"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Wednesday, November 28, 2007

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.


Anonymous said...

Erin, I thought I recognized that prayer-it is one I used to say daily at mass. I will begin again saying it daily for Connie. I really miss both children - after being out of town 10 days, it's the pits to come home with a bad cold and not get to see them. I should be okay in a day or so with a face mask to see them. Let me know if and when you decide to pull the tube for one day.
Remember, God is with you every step of the way on this worrisome journey and Dad and I are here for whatever we can do to help.
We are so proud of your strength and faith - youare an inspiration to many, Love, MOM

Anonymous said...

I talked with my mom this morning and she said she saw you after the parish mission the other night and that the entire church prayed for Connie. I know that she feels honored being able to offer up to God prayers for Connie's continual healing. Praise God that his eye test came out so well, I'm sure that's a relief. I'm sorry to hear that there are still struggles with his vomitting and swallowing. We'll continue to ask God to place his healing hands upon Connie's body to help him swallow and be nurished. I wish there was more I could do, but for now storming Heaven with prayers is my objective! I think of you and your family often and send you huge hugs from Omaha.

Love to you and the family, Caryn

Shari said...


I am so thankful for the small miracles. I have been praying for Conway so much that his oral aversion would be taken away miraculously and that he can eat again. And no more tube! The new pics are wonderful. May I ask a question? Do you have a picture of Celeste you can put up? I have never seen her and would love to if that's OK?

Loving and praying from afar!

Shari :-)