision is actually their avoidance.  If they didn’t like a flashing or bright light, they would look away.  Not ideal when it comes to trying to get them to focus on things, but they could clearly see something, and decided not to look at it.  They do seem to be legally blind…but that is not new information.  We discussed ideas for ways to engage them and encourage use of their vision, and increase the amount of time they can fixate on something.  Tracking may take longer to develop.  But even increased fixation is a good goal for now.

The main goal today was a follow-up EEG and discussion of their infantile spasm treatment.  It has been one month since each boy was admitted for their onset of spasms.  Today’s EEG was brief, but thanks to our good established baseline EEG, it was sufficient enough to allow us to look for changes.

Their SPASMS themselves seem to be positively impacted by the Sabril.  They are still having them daily, but the frequency and durations seem to be better.  Their EEG background did not improve though.  There were no notable seizures or spasms to discuss, but in general their brains are still dealing with constant noise.

For now, we are going to up their Sabril dose and give it one more month.  Then if we haven’t seen improvement, I’ll request the steroid treatment, or another idea from our new specialist on August 12th.  If we aren’t happy with their plan of attack, we can continue to see this Doctor as well.  In fact, I have his card and contact information, and may continue to bounce ideas off of him as we learn more about our boys.

The neurologist and I actually talked for over 90 uninterrupted minutes today.  That’s the equivalent of years in specialist time.  We talked about a lot of things, and he and I were both very candid.  While we are seeing a lot of abnormal activity on their EEG, we are NOT seeing much in the way of “normal”  brain activity.  That is discouraging.  But I have hope that if we can “clear the air” so to speak and help reduce the noise, we can allow their brains a chance to have more useful thought and perhaps a little more development.

The boys are surprisingly identical in their patterns.

In one discussion, about how far to go with treatment that can have negative side effects, risk/benefit came up.  He is concerned there is a small ceiling for the benefit we might be able to give these guys.  Meanwhile, some treatments come with known risks that might outweight the minimal positive impact we can have.  He also admitted if it were his child, that’s a chance he would likely take.  I’ll elaborate more on some of the steroid risks if we go that route.

When discussing the risk/benefit, he casually started a sentence with “We know they are at risk for early death”.  And I nodded along as if he had said “We know they could be left-handed”.

It’s weird to be in a place where we can discuss their short life expectancy so casually.   I wouldn’t mistake that for strength.  No, I think instead I have an increased tolerance for painful statements.  It still sucks.  And it still hurts.  But I think I’ve learned to let the hardest things go in one ear and out another.  I understand it. I am realistic.  But I cannot dwell on or obsess over it.  That would be a horrible waste of precious time.  It doesn’t help the boys.  It doesn’t help me.  So he and I nodded through those moments, then moved on to potential actions that can be taken.  Because we are still taking action, and hoping for the best.  And in the meantime, these boys smile on and continue to amaze me.

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The Hint

The boys are almost 10 months old, and we have a very busy few weeks coming up.  That means…it is time to start thinking about their FIRST BIRTHDAY PARTY.

I can barely believe I typed that.

I was torn between two themes, then like a perfect little sign, waiting to be noticed…two little onesies poked out from the aisle at Wal-Mart.

It is perfect.  It is fun.  And thanks to a few special ideas I have, it is a way to make this celebration bigger than two little babies.  A way to incorporate all of you.  In fact I’ll need your help.  More details will follow…but for now, here’s “The Hint”:

Little Heroes