A new beginning...

Life is moving right along for us all.  It is truly amazing how different Emily already is with her "new" heart.  She has come alive.  She coos, wiggles 24/7, tracks objects consistently, has grown and actually seems like she enjoys life!  I didn't think we would see a difference in the way she would react to the surgery so quickly.  She no longer sleeps the day away and loves being in the middle of everything we're doing.  She is FASCINATED by Lilly.  Every single move Lilly makes is tracked by Emily.  She loves when Lilly plays with her feet, "feeds" her, and gives her kisses like I do.  Lilly I suppose feels like she's her mama.  She helps pick out outfits, bathe her, change her, and even knows how to check the placement of Emily's feeding tube before administering meds or milk.  I caught her playing doctor to Emily the other day while she didn't know I was looking.  It was hilarious and touching all at the same time.  Lilly cares for her sister more than I ever knew a 2 year old could.  She's so cautious and reminds everyone of her booboo and that we must be careful.  She never gets frustrated when Emily needs extra attention or if she can't sit on my lap because Emily needs me.  Lilly is such a kind, gentle soul.  I'm not exactly sure where she got that from because both Billy and I are impulsive and I, frankly, am very impatient.  This journey has taught me extreme patience, but sometimes it definitely hard to control!

Doctor Lilly Mehlinger

Sisterly Snuggles

We had great company last week with the visit of Lilly and Emily's aunts, Creeden and Gail.  They came to see our girls and Lilly of course was smitten to have them here.  They were bossed around the entire time they were here, but Lilly was in heaven.  We miss our friends in Charleston everyday.  It doesn't get any easier.  It never got easier when we lived in CHS and had all our Atlanta friends here.  We cherished all the trips home and quick visits and I suppose that's what we will do with our forever friends there!  I am prepping for a trip to Charleston at the end of the month because I still have my entire classroom to pack and move.  I'm not looking forward to that.  There has been a long-term sub filling my position for the year, but it's time to wrap up that chapter and put things into storage.  I'm taking another year off from teaching to get my feet back on the ground and figure out what life is like with a special needs child-or what normal life is like with two!  So far, it's extremely hectic and I'm not sure how people ever find time to work with more than one child.  I'm currently doing laundry load #5 of the day and it's only 11:28am.  There's no time for the paid kind of work! 

Aunt Creeden and Gail with the girls watching The Wiggles.

We have signed Lilly up for gymnastics classes at The Little Gym so that she can get some of her endless energy out.  She gets that from her Uncle Matt.  It must run in the blood line because she never tires.  Her constant talking comes from her Grammy and her sense of caring and patience must be a combination of her Mimi and Nana.  Emily is finally going to begin therapy this Wednesday.  The Early Interventionist will be over to write up her IFSP, or goals and developmental milestones that she should meet for her age.  We're not cleared to do heavy duty work with her until 6 weeks.  I fear that she definitely has lost more muscle tone in her neck because we have not done tummy time in weeks.  She is sitting in her Bumbo again so that will hopefully help a little.  She was denied SSI and Medicaid which is very frustrating because we are literally drowning in medical bills.  Her surgery was $128,000.  On top of that, there are various other medical expense bills that keep rolling in.  Just because we make money doesn't mean that we can pay all the expenses.  Her disability was not something I chose and I just don't understand the justification as to why we cannot receive assistance.  We will most likely reapply after my paychecks stop from the school district...which is not until August-so until then, I should probably just send CHOA my checking account number for autodraft.  Ha!

As for Emily's recovery, it's going perfectly.  Her scar looks like a little zipper.  I meant to take a picture and post it on here but she's sleeping and I don't want to wake her.  I'll have to post one next time.  It's not scary or gross looking at all.  It's healed almost all the way.  She's still feeding at night by tube, which, for the second time last night, she decided to pull out!  I am pretty sure she's making her point that it sucks to have it in.  I am going to beg the cardiologist to let us take it out next week.  I'll commit to waking up at night and giving her an extra feed.  It's making bug  red marks on her face and I can only imagine how uncomfortable it is.  If she has shown significant weight gain, he may be on board with my compromise :)

Off to shower for my brother's graduation!  He graduates from GA Tech today with a degree in Physics and a minor in Japanese.  Who does that!!??  He's off to Columbia in NYC in the fall.  I'm so proud of him!  Plus, to be selfish...this allows for a date night for Billy and I while we celebrate with the family :)  Whooo hoo!