please keep Gage in your thoughts.....

Today I come to you with a request for prayer for Gage.  He has had a tough time over the last several days with an increase in the number and severity of his seizures.  Today Beth called me and told me that she had spoken to Duke Neurology MD and they had increased his Phenobarbital (which the MD really did not want to do on Dec 17) and is allowing Beth to give 2 valium Diastats if Gage does not respond to the first.  Gage used to be knocked out asleep after one but these last few seizures Beth said Valium is not slowing the seizure down lasting up to 20--minutes.  If Gage continues to have hard seizures in 5 days he will be readmitted to Duke and testing etc will occur.  He is presenting with the tremors-shakes that are new neurologically. These seizures are hard on Gage's little body, and Beth with everyone at work etc... They are also hard on the other kids and ML and everyone who has to witness him going thru this, but GOD IS IN CONTROL. I have to repeat this, and as I have tears stream down my face and wonder .....I know that the Lord is with him, that he knows our hearts are heavy and Gage is his child. The Lord promised me he knows what I need and Gage needs before I ask him and even now as I wonder what to ask for he knows what I need and is preparing a way for me to get it.   So please pray for Gage and his family and Beth, and the physicians. Love, Aunt Kim 

Our last trip to Duke!!

Merry Christmas everyone, and God Bless our Savior.  Gage, Beth and I made the Duke trip in record time on December 17.  This was not a planned visit for any of the MDs we were scheduled to see-Gage had "issues" and Beth and ML wanted them addressed before the Holidays.  Gage had an issue with his Gtube where he was having granulation tissue build up around the insertion site.  Which means skin was growing "building up" and initially when Pediatrician was asked to address it--it was pin head sized and very easily manageable.  In home care we used to touch these spots with silver nitrate in the home with MD orders-no problem.  Well, the Pediatrician evidentially was not in class that day of med school. (Aunt Kim is not bitter). She told Beth it was nothing to worry about, and when I kept Gage again over Thanksgiving it was larger. Well, the Duke MD walked in the room on Thursday and guess what---silver nitrate. She asked and Dr Rice(surgeon chief) asked who the Pediatrician was and why she couldnt handle it.  Maybe Aunt Kim will shoot off an article to her on silver nitrate use with gtubes and granulation tissue and how it has to be dealt with since this has been around since the stone age.......My name is already well known and I am sure loved in that office so I might as well start off 2010 with a bang.  The point is had we dealt with this smaller Gage would not have to suffer like he has to now with burning the thick granulation off every 3 days and peeling away this skin and bleeding around site and oozing.....it makes Aunt Kim want to silver nitrate that Pediatrician's lips and tell her "it's nothing to worry about it will be better soon".  I know I will have to answer for this later on.....but if I think it I might as well say it. Neurologist Dr Gallentine who is wonderful saw Gage and medications were changed a little. Meds were changed to accomodate is new weight gain. Gage has had several hard seizures again with Diastat Valium rescue needed but no rescue breathing.  He is exhibiting different types of seizures and tremors which we talked to Dr Gallentine about. We see him again in January.  Gage threw a fit in the office- it was Beth's side of the family because the Elliott's (ML, my brother) we do not act that way in public. He rolled and flipped and cried and Beth threatened to beat him.  Aunt Kim finally took him and patted and talked to him until he calmed down. For a little while.  We will evaluate meds, progress in January-and discuss the plan for Gage as he shows new and increased seizure activity. We had ridden the elevator so much in the childrens hospital we got off on every floor at least once-off and on.  It is amazing to me just how many sick kids there are and the parents who look as frazzled and/or as worried as we do.  You look in these parents eyes and know the pain, worry, suffering they go thru.  That something as easy as going to rest room becomes an operation that is planned out.  You have Kangaroo pump feedings planned, medications to be given in waiting area if the MD is late, a notebook full of HX, meds, scans, labs etc....other MD involved in care phone numbers.  It is a whole different world but one these parents and CGs share.  You see children as infants--who are just starting this journey of MD appts, tests, hospitals etc;  and then the older children or the sicker children with ventilators/tracheostomies and we say "thank goodness, Gage hasnt had to have that yet".  You say a silent pray as tears well up in your eyes, and you divert your face as they pass.  But there is strength on that floor-Good Lord dwells there among those children and their parents and one day all those kids will be in heaven with him whole and without sickness. Praise the Lord.  Merry Christmas. Those two words mean so much the last two years and especially this year. We had Christmas at Papa's house.  Thanks to a very special lady at work and her 2 daughters Gage and his family will have a special Christmas. The adults do not exchange gifts at Papa's, but we all buy a gift for the nephews and nieces/grandkids. My Christmas moments this year are of Gage lying with Erica on the couch singing;  Gage sleeping in Aunt Lisa's arms when no one else could get him to sleep;  Elliott and Aunt Kim dancing in front of the tree to Jason Aldean's Green Tractor song; Ryan and ML outside looking like mirror images of each other thru the window..... and the love and trust I feel for the rest of my family knowing that I would not have been anywhere else that day. The Lord blessed me with great Dad and Mom, Sister and Brother, Dog named Hatteras-Hattie, and oh yes, Chuck my husband.......who loves me just as I am. Merry Christmas to all of you and look around and collect your memories for this day