This Gig Ain't Easy

You can try to imagine and head the warnings of those that have travelled this way before,
but you still won't be close to understanding how tough this gig is.

Being a parent may very well be the most rewarding job I've ever had,
but it too is the most challenging.

The hours are long.
The struggles are hard.
Sometimes you feel like you're carrying the weight of the team.
The consequences are unimaginable and you often wake suddenly in the middle of the night, startled at their enormity.

But a mere thirty seconds spent in a dim, sweet nursery
rocking that precious, sleeping piece of you
makes it all seem small and petty.

What could be better?

No matter what has come before this moment,
no matter what is to come in the future -
so unknown, so scary, so intimidating -
it is all worth it.

A million times over.

Long Overdue Post

So much has happened since I last posted I'm not sure where to start or what to include.

Bryce got sick - he got a cough that turned into pneumonia and had to have three medications daily including an inhaled steroid as often as every 2 1/2 hours. But it worked and after a few days he began smiling again. And we didn't have to go back to the hospital this time!

The pulmonologist discontinued Bryce's oxygen (as long as he's healthy) so we no longer have to fight that battle nightly. What a blessing.

I've been feeling pretty crummy too. I'm still not sure if it's severe allergies or Bryce giving me whatever he had since he always finds a way to cough directly into my face. The headache is sharp pains in my temples with a constant tension but the sore throat was the worst and is now thankfully gone. I hope the headache is also on its way out.

The last thing I don't want to talk about but feel a need to is this. We were out as a family on Sunday morning when we ran into the grandmother of one of Bryce's fellow NICU babies. We were shocked and saddened to learn that baby Grayson is no longer with us.

While Grayson's problems were very different from Bryce's we connected with his parents over our sons' trials. I can't get them or Grayson out of my mind. The last time I saw Grayson in person he had returned to the NICU while Bryce was still there for a broncoscopy on the same day that Bryce had his. I stood by his bedside with his parents while he slept of the meds and I completely understood what they were feeling.

Now I have no idea but my heart aches for them.

We are so grateful to have Bryce. We know first hand and all too well how fragile life is. He is such a miracle. Here he is today, smiling as always for his daddy.

Finally Feeling Better

And lookin' pretty darn cute too!
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Going for a ride

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Good News!!

So sorry to just now be updating the blog! We got good news last week from neuro - they had the neurosurgeon review Bryce's MRI and he said that he was very happy with it. We still have our regular follow up in June but if that looks good they very well might not ask to see him again for a year. Their goal has always been to get him in only once a year for regular check ups on the shunt's function.

This week Bryce had his monthly assessment with his physical therapist. She went over the expected motor development milestones for Bryce's corrected age with me. It was quite enlightening. He's doing great on his gross motor skills. Some examples of gross motor skills are: maintains balance while sitting (which Bryce doesn't do yet but is making great progress on), extends arms and legs off surface while laying on stomach and holds head in alignment when tilted from side to side.

On the other hand, his fine motor skills are quite lacking. Though Caleb and I are convinced that he's heard us saying this quite a bit in the last few days and has begun already trying to prove his parents wrong - already. Some examples of fine motor skills are picks up rattle (nope - couldn't care less about said rattle most of the time), grasps and holds cube, engages fingers in mutual touching while lying on back. The last, with the fingers, Bryce has been doing for awhile now but most of the finer motor skills are where he's lacking.

His therapist explained to me that when Bryce first came home the goals for physical therapy (PT) vs. occupational therapy (OT) would have overlapped significantly. But as Bryce grows each will encompass more and more separate tasks. She suggested we get Bryce into OT a couple of times a week to try to get a head start on this.

Of course, with Bryce's history of IVH (brain bleeds), hydrocephalus and possible seizures we expected there would be lots of therapy in his future. And I'm optimistic that with all the therapy we can get him into we'll be able to positively effect his outcome. Whatever an outcome might be.

So if I have to spend every minute of my day waiting for a therapist to call us back, schedule this, that or the other, or calling to pester some home health company into doing their job than I gladly will.

The other recent event, the one we are most excited about, is that Bryce had a visit with the pulmonologist last Friday. He said that they've already seen a huge drop off in flu and RSV for the season so we can start gradually taking Bryce out around people. Hallelujah!

Caleb and I just love and adore Bryce so much and we want to show him to the world! Not to mention we're feeling a little, okay a lot, like old hermits. But as the weather grows sunnier and warmer the risk reduces and Bryce is getting more and more interested in what goes on around him. It's all very exiting!