Tuesday, February 24, 2009

I've had many pity-party-tears over how Lilah's issues have, do, and will affect the brother/sister relationship.  More specifically, it breaks my heart that he can't love on her or play with her...........
as I had "envisioned".  
But, look how sweet this vision is:

In this last one you can see Garrett saying "look", as in "look, I just dropped her head":) The photo session that had required mucho bravery on my part (not to mention Lilah's) ended then. But, I think it was worth it.  Love these babies! Has anyone else noticed that when you are seeing your kids together, your feelings more than double (as in 2+2=>4)?
On a "same but different" (totally different) note...I am fired up! 6 more days until The Bachelor finale!!! I can hardly contain my excitement.  Sorry to disappoint, but I am addicted to "crack" tv!  Tonight: The Real Housewives of ______ (not to be confused with Desperate Housewives, which I also watch).  Don't make fun of me...it's therapeutic.

Sunday, February 22, 2009

I'm very behind.  That pretty much sums it up around here:) But, specifically, I'm behind on 'blogging' because PAUL HAS BEEN OUT OF TOWN FOR 3 WEEKS!!!!  I've had things to say and stories to tell, but I felt like I didn't want all of "cyberworld" knowing the head of the house was gone:).  That's right...New Jersey for 3 solid weeks!  I We are really happy to be on the other side of it and it was not easy.    I have to say I'm really proud of myself....I did it..."by myself", as Garrett would say.  Actually, I had loads of help from my mom, Paul's mom, Aunt Liz, and Marissa (who is a nursing student helping us a few days a week-a total answered prayer to have someone to give Lilah undivided attention and free me up a bit).

Lilah (aka: Yaya, Ya, Angel, Sister Sue, Mouse, & Sissy--I have always hated this one, but Garrett uses it endearingly) is doing great! Getting huge bigger, smiling, making her own little noises, and starting to imitate some mouth movements.  She loves to hold and suck on crackers or pretzels (Paul and I are so proud of this, you'd think she was running!). Her scale is tipping a bit more toward "fear" in regards to her big brother, telling me she is definitely "with it".  Her physical therapy should start soon and is desperately needed.

Garrett is testing my every last ounce of patience...and getting the better of me most days:)  They don't call it "terrible twos" for nothing! They also say "kids keep you young"--I have to say....I am not feeling it!

Paul is loving his new job with Cortis, a division of Johnson and Johnson and just got back from 3 weeks of training.  He is a sales rep for the endovascular division (I always screw up his job descriptions, so I'm sure this is not just right).  I have to brag on him, though:) Paul is the only person I know that has turned down more job opportunities than he's taken....he regularly gets calls from companies who are pursuing him, despite the fact that he isn't looking for a new job.  I am not surprised though--he's great at what he does and he's one of the most humble people I know (which is why he will probably 'have my hide' for writing this:), and incredibly loyal.  It was a tough decision because he really enjoyed his previous position and all the great people there.  We felt peace about the move and I'm incredibly thankful that he's enjoying it and, I know he'll do great!

I could probably write for days about our emotional status (fair, and improving) and adventures while house-bound (why does everything break while your husband is away?), but I'll save it for another day.  I take Lilah to her cardiologist tomorrow and have high hopes that we might be able to get rid of the O2 during the day, on a trial basis.  I'm trying not to 'count my chickens', but I am dreaming of the possibilities:).

Sunday, February 15, 2009


I always have something running through my mind like a ticker....a to-do list, a mantra of some sort, something Garrett said, a word that strikes me, etc.  This is probably  a serious sign of neurosis....don't tell me!  Today it's:   a love that will not let me go  ...."themey", I know.  Here are a few verses from the song I love. Hope you had a great Valentines Day!

O love that wilt not let me go, I rest my weary soul in Thee;
I give Thee back the life I owe, that in thine ocean depths its flow may richer, fuller be.
O joy that seekest me through pain, I cannot close my heart to Thee;
I climb the rainbow through the rain, and feel the promise is not vain that morn shall tearless be.
George Matheson, 1882

Monday, February 9, 2009

I haven't blogged in awhile because, a) I figure I should put "shower" first on the list and b) I have grasshopper brain (i.e. no concise thoughts, jumping from one line of thought to the next).  But, because this keeps you thinking of us and I am shameless in asking for your prayers...here is the latest:
Lilah is doing great. Really great. She's happy, making more of her noises, reaching for toys, laughing (silently), and gaining weight!  We've had several minor "issues" with her since returning from the hospital, most of which are resolved.  Her feeding tube has been infected, leaks a bit, and definitely requires some patience and practice.  The biggest concern for me right now is her sleep.....she's had to sleep on her back since her surgery and she wakes up anywhere from 5-10+ times a night for her paci.  I have worked like McGuiver the last few days, cutting into massive pieces of foam with a butcher knife, and have finally gotten a somewhat usable system to accommodate her tube so that she can sleep on her stomach without waking up 6 million times and night and driving me to the insane asylum....(sleep deprivation makes me unable to puncuate:).
The state of the union around here is crazy.  Paul has taken a new job (I maybe will just let him explain it sometime) and is very busy with training for the next several weeks.  Our insurance denied a nurse (boo!), but we've found a very competent nursing student to help on a somewhat regular basis.  Still running to at least 1 or 2 doctors a week and getting Lilah's therapy started soon.  And, all the other little things that go along with a house and kids, but seem totally overwhelming to me because all my spare hours are spent.  I think I say this every time, but I am feeling totally overwhelmed most days.  It seems like the immediate crises are leveling off, so I'm trying to adjust our family to this new normal.  Caring for Lilah and all that involves could really keep someone busy around the clock.  I am quickly figuring out for the sake of the "common good" and my own sanity, not everything can get done perfectly (or at all for that matter).  Trying to find the balance....and wishing there were more hours in the day and 2 of me:).

this is Garrett "going to the hospital". he takes his "monk", my purse, my coat and says "monk sick, we going hopital".  he walks around the house, and returns saying "monk all better". this is not my favorite pretend play scenario:(

Thursday, February 5, 2009