Friday, January 23, 2009

Packing Up & Going Home!

There isn't much more to say than this......................We are going home discouraged, baffled, bewildered and down right disappointed. We had hoped for so much more than this for our trip, but for some reason this was not our time for answers. We appreciate everyone's prayers, encouragement and messages. We have heeded the advice given and we will follow up with the Wisconsin doctors over the phone. We just don't have the energy to chase another path right now. Randy has to turn around and fly back out to work in California as soon as we get home, and Lori just doesn't have the strength to deal with Connor and all the doctors on her own if they were to go to Wiscconsin. Plus, it is time to get home to the other kids and to nursing Alex too. We tried to make the most of our stay here and we will post a lot more pictures once we are home. But for tonight, we must find some rest. Today was just exhausting not getting anywhere with the doctor. It literally sucked the life and hope right out of us. In a nutshell, we were told to possibly change Connor's formula, slow down the rate of his feeding and add Benifiber to his formula. All the way to Minnesota for that??????????????? Go figure. Poor little guy is in so much pain from his g-tube site he just screams. It is raw, red and bloody and even that was not cause enough for concern or intervention. We must now go about the business of figuring things out on our own. I don't know how and I don't know why, but this seems to be the case.

Frustrated and Tired.
Lori

6 comments:

Sky said...

Lori Im sorry, I know you guys were hoping for so much more. Im confused that they wouldnt want to try to fix his gtube site, it sounds so very painful. if its ok with you, my SMA family online deals with GI issues and gtube site issues all the time, some of them might have some information or insight on this, is it ok if I ask them? let me know Lots of hugs and loves Have a good flight home Sheila

Heather Bennett said...

Lori,
I am so sorry this has turned out this way. Please do not lose hope. You are surrounded on every side by warriors, lifting up your arms and praying with you for answers. God KNOWS!!!!! I pray tonight that he will hold you all in his arms and give you peace and rest. I love you!
Heather

Amy Mason said...

Hello sweet friend. I have been praying for you and for your amazing son. I'm so sorry for lack of answers! Arrrr- frustrating. Something came to mind however about the g tube. Isabelle's used to get red, raw and puss covered, super painful. We really helped her and the healing process by a huge tip from a home health nurse. Call me if you are interested in trying it!
360-510-9522
Love you, Randy and all the kids!

Anonymous said...

Lori,

I am so sorry that things went the way that they did.

I was able to talk to Dr. Rudolph today in Wisconsin. While he was sad to hear about your experience, he did say that they would be more than happy to see Connor and help in any way that they could.

Keep in touch and we will keep praying. "A way will open", as a friend of mine says. Give the kids a big hug from us and have a safe trip home.

Hugs!

Steph and Christopher in IL

Richele said...

Sometimes there is nothing we can say and nothing we can do except give our disapointments to God and let His love wash over us to give us the comfort and the strenght we need to go on. Sorry this trip didn't turn out as expected. Praying for you both to once again feel God's amazing peace concerning Connor. Know that there are many of us out here who care and stand with you at times like this. Be strong and continue to pray. Love always protects, always trusts, always hopes and always perseveres.

Tammee Angel Michael's Mom said...

Lori, Randy and Conner-
I'm so sad to hear that nothing was found and Conner is in pain. May God give you peace and some guidance during this time. It has to be tough watching Conner be in so much pain, my heart goes out to you and him. Be strong and I know Conner will be tough. Safe travels home. Lots of Love, Tammee Howie Austin and Angel Michael