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!