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!

Not Good News, But Not Bad News

A couple of weeks ago when we were in the hospital with Bryce the doctors did several tests to check that Bryce's shunt wasn't contributing to his illness. It was a hard realization that day that my poor baby would never have a routine sick visit. No doctor is ever going to want to be the doctor that missed a shunt malfunction. There's just too much at risk. Unfortunately for our poor baby Bryce this means never a reprieve from a shunt xray imaging series, a head CT scan and quite likely a spinal tap.

Like I said, not an easy realization to come to.

But today it may have paid off. The doctors at the hospital let us bring Bryce home only with the understanding that we would follow up with neurosurgery today. And so despite a ridiculous snow storm that went on for hours and hours we ventured out to hear what neuro had to say.

Bryce's head circumference has jumped up 2.5 cm and his spinal tap showed excess amounts of protein in his CSF (cerebral spinal fluid, the fluid of which excess is shunted via his shunt into his stomach cavity to be reabsorbed into his body). The problem with this is that his increased head size could be due to enlarged ventricles. And the extra protein, though not alarmingly high, could be a sign that his shunt will clog again soon.

But neuro couldn't help but see that Bryce looks amazing. There's no denying that sideways grin, the ever moving legs and the constant babbling. This is by no means a cranky baby, which is always the first clue something is truly wrong.

So they decided to review the CT scans from the hospital and compare them to theirs which were taken on our last visit back in December. There was a change noted that is of concern. I suppose that if Bryce were showing signs of not feeling well they would be more worried but since he's obviously happy they have taken the modest road. Which I am ever so grateful for.

So tomorrow Caleb will take Bryce in for a fast acquisition MRI. He had one done at the hospital as part of his discharge orders from neuro so they'll have something to compare it to. And then they said they'd call us in the next few days to let us know what they find.

I simply can't imagine another surgery right now, especially a shunt revision. These procedures may be a definite part of Bryce's life, wether we like it or not, but that doesn't mean I have to attempt to deal with it any sooner than the last possible moment.

So for now I'll simply relish in the joy of a happy baby bath in an unimaginable snow storm in Austin: