Renewed Hope!

First, there are a couple of new pics to the right. I report tonight some good news and a renewed sense of hope. I was doing "homework" with him and he took some watered down baby food through a syringe. When I say some, I mean about a total of 6-8 mL. He had some great swallows and with a thicker but not too thick substance, he didn't drool out so much. He didn't gag once! Then for his feeding I gave him the rest of the thinned baby food through his tube because I've heard that some kid's reflux gets better when they have some more solid food on their tummy to weigh it all down. Granted, it wasn't true solids because it had to be thin enough for the tube, but it was thicker than the normal milk he gets so that's good. Then I used some rice cereal to thicken his milk and put that through the NG also. He gagged a couple of times but nothing came up!! I'm so excited. I didn't use the pump, because I was afraid it would clog, so it was pretty time consuming to give him syringe-ful after syringe-ful over about 30 minutes--but it was worth it if it helps him keep it down. If he does well again at his next feeding I will call the doctor tomorrow and see if his feeds need to be adjusted because of adding solids. Just pray that he digests it fine.

Small Miracles

Sometimes in the midst of the daily grind, it is easy to overlook the everyday miracles. At least for me it is. Yesterday we got good news and bad news. One prayer answered and another one that God's timing just isn't ready to take care of yet. Dr. Tychsen's office called and said that Connie's eye testing last week showed his eyes are working "pretty well together" and he doesn't want to do anything further at this time. This is fabulous news. God has spared Conway's sight and we are so thankful. When we go back in May they will hopefully be able to do some additional diagnostic testing. They mentioned measuring the muscles or something like that. The older the child gets, the more they are able to tell. We still are asking for prayers that he will not require glasses at that time.

Dr. Brady called back. She said that if Connie were to get the surgical G-Tube that his pacemaker will have to be moved to the other side--yikes! So much for a 24 hour hospital stay on that one. She is going to talk to Child Development to see if we can't move up the Swallow Study since he is going backward and getting more averse to oral stimulation. Once we find out if it is safe for him to eat, we may try to pull the tube completely and see how he does. The downside is that we only get 24 hours to give him a trial run. If he doesn't eat enough, we'd have to put the tube back in. I asked about the super high calorie fortifier and she said, "No". She said that with the meds he is on he needs more "free water" and that 4.5 oz of liquid wouldn't be enough. Doubtful he'd be able to drink 20-30+ oz in a day. Right now he can't even swallow 1/15 of an ounce. She did say that we could let him go without the tube all day and then drop the tube every night and give him most of his calories overnight. We are continuing to pray for a miracle that he will be able take enough orally during the swallow study and continue to improve dramatically so as to actually be nourished by what he takes orally.

Praying for a Miracle

Since the middle of last week, Connie seems to be throwing up more. Basically every time he is due for a feeding and he's not sleeping, he throws up and now he's even waking up to throw up some of them. I put a call into the GI doctor but haven't heard anything back yet.

The dietician from First Steps came out today and we discussed this recent development and I shared my concern that he seems to be going backwards a bit as far as the oral aversion is concerned. He is less interested in doing oral practice and is back to shaking his head "no" most of the time I offer. Child Development warned that he may be getting to the point where he will associate even sitting in the high chair with throwing up and gagging and not want to be there. Long story short, I'm going to ask the doctor if there is a point where we can pull the NG out and try to get him to take something orally. The problem is that it is unlikely he will take enough to sustain him, let alone make him grow. There are products to thicken liquids (for those with swallowing disorders) and those that add a large amount of calories. One such product contains 330 calories in just 1.5 oz. of liquid. If we could just get him to drink about 3 a day (a total of 4.5 oz.) we'd be great. Then there's still the problem of getting him to take his meds orally. Who knows. I just know that I'd like to avoid the G-tube surgery at all cost but he needs to lose this NG tube ASAP. The fact that he's puking before a feeding is even all the way in (sometimes before it is even 1/2 way in) leads us to believe it is not an intolerance problem but a gagging one. All this blabber leads me to what I really wanted to post about. Tonight at our parish mission, the visiting priest passed out prayer cards with the Vincentian Mission Prayer written by St. John Gabriel Perboyre, C.M. He told about how so many miracles have been reported from those who prayed this prayer daily. Greg and I are going to start praying this prayer daily for healing for Conway that he will stop this vomiting and relearn to eat. We would like those that are so inclined to do the same. The best part of the prayer is that nowhere in it does it ask for a miracle. I think you'll love it. Here goes:
Divine Savior, transform me into Yourself.
May my hands be Your hands.
May my tongue be Your tongue.
Grant that every faculty of my body
may serve only to glorify You.
Above all, transform my soul
and all its powers,
that my memory, my will and
my affections, may be the memory,
the will and the affections of You.
I pray You to destroy in me,
all that is not of You.
Grant that I may live but in You,
and by You, and for You,
and that I may truly say with St. Paul,
"I live now, not I, but Christ lives in me."