Monday, February 22, 2010, 9:54 AM
Aunt Kim is home today and has been this week with SHINGLES. OK, I went to the regular dentist on Friday the 12th with tooth/jaw pain and was set up to have 2 root canals and a crown performed on Monday 15th by a Surgeon. Well, I took antibiotics all weekend and I am terrified of the dentist. My dad took me to the dentist.  Papa was giving me Pep talks the whole time. Well, they take x rays and as soon as the Surgeon looks in my mouth-shingles diagnosis. He rules out the need for root canals-but still need crown b/c one tooth is cracked. The funny part is I walk out and my dad is thinking I am chickening out until I tell him it is shingles. It is not contagious to Gage I asked these MDs and my favorite pediatrician (not Gage's current ones). I cant kiss Gage or Chuck or swap saliva--yuck.  Gage still has pneumonia, and his lungs sound horrible. He has a horrible cough at times and we are still doing nebulizers, inhalers, but the secretions are clear. Fever is a very LATE with sign Gage. I really think with his DX he has temperature regulation issues b/c he hardly ever (until the end) runs a true temperature.  I had agreed to keep Gage for Beth and ML to go to seminar to help them with services in Greenville. Chuck and Erica were my helpers, and all I did was the feedings and medications. He arrived at 515pm and left almost 845pm and slept almost the entire time on Hattie's (my 80lb Lab) bed. Gage loves her bed-I wash the cover, put quilts over it and elevate the top so it is like he has bed with head elevated.  Hattie sniffs at him and lays next to him and then ignores him.  Chuck and Erica handled the contact things with him-that was Hard for me.  Gage only gets about 1/2 his 8pm feeding due to his Jenny Craig plan-haha (lost 3-4 pounds) but it truly is sad when you draw up all these meds 7-8 syringes at least and nebs etc for "bedtime".  What a blessing you have when you struggle to get a child in the bathtub, in pjs and in bed and that's it.....I don't downplay this but I know there are others out there who do so much more than we do for Gage. We should Never take it for granted how hard or easy something is... Beth filled out one of these questionnaires and it continues to bother me that what she would like to do would be have a weekend. How simple does that sound to all of you. I know that even with kids with no problems you have to arrange sitters-times, clothes, pickup times etc...but look at Gage and others like him.  God knows what he is doing with mother's, and the pressure they are under day in and day out.  The Unconditional Love of a Mother. I do not have a child. I had Sammi and I have Hattie and when I went to Biloxi I packed her up and sent her to Lisa's with instructions and totes filled with her things. God looks after mother's he has to b/c they have to be superhuman to do what they do mentally and physically.  Someone a Jamesville school recently asked me how Gage was and told ME what a blessing I was to him-NO WAY. You see they or whoever reads this doesn't get it. Gage has and always will be a blessing to me and my family. Each of my family is touched in a different way by Gage's disease, and we each handle it in a different way. We are not perfect. We fight about what we think is right-we are very vocal in our family. Anyway.... Today is Monday Feb 22 and I just realized I didn't send this....Aunt Kim and shingles wow affecting my brain. We go to Duke Wed to see the new nephrologist and to have an ultra sound so we will be speeding from the Childrens Hospital to the Main Hospital with Gage kicked back in his new wheelchair. We are experts at the escalator now....On Friday we return to Duke at 8am (leave home 430am-5) and Gage hopefully will be the only one sleeping on the way up there. He will have a 6 hour EEG brain scan to qualify him for the Duke study. So please pray for us this week for travel mercies and Gage for the outcomes of these tests will determine if he can get into the medication study at Duke for new seizure medication. Beth and I will sing that old familiar song " On the Road Again"......love Aunt Kim I hope I sent it this time. 
*BETH*