Wednesday, May 30, 2007

CT Scan Results

We also saw the neurosurgeon. His CT scan looked great, but he still wants to keep an eye on Toby's head. Sometimes a shunt can be malfunctioning and it won't show up on a CT scan. His fontanals (or soft spot on the top of his head) were bulging for 12 days. He also seems to have a pocket of fluid above his myelo site on his back. (The myelo site is where his spinal column was splayed open, which they closed the day he was born.) About 2 days ago, Toby had some major dirty diapers - like 4 in twenty minutes, and since then his fontanels have been soft and more sunken...so there is something to the idea that when his bowels are full of air they can't absorb the fluid from the shunt tubing (which ends in his bowels and is where the fluid drains from his head). The doctor also mentioned that a viral infection or urinary track infection can display symptoms like a shunt failure, but actually not be the shunt. He doesn't have a UTI, but could have a viral infection because he's been running a slightly elevated temperature and had lots of dirty diapers. Bottom line, The doctor wants to stay on top of things, and we will see him again next Wednesday for a CT scan and to be checked. He still is acting great, and like I said today his fontanels felt great; nice and soft and sunken in.

Saturday, May 26, 2007

Transitioning to Formula

Sunday, May 20, 2007

Shunt Paranoia


Friday, May 18, 2007

Bring the Rain

Bring The Rain 
Artist: MercyMe

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy is the Lord God Almighty 

Wednesday, May 16, 2007

CMG & EMG

Toby had CMG & EMG tests yesterday. They test his bladder and how high the pressures get before he would void urine on his own. His pressures were a little bit higher than they would like, but overall it went pretty well. We still have to straight cath him once a day, and just watch his volumes. The urologist wanted to put him on preventative antibiotics, and I asked that we wait on this until it's absolutely necessary since he doesn't have reflux up to his kidneys. He is okay with this, but they will test his urine monthly for bacteria to make sure he doesn't get infection. He continues to smile, kick, and move his legs quite frequently. 

Friday, May 11, 2007

MRDD Evaluation and Testimony

Toby had his evaluation yesterday for Occupational/Physical/Speech therapy. The gentleman that came from Franklin County MRDD was very nice. He will write up a report and send it to us with recommendations, and then hopefully Toby can start receiving some therapy soon. He is really starting to smile at us now. He even smiled at Aunt Lynsey who was here visiting for a few days. Toby weighs 11 lbs. 12 ounces now, and the dietician decided to increase his food amount again because he only gained 5 ounces in 2 weeks; not quite as much as they would like. He's now getting milk over 20 hours at 36 ml/hour. Another note - they took blood and did a test on his electrolytes just to make sure that his sodium was staying level while just being fed breastmilk with no additional fortifier, and it was 136..perfect!! If you remember his sodium had dropped down at 3 1/2 weeks of age, and we're still not sure why. I am glad they checked it just to be safe. Last night and this morning I gave my testimony about God's faithfulness through everything with Toby to our moms2moms group at our church. My friend Erika sang the sang "Held" by Natalie Grant, and we showed a slide show of photos of Toby. It went really well, God truly spoke through me, and I hope and pray it encourages everyone to trust God in good times and in bad.

Saturday, May 5, 2007

Belly Issues and Urology Appointment

Toby is still having some issues with his belly; we're waiting to hear back from one of the doctors on Monday to see if she has any ideas. If she doesn't, they'll probably refer us to a gastroenterologist. Today we were able to all go to church for Conor's cubby picnic (He's apart of the Awana program at our church). It was nice to be there together as a family and support Conor. Toby did well, and we even managed to make it there on time! :)

The issues with Toby's belly are slightly better. We will be seeing a GI doctor on June 15th. Seems kind of late to me, so hopefully something will happen and we can get in before that. Next Tuesday we will see the urologist for the first time. We saw his nurse at myelo clinic, but not the doctor. They are going to perform urodynamics testing to test his bladder function. This is very routine for babies/kids with spina bifida. Pray that this goes well, and that they won't need to put him on antibiotics. They usually put these kids on antibiotics as a preventative measure so they don't get urinary tract infections/bladder infections, etc. Thankfully, his bladder seems to be the one thing that works well on him, so we're only straight cathing him once a day, and getting very low volumes. So far the doctor has said it's okay NOT to put him on the antibiotics; they'll just test his urine monthly. I'm okay with that!!

It's been beautiful here in Ohio - so Toby has been out with the boys each day this week! Monday and Tuesday we had a picnic outside, and Toby slept in his baby seat. Today we went to the church for a picnic and a play time. Toby has no idea, but I think it's good for me and his brothers to feel like we're doing things as a family. (May 9, 2007)