Tuesday, May 26, 2009

No pain meds, you know the good ones...

We officially ran out of pain meds for Lillian last night. I gave her the last dose at like two or three this morning. The smell is still there. I did call the surgeon today just to check if that was normal and am waiting to hear back. She seems to be doing well overall except for the dreaded feeds. Ugh....it wears me down, seriously, I cannot even imagine the toll it has on her. I hate to puke...I cannot imagine puking EVERY SINGLE time I ate. blech

Interesting enough, got a letter in the mail today from Riley surgery notifying me that her surgeon would be out of town the week following her surgery and if that concerned us we should call their office to reschedule....are you kidding me??? I took this opportunity to call and tell them we were no longer in need of their service.

She is completely obsessed with going outside. She thinks she should be out there if anyone is out there. Let me tell you how much that annoys the girls. They have a little tolerance for messing with her outside, but it quickly runs into "their" time. I took little missy for a walk today and we went to see the goats, but they were not in the field. (friendliest bunch of goats you've ever seen)

Another new experience today, Lillian pulled the Wizard of Oz DVD out of a box and kept shaking it at me and pointing to the TV. I put it in, quite shocked bc she is really not too much a tv watcher. She did get interested in it, as much as a two year old is anyway. Then tonight, she did it to me again...I said are you serious??? She shook her head yes at me very slowly several times as if to say, did I stutter??? It was funny.

I spoke to a friend who is a speech path today and she told me that most kids have to have multiple surgeries on the palate....UGH.....that was depressing information. Sometimes I wish they would just tell us these things up front so I'm aware of it. So it doesn't feel like a bomb landing on me. I have felt like that many times with her. For instance, the time she had blood come out of her trach...I was buggin'. When I called they were like so nonchalant, oh yeah, that's normal. Don't you think you might ought to tell a parent, that someday blood may come out of her trach...it's not a big deal, it's expected...do they tell you that in training....NOOOOOOO.

I feel heavy hearted today. One day at a time...


  1. Oh, my heavy hearted friend. You've got the right idea... one day at a time.

    Marissa is obsessed w/ going outside too. She even points and says "sunglasses" (the best she can). Problem is, it has been so rainy and cold here the last week, we can't go outside without major bundling up, and mama's just not up for that! Hopefully summer will arrive here in beautiful Colorado soon.

    Wizard of Oz huh? The girl's got great taste, that's a classic! And one of my childhood faves!

    Thinking of you always.

  2. What is this fool doctor's name at Riley? I wanna call up there and give these people a piece of my mind!

    Have they NO care for THE CHILD????!! ARGHHHH!! :D

    I told you I read that those are usual multiple surgeries, but I'm VERY confused as to why THEY didn't tell you that...it's just WEIRD. Maybe that's a good question to ask the surgeon at the check up!

    Do I need to make a list? When will that be?
    Do I need to go with?


    Put your heart in God's hands and He will carry it for you lovely Seestore!! :D

    Keep it real!

    (I've obviously had WAY too much caffeine today!)

    P.S. Have I mentioned how much i HATE that word verification because I really, really DO!

  3. Praying that God will give you the strength and encouragement you need to cope with this difficulty.

  4. Hang in there Michelle, you're doing a great job. With every post Lillian is making more and more progress.This was a difficult surgery, and to think there might be more in the future is hard to swallow to say the least, but you will do fine. One thing I've learned about you in this short time of blogging is you're a strong one!Sending prayers!

  5. I'm so sorry that you are feeling heavy hearted! Life can be so trying sometimes, especially when you are caring for such a special little one! Puke would definitely bring me down! Praying that she and you start feeling better real soon! HUGS!!!

  6. I hope those future surgery's are not for Lillian. Try not to worry to much about that right now if they come to be you will a lot enough time to worry when need be. I hope she starts keeping her food down today. The hospital you went to sounds nice as far as hospital go. There is nothing better then home is there. I hope your feeling up again soon I'm sure you will as soon as little Lillian recovers.

  7. I am sorry about the palate thing. I do wish doctors and medical prfessional were more forth coming. It is probably that save their butts thing.

    Puke gets me down too and it justs happen when my kids are sick. I can't imagine it everytime they eat.

    But...the tv story was funny!