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DiRN 
11:35am, October 16, 2009
I really don't drop off the edge of the world periodically. Things just get hectic and then they snowball and then...It's like ttwo weeks since I got on line.
So... What have I been doing?
Playing with Kylie, who is now up to 14 pounds 2 ounces, can turn herself onto her side and give a fair imitation of a rebel yell (Yee-haw!!!) Once the new pictures are released (they were taken last week) I'll give you some glamour shots. June 17th is the deadline for coming off the Oxygen. They turn it off, spot check her SpO2's (Sats) for 2 days and if she can hold her sats, she's lost her oxygen. The feeding tube... is another issue. She has to take at least 12 ounces orally (out of 24) for a week and then they can pull the feeding tube. Some days are great, others suck. She really has an oral aversion, and just like the rest of us, she has days when she is braver than others. We can't get really agressive when it comes to feeding, Believe me I know some tricks to get a baby to drink a bottle, but that would just worsen the oral aversion. So Patience and time for right now. They are talking about doing surgery to put a feeding tube into her stomach. Aubrey wants it.... I don't. Getting better to me is losing tubes, not having surgeries to permanently put another one in.
Dealing with Missy and Christian. Christian is doing good, now. 2 weeks ago we got a Civil Protection Order on Orlando, and then Tuesday was the hearing. It's funny, everything that I have that causes panic attacks, I have had to face this past month. Alarms, courts, police - it's all there! Anyrate, Orlando's family has more than a few dollars... More like millions. Missy is a high school teacher. Oralndo's family has hired this big old fat hippopotamus as a lawyer, big legal gun, right. And Missy has Brian, maybe 1 year out of law school. But Missy has a bunch of very mouthy nurses!!! (including me). The hippolawyer thought that he could steamroll this divorce to a conclusion on Tues. Wrong. He tried to give us this sob story about Orlando wanting to spend one night with Christian before he began his new life in VA. That doesn't happen until next month, he's going to Puerto Rico this weekend for vacation! There was more lies, downright foul mistruths and BS flying around that conference room. So...Anyway. We didn't agree to anything and the hearing is 6-16. Christian's doctors, nurses from Toledo Hospital, Social workers, and even a policeperson or two are ready to sign up for this fight. Money talks, but it isn't everything, and I do pray that the truth will win the day for us. Christian needs time and peace to get stronger and healthier. Orlando needs psychiatric drugs, bigtime.
And me, I'm doing pretty good. Just kind of going with the flow, seeing how it's all going to shake out. Maybe I need my head examined??? I know that a lot of nurses are adrenaline junkies, and I was one in my younger days. An adrenaline junkie likes it when things get a little hairy, challenging, out of control, because they like the feeling that they can put it back on track.
But...I thought I was over that...loving life in the slow lane.
I don't know. I am praying for you guys though and appreciate all your thoughts and prayers too. Love and Blessings, Diane
Comments
Oh, when I said Kylie had some glamour shots, she has some glamour shots. She has a white dress with yellow flowers and she's sitting in a white wicker chair with on a white lacy afghan...and then there's the shots of Kylie in a romper with Grandpa Al on his big old HOG! (Harley Davidson Motorcycle) She's a Stowers, you never know what we will do next :D. I would have added a dew rag but I wasn't consulted lol
DiRN
My Prayers are with you big time, hippo lawyer can take a jump back in the river, i hate dis trust and lies, but it seems thats what makes the world go round, these lil ones need all of us and ive talked with my pastor and all of you are on the prayer chain, every day, its funny , i start with one call then in comes millions, i love it, , i also think and wanted to tell you, that you and your nurses are heaven sent and dont ever forget that , im sure that these babies wont forget nor will their family's, so a big thanks to you,and your staff, love ya is their a post office that can be used for some gifts and such for the lil ones and maybe some funds help for the family's, maybe you could look into that, i have had many ask if they could sent things such as toys and money or dinner gift cert for the faliy's, also , and i liked this one, we have a stack of donated tickets for several parks such as dutch wonderland, and we would like to send them as well, dont have to be for the sick ones that cant go, but cold be used for the bothers or sisiters or freinds of the sick ones, plz let me know,
rene601
best of luck with all you do. especially with kylie. brave little soul, its amazing how well she is doing. truly blessed. i never heard of oral aversion, but it makes sense. i didn't know feeding tubes are permanent. xxoo
79pounds