CT Scan Results

Toby had 2 Doctor's appointments today. We saw the surgeon about his g-tube. His site is looking pretty good, but he still gets scar tissue around it at times and we have to burn it off with silver nitrate. She said that it's probably something he's just going to have; it's in the genes we have!! :) We won't go back to see her for 2 months.

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.

Transitioning to Formula

Toby's doctor's appointment went pretty well on Friday. His CT scan we don't know much about except that the initial result in the computer said stable. His fontanels still don't feel right, so we will see the neurosurgeon on Wednesday of this week; hopefully we can find out more. His chest x-ray showed improvement in his lung volumes, which is great because the air in his belly has been much better also, which means his lungs have more room to expand! :) We are beginning to transition Toby from breastmilk to a formula called pregestimil (it's already partially digested, and hopefully easier on his belly), so pray that this goes smoothly and doesn't affect his stomach and digestive process too adversely. The boys arrived home safely, and had a wonderful time at Grandma's. They were so noisy tonight, and I wondered if they were extra noisy or if I had just gotten used to the peace and quiet this week! It is good to have them home; they always seem to grow up so much while they are gone.

Shunt Paranoia

Hello :) The older two boys are safely with their grandparents in Michigan. I will miss them, but it will also be a nice break for us - a chance for Toby and I to spend some time together. Please pray for a couple of things - one is when I have been straight cathing Toby we are getting some higher volumes, which means we may have to start cathing him more. Also, his fontanels haven't been very sunken in which could mean a possible shunt failure. He's not showing the normal symptoms - lethargy or extreme irritability, (amont others)..., but when they are babies and the fluid increases in their little heads, the bones can fluctuate with the fluid since they're not fused together yet. I'm a little bit concerned, so we may schedule an appointment with the doctor just to be on the safe side. Pray that his shunt will work again or that we will know if we should take him in.

May 22, 2007 3:44pm

We have a CT scan scheduled on Friday for Toby's head; so hopefully we will have some answers. We may not know anything until Monday, unless the radiologist would read the scan and see something unusual then he will contact the neurosurgeon. He is acting fine, and not showing the normal symptoms of a shunt failure, but I have been measuring the circumference of his head and it has grown 1/2 cm in 2 days. His fontanels still don't feel right, but we're not panicked. I just keep checking in with the neurosurgeon, so we will see what happens. We will also see pulmonary on Friday for a chest x-ray and a check-up. He continues to smile and charm all of us. Yesterday we had some professional photos taken at Target, and they turned out pretty nice. Pray we will know for sure if his shunt is working or not working and if we should take him in sooner than early next week.

Bring the Rain

Toby's doing well this week. We will see the pulmonary doctor next Friday for a check-up and a chest x-ray of his lungs to see how things are going with his lung volumes. My mom is coming on Saturday to take Conor & Garrett for almost a week, so she can spoil them, and give us a break. I wanted to share the words to a song that continues to come across our path and are very encouraging to us. 

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 

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. 

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.

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)

Feed Changes

Toby's belly is still filling up with air. At different points of the day it's bigger than others. The nutritionist called today and they are increasing the amount of food and calories he is getting. Now he will be on 38ml per hour over 20 hours instead of 36 ml per hour over 16 hours. She also seemed surprised that they were fortifying the breastmilk with similac..seems that when you feed a baby into his jajunum (small intestine), they need to have a type of formula where the proteins are already partially broken down. That news was a little bit frustrating. Oh well, we had taken him off of the similac on Monday anyway to see if it would help. It's made a small difference. Please continue to pray that this will get under control as it is affecting his breathing. His g-tube is also still building up granulation tissue around it. I'm praying that it will heal soon. A praise and huge answer to prayer!! We were approved for the Ohio Medicaid Home Care Waiver. A case manager is coming out next Tuesday to do a care plan. We're so thankful for this! I was also able to get out today and visit/serve lunch from our church to the school where I used to teach. It was wonderful to be able to see everyone. They have been so encouraging to us through all of this - sending cards, praying, etc. It was nice to be able to give something back for a change. Oh yes, and we have a night nurse on Sunday nights now too - she's the same nurse that does our Tuesday and Thursday nights, so now we have 5 nights covered, which is all we want for right now. Hopefully we will get more sleep now!! Good night!