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."
5 comments:
I have seen the miracle in my own 1year old grandson whom was suppose to have not made it through liver cancer. even if he did, the side effects from the 18 month to 2 year long chemo sessions were supposed to have devistating side effects such as deaphness, blindness even retardation and death.
3 weeks ago on a Tuesday after only 3 months of chemo, the doctors removed his tumor, 1/2 of his liver and his gull bladder. By Thanksgiving he was fine. No more meds for pain. He played ball on the floor with paw-paw and laughed and even got in trouble by Daddy for mis-behaving.
He had one precationary chemo treatment followed by a biopsy that now shows 0 spores of canser. He has one more follow chemo treatmen next month and he is done.
Praise God! This can and will happen to Conway too. The power of prayer has been witnessed and I know it will again too.
I will be praying for him at the top of my prayer list.
Greg's friend Dan
Dear Erin and Greg,
I will certainly join in the prayer of John Gabriel. He is a "brother" (Vincentian), part of the Daughter of Charity/Vincentian family. I have known this prayer for a long time, and it is very strong. My heart is very much with you all, and with dear little Connie, as he (and you) go through this very trying time. Persevere--God can never forget you. And HE cares. With love and prayers, Sister Josephine
Erin:
When our son was six weeks old he got critically ill. I remember the days of praying for a miracle. I will be doing just that from now on. The miracles came in steps and were small to begin with and then the big one happened. I know and believe this can and will happen for you.
Keep the faith.
Shari
Hang in there sister. Feeding issues are so frustrating because you encounter them all day. In open heart surgery the vegal nerves are retracted and this causes digestion issues. It does resolve.
Johnny had this problem from birth to six months. I believe that the ng tube does cause some reflux and digestion issues. Also, Johnny vomited every time I added calories to breast milk. If he just drank straight breast milk he could keep it down. That was more calories than vomiting.
Please call is you want to talk. I am an expert and would love to help. Sarah
Erin,
I am praying so hard for Connie and that he is able to be healed. I can't imagine how frustrating it is when you feel you are doing all you can. But I'm confident that time, prayers, doctors and a lot of TLC will help Connie.
I admire your fight to keep looking for ways to help him. He is your little miracle baby and I know he is trying his best to put an end to all of this too.
I have Connie and your whole family in my thoughts and prayers every day. And I'm sure relief is close by.
Stay strong and keep up the fight!
Much Love!!
Kim Froehlich
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