Monday, June 24, 2013

Summer time

Lillian has been brewing something for about a week and about three days ago came to bed with a bloody ear.  It concerns me how much she has bloody ears, but what's a mother to do.  She has tubes, in tact.  Dang sinus issues.  I know that's how it always starts.  EVEN though she is on and has been on antibiotics constantly since January I think.  Anyway....she is very excited about the baby and no longer makes the gagging face when we talk about him.  Him, did you notice?  In case you are new here, after five little ladies, we are adding a baby boy.  Everyone is thrilled and Lillian is getting a huge kick out of the baby clothes that are coming in here and there.  Today, my mom dropped off a few things including a teeny tiny pair of shoes.  Lillian keeps picking them up and saying "aw" (she has the cutest way of saying it) and she kissed every side of the shoes. Too cute.  She loves kissing my belly and telling the belly that she is the best not Dad.  LOL.  In her way of course.  I've come to realize that most of her conversation comes out in frustrated sounding noises, but she's not really frustrated, it's just how she's communicating, even if she is just "saying" see you later.  It sounds very harsh.

One of my daughter's friend came by today and brought Lillian a tank dress from her vacation trip...she just adored it.  That girl loves her some dresses.

Lillian also got an invitation to her first little person birthday party.  I think it's the first time she's gotten an invite to a kid birthday party, but I'm not 100% sure. I sat here the other night contemplating the party..wishing Lillian could go...but it's a bouncy house party and with lots of other 3-4 year olds running around and older children's probably not the safest thing.  It made me sad.  The flip side, the Mom invited us to come the next day after the party bc they would still have the bouncy house the next day.  Warms my heart that she would extend the invitation bc she knows Lillian is fragile.

I'm a little disheartened that she isn't taking to eating like I hoped she would.  If you'd asked me three years ago if I thought she'd still be using a feeding tube for her source of nutrition, I would have thought no.  Now, at this point, I'm wondering if she'll ever be without it.  Only time will tell.  I've learned or am still learning on this journey that I can't take anything for granted or make assumptions.  Three years ago, I never thought she'd still be wearing diapers.  But, here we are.  She seems to have NO concept of when she pees and #2, well she can't even do that on her own with out medication.

Overall, we are kicking back and taking it easy for the summer, late nights right along with late mornings.  Course, we still have therapy to attend twice a week and the occasional dr appointment thrown in.  She is just a few months away from turning, I can't even believe it.   By that time, she'll be a big sister. Even harder to comprehend.


  1. saw her in her cute little a little girly.

  2. I like the fact that you still have the faith for the impossible. Go Lillian Father God is behind you all the way!

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