Wednesday, April 29, 2009


Lillian has palate repair surgery coming up on May 19. We will also have to travel down to Louisville on the 15th for a preop visit with anesthesia. I am more than ready...but still somewhat anxious. Surgery is never one of those things you really look forward to if you know what I mean. Today, Lillian's nose is draining big time and while part of me is like---oh well it's probably allergies, another part of me is thinking here we go again. *sighs* Better start up the claritin again. And (i know you aren't supposed to start a sentence that way-but hey, this is my blog and I'll AND if I want small attempt at a joke... don't even get me started about the swine flu epidemic. Seriously, I feel like she is really at risk. AND and I'm really irritated at the news reports and government (I mean you Mr. President) about the whole thing right now. I mean, I would just hate for Lillian to go through this year without yet another strain of the flu virus......NOT.

In other health reports, Lillian will be having her Urology appointment to follow up on her reflux in the kidneys. She will have a VCUG as well as an renal ultrasound coming up in June as well as seeing her cardiologist in June to follow up with her remaining heart hole. Oh yes, and my favorite one of all Developmental Peds in June. We revisit pulmonary in May and I was supposed to take her to the pediatrician this week for hospital discharge follow up, but it is not happening I think. All of these dates subject to change due to KY trip where I will make the final decision about moving her care there. Oh by the way- did I mention we are moving in June and Bethany has a birthday in June?? Let's see, I never rescheduled her genetics appt. What's the point, its for them, not us and although I really like the doctor, I never feel really good after leaving that office. I also have to reschedule her opthamology appt bc she missed that while in her last hospital stay. IF, her reflux is still present in her kidney, she will have to have surgical repair for that as well. Goodness, just writing it all out makes me nauseous.

Look up overwhelmed in the dictionary, pretty sure it has my picture and phone number.

Therapy wise, there are many decisions to be made soon. She will age out of First Steps when she is three so trying to transition everything right now. Our upcoming move is complicating those matter as well. We'll have to take on some new therapists, say goodbye to some current ones (whom she's had her whole life basically) and then decide if I want her in a developmental preschool program....GAHHHHHH.

Oh yes, and there's just a little matter of four other girls to transition to new schools and new house and figure out where they will go when the surgery happens and the list goes on and on.

Wonder why my house is messy?? Reread from the top.

*insert serenity prayer here*

I think that just about covers most things as far as Lillian is concerned.


  1. I'm SO sorry for being so completely unreliable these days.

    If and when you need me, I shall be there!
    I'm making sure Steve has the 19th off and I'm going to try really, really hard to be down there a little more.

    When you type all that out like makes ME nauseous.

    One thing can be overwhelming, but to deal with them all at once...*bows to you*!

  2. So much of what you wrote I can relate to... been there, done that. Weird how a good portion of our lives with our special kiddos are so parallel!

    Just keep repeating that serenity prayer sister!


  3. This is why I like my box. My little pink box. I put all this crap in the box. And I put the lid on it. I do not remove the lid until absolutely necessary. I do not think of all of these things at once. We have a similar summer approaching, except it will be July that will SUCK, what with cranial reconstruction #3, developmental, eyes, and someone else. See...can't even remember. Uro is next week and sinus surgery is next week.
    Get you a box. A purple one maybe. In your head. And put this crap in it and put the lid on. Get out the duct tape if you need it. One thing, one day at a time. Seriously. Otherwise you will go crazy.

  4. You CAN do ALL of this!!! It sucks, but you can do it! Of course, you don't really have a choice, do you?

    I'm so sorry that you are overwhelmed right now! I HATE this feeling! I wish that I were closer so that I could come over and give you a hug and let you vent or go out while I helped you in some way! I'm stressed just thinking about your months to come, especially moving...UGH!

    I pray that everything goes smoothly! I'll be praying that God will give you peace, strength and hope to get through all of this! Oh, and sleep and a clear mind too! :)

    Let me know if there is ANYTHING that I can do from afar! Hang in there! Hugs!