I know I have been posting alot of pictures lately, but I haven't given much of an update. I think I am all caught up now, so I plan to TRY to give daily updates……
Lately, Miller has been hanging in there. We've had lots of ups and downs. When Miller is good, he's REAL good, but when he gets bad, he gets REAL bad, REAL FAST!!! When he gets fussy his oxygen saturation immediately drops! When it drops, he panics, which makes him even fussier. It is so scary to watch. He struggles to breath when this happens and stares at me with panic in his eyes. Breaks my heart. Basically the only way to calm him down when he has one of his episodes is to put him up on your shoulder. He prefers his DADDY to do this, but when daddy isn't around I will do;).
We have officially switched from Home Health to Hospice. That was a hard reality to face. My BABY is on Hospice?!?!?! That's just not right! Babies aren't supposed to die! Even though it was difficult to swallow, it has been a blessing. They are ALL so nice! From the equipment delivery people, to the nurses, chaplains, social workers, etc. Very, very nice people! Last week my mom, Rhonda and I went to tour the Circle of Life Hospice House. It is SO pretty and calming. Assuming we have warning of when Miller's final days will be, I would ideally like to be at the Hospice House. I just don't think I can handle having those memories at home. The thought of a funeral home coming to our house to pick up our baby is just unbearable! I don't know how I am EVER going to hand him over for the last time. How do you do that? You shouldn't have to! That thought gives me anxiety! I know I shouldn't be thinking those things, but you can't help it. I think about it every day. How will it happen? When will it happen? It is the weirdest feeling in the world to know that your baby is going to die. Planning his funeral. Having to think about what you will wear to his funeral. It's just not fair.
Last Friday we had a big scare. He had an "episode" while the Hospice nurse was here. She was extremely concerned with his grunting respirations. She stayed for a while, and after she left she called me back and said she talked to the doctor and they think it would be an appropriate time to go stay at the Hospice House. This translates to- they think he will die in a week or so. Are you kidding??? Already? I'm not ready! I'll NEVER be ready, but I just couldn't believe it was happening already. My dad was on his way up for the weekend, and I just wanted one more normal weekend at home. The nurse said she would have the doctor do a house call to give us peace of mind. In the meantime, we got him calmed down. The doctor came and was pleasantly surprised by how he was doing. That's what I mean when I say when he's good, he's GOOD, but when he's bad, he's BAD. The nurse caught him at a bad time, and the doctor caught him at a good time:). She reassured us that she felt comfortable with him staying at home over the weekend and we would reevaluate him on Monday. He did GREAT over the weekend. The nurse came on Monday and was really pleased with him. Yesterday he had an episode and seemed to be in major distress during his feedings (through his feeding tube), so we decided to call the nurse and have her come change out his tube. Since then he has been great! See what I mean by ups and downs;)! It's an emotional rollercoaster!!!
Last night we went to mass at St. Stephens Catholic Church in Bentonville. Patrick's boss, Mike Power, and his wife arranged a special service just for Miller. The Celebration of the Eucharist was offered for the intention of Miller. It was SO special!!! It was an intimate service held in the chapel. 
Today we went to a follow up doctors appointment with neurology. The doctor was SO nice and supportive. The people at Arkansas Children's Hospital genuinely care about their patients.
My friend/boss, Lisa Kelsey has been making weekly visits. She just can't stay away;)! Here is a picture of us with her precious daughters.
Victoria stopped in for a quick visit yesterday. She will be going to her sister's wedding in Florida this weekend, so she needed to come get some "Miller Time" before she left;). 
After mass last night the Woodruff's came over for dinner. We have done Taco Tuesday at their house EVERY Tuesday for the last 3 years. We all look forward to it each week. Miller has become a little less mobile these days, so we're improvising and hosting it at our house for the time being:).
Here is is getting some lovin from Papa.....
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