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!

Belly Distension

Toby's belly is still a little bit distended; the medicine he's on is helping. We are also going to try to change his food a little bit to see if that helps. Please pray that it will help resolve the issue, so his lung volumes will be better. Another request is for the skin around his g-tube site to heal. Every few days it gets a build up of scar tissue and then we have to re-treat it, etc. We really need it to heal up. Toby saw the pediatrician today for some vaccinations; and he did well. He seems to be making some progress grasping both of his hands together and focusing on us. Developmentally he's behind; still can't hold his head up for an extended period of time, doesn't focus on an object, etc. We're definitely working with him on these things, so it's nice when you see small improvements! :)

Surgery and Myelomeningocele Clinic Appointment (Toby's First)

Toby't appointment went well today. He weighs 11 lbs. 7 oz. and he's 22 1/2 inches long, so he's growing as he should along the correct growth curve. His g-tube site is looking really good, but the stoma (or the hole - where the tube goes in) is getting larger and larger, so we're going to try a few more things to keep it in place so it won't enlarge anymore. We will see the surgeon again in a month. Friday is the big appointment = it's going to be a long day, but I'm looking forward to seeing the myelo doctors. (April 24, 2007)

Well, Toby had his first myelo clinic appointment today. We saw a physical medicine doctor, occupational therapist, physical therapist, urology nurse, pulmonary doctor, and developmental pediatrician. The visit today took 6 hours, and yes Toby, the nurse, and I are exhausted! Most of the doctors just completed initial assessments on him. The OT and PT gave us ideas for helping his development - helping him move his legs more, develop better head and trunk control, and focus more with his eyes. One thing he doesn't do is keep your gaze for an extended period of time; his eyes have a tendency to jump around quite a bit. I was also concerned that he had club feet, and he doesn't !! Yeah!! The pulmonary doctor was kind to come and visit us so we didn't have to set up a separate appointment. They did a chest x-ray and a blood gas. His blood gas came back great, which means the ventilator is doing what it should. The chest x-ray did show his lungs aren't expanding to their full volumes. The major reason for this is he tends to have so much air in his bowels/belly that it pushes up on his diaphragm, which pushes up on his lungs. Not good, so we're trying some new techniques this weekend to help keep his belly soft. His tummy was very large and hard today, and as he was breathing he was really retracting in, so that isn't a good sign. Please pray that the air in his tummy will resolve. (One cause might be because he receives his food in his small intestine, but I'm not sure what they can do about this). We will see. We will call the doctor on Monday to let him know how he did this weekend with some of the things we are trying. Thank you for praying. It's been a long day! (April 27, 2007)