One happy girl...

The past week and a half have been fantastic with both of our little rays of sunshine!  The weather has finally gotten nice out and both girls are enjoying playing outside.  Our sweet Emily is chugging along, growing like a massive weed!  She is actually beginning to look fat-can you believe it!?  Her legs are huge, and well, her head is in like the 90th percentile.  It's a big one.  Her belly looks like a buddah took over.  While these features are common of DS kids, I can easily ignore those factors and relish in the fact that she's in 3 month clothes and those are quickly becoming tight!  Yes!  I also cannot stop smiling at the fact that this Friday, she gets to go back on breast milk.  I know she doesn't know what it means, but I am so, so, so excited for this.  I worked incredibly hard to get as much milk stored as I possible could before surgery and I am eager to begin using it!  I declare it a major labor of love to pump every three hours for 4 straight months.  Pumping, my friends, is very different than actually nursing.  More cleaning, more time, more everything.  Lilly was a champ nurser, so I can easily tell the difference in the frustration and time consumption.  I have 4 cases left of the Enfaport, the formula she's on, and hopefully we can send that back next week.  We will have to get a chest Xray next week to check her lungs and surrounding areas to make sure fat did not build back up.  If all goes well, bye bye formula.  She's finally gotten used to it and is not throwing it back up with every feed.  The doctor did warn us of that...he said most babies find it so disgusting they vomit everytime, resulting in a feeding tube (which was our situation for quiet some time).  Things just keep looking up for sweet Emily.

Emily's disposition is one of pure joy.  I swear the kid is just happy to be alive.  She's endured so much in her little life already that every smile someone gives to her, she returns one immediately.  She's happy and sweet spirited.  When she smiles, it's big, real big!  She loves to suck her thumb, which I suppose is better than Lilly's addition to the pacifier.  She is also beginning to hold her head up much better.  If I put her in the sitting up position, she will sit against me and actually keep her head up without bobbing it.  One step forward!  She is finally getting her PT evaluation this Friday and I am happy to finally begin these services again.  Her features of looking like a child with Down syndrome are becoming more predominant, and I have had two people ask me recently if she has Downs.  Like I've said before, I'd rather people ask me than stare! It has been people that have siblings with DS, so I assume they know what to look for.

Speaking of my big ball of energy, Lilly---we are beyond proud of her for using the big girl potty!  She is so proud each time she goes to the potty.  The one drawback of potty training is that she thinks that everytime she pees, she must shed every article of clothing she's wearing-and doesn't want to put it back on.  I've started to put her in only dresses so that it's only one item to put back on after she goes.  She is scared to go in public places and held it for at least 3 hours while we shopped at Lakewood 400 and traveled back home.  She gets that from me.  Apparently when I was little, I was scared to go in unsanitary places.  I still am.

We're headed to the beach for two weeks in June and I think we are all excited to escape the house for a little sliver of paradise.  Billy's parent's new house in Anna Maria is absolutely breath taking and makes you feel like you're in a bubble land.  I can't wait to get Emily's toes into the sand for the first time.  If she's like her big sister, she'll be eating the sand, running wild, and screaming for joy when she sees the ocean :)  So much to look forward to!

On the Mend!

Great news this week as many of you have already read about Emily!  I think I am more excited than she is to have the feeding tube taken out and to know that in only two weeks she can go back to breast milk.  I cannot imagine having to drink the nasty formula she's been on.  It smells so bad--10x worse when it comes up.  She seems to finally be used to it and no longer gags when she feeds.  When we left the hospital, the surgeon assured us that we would be on a feeding tube for quiet some time because many babies reject the formula due to taste and it just has to be pumped into them.  Thank goodness Emily was a trooper!  The cardiologist is still a little concerned about her weight gain.  She's still not at 10 pounds and will be 5 months old tomorrow.  She weighed in a 9 pounds 12 oz.  I MUST wake up in the night (now that the tube is gone and not giving a constant drip all night) to feed her- at least once.  Last night I woke up at midnight and she ate an entire bottle, but at 4am, she wanted nothing to do with eating.  We have to continue feeding in the night to make sure she consumes enough calories throughout the day for both body and brain growth.  I'm pretty tired today, so I think I'll be drinking more coffee throughout the day! 

We also signed all the paperwork to begin services through Babies Can't Wait.  It seems to move MUCH slower in Georgia than it did in SC.  We received physical therapy within a week of filling out the paperwork in South Carolina.  I have been to two evaluation meetings here and it will still be another few weeks for the physical therapist to come evaluate Emily to see if she qualifies.  I got somewhat snippy with the lady that said this because I could not fathom how a child born with DS would not qualify for therapy.  She's like a limp dishrag!  How would it do her any good in the long run to not receive services for strength and muscle tone?  When people said it's a constant battle when you have kids with disabilities, I now see what they mean.  Advocate is a major word in my vocabulary and I foresee it being that way forever.

It's still pretty difficult to see friends of Facebook that post pictures of their two month olds that are sturdy and holding their head up...Emily is no where near that.  She is still like a newborn.  No strength.  Her legs do have some tone though and she loves lifting them high in the air.  It's so funny to watch her at night play in her crib while trying to go to sleep.  Her arms though will fall to the ground when you lift them.  Her head still bobbles around.  It's difficult.  The lady that had me sign paperwork for BCW said she most likely won't walk until she's 2 (which I knew, but when you hear it out loud, it's different).  I also had someone ask me yesterday if Emily had Down syndrome. It's the first time I've ever been asked.  I would MUCH rather someone ask me if she has it than to stare.  If you know me well, you know I don't mind answering questions, so I was actually happy she asked me (it happened to be a lady in the cardiologist's office...which I am sure she put two and two together that Emily had surgery and looked a little different-as most kids with DS have heart surgeries and frequent the cardiologist). 

Lilly started gymnastics this week and LOVED it!  We will have to get her a little leotard.  All the other girls wore one and I know she will look as cute as a button in one :)  I'm taking both the girls next week to get some pictures done because we're about 4 months behind on them!  I can't wait to get some updated pictures of them around the house.

All is well here-we're taking it one day at a time!

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!