It's been a while since I've updated the blog.  Life has been busy.  Thankfully because that's just life, not because of things with Ellie.

Ellie has been completely off any oxygen (other than the air we breathe) for 3 days now.  We got the "okay" at her last cardiology appointment to take her off the oxygen at night 7-10 days before her next cardiology appointment which will be next Monday.  It's nice to have the house quiet again, without the constant sound of the oxygen concentrator running.  I guess it did drown out a lot of noise though.  And no 50-foot tubing to trip over.  So far Ellie has done okay, although I still notice some grunting here and there.  I think in a few days we will be able to tell whether or not she is tolerating it okay.  This trial period also comes at a difficult time as she is just getting over a bout with roseola.  Last week she had the typical symptoms - 3 days of a high fever, followed by a rash on her head, front, and back.  Unfortunately, any sickness seems to bring Ellie back to square one when it comes to her feeding.  She went from taking most of her feeds, if not all of them, by mouth to nothing.  NIL.  It's so frustrating.  I oftentimes want so badly to have her g-tube removed and hope that everything would be normal.  But I have to remind myself what a blessing it is to have that thing.  Without it she would be withering away, and probably would have been in the hospital numerous times for dehydration (BTW, we've been hospital-free for over 5 months now).  But now, even though she is sick, we can feed her as much as she needs and she doesn't have to do anything and she doesn't seem to mind it.  Ellie is still on viagra three times a day and a daily dose of a prophylactic antiobiotic so it's also been nice to zip her medications straight in to her tummy without her even having a taste which I'm sure would lead to even more oral aversions.

Ellie continues to work with a speech therapist from Kids on the Move who had been dealing with her eating habits, or lack of them.  Because she is now 17 months and still not speaking, she will be coming more often so that she can work on her speech also.  She also has a developmental specialist who will be coming more frequently too.  When she comes we basically just play with her.  At her last evaluation she showed mild delays in thinking and learning, receptive language/communication, and fine motor skills.  She is moderately delayed in expressive language/communication and self help and has no significant delays in gross motor and social-emotional skills.  I am amazed at how many people who receive services from Kids on the Move.  They are wonderful people.

Ellie is so much more aware of everything around her and is definitely attached to me, and Mike if I'm not around.  A couple of weeks we had our first experience with her g-tube falling out because the water had leaked out of the balloon.  Luckily, one of our neighbors who is a NP was here to help us out because I was totally unprepared for something like that to happen.  Ellie cried like she usually does when she is being inspected by someone she doesn't know.  It's never a good sign to her, even though it can be something really simple.  It makes me grateful that we have stayed out of the hospital for so long and that the majority of her hospital stays were while she was such a young baby.  If she were to go through that now, she would never let me leave her side.

Ellie seems like a normal baby, just a little on the small side and she doesn't eat, at least not much.  She's such a great sleeper; maybe it is due to the fact that her tummy is always full with the feeding pump going.  Once she learned to walk right after Thanksgiving, she has not turned back.  She is always close behind me, like my little shadow.   She loves to pull open whatever drawers she can and pull everything out and thinks she is so brave that she won't go down the stairs backwards and has ended up tumbling a few times.  We're working on it.  But I think it might have to do with her stomach tube getting in the way and feeling uncomfortable when she tries to go down backwards.  She loves music and likes to sway back and forth and recently has just started to show some dance moves!  Ellie has already become a pro with the ipad and it's one of her favorite toys - that's one of the reasons why we got it - because some apps can help her out developmentally.  She is always so quick to smile and is so loving and cuddly.

I was at a friend's baby shower yesterday and met a lady who had a friend who's daughter has heterotaxy.  It was so weird.  I started describing some of the symptoms Ellie had and just after mentioning her heart defect and malrotation she asked me if she had heterotaxy.  I didn't think anyone other than the doctors knew what that was.  I was so stunned that she figured it out especially because it is such an uncommon syndrome that it only affects 4 in a million.  Anyway, I started reading her friend's journal online and it is so interesting to learn about what they have experienced.  So many similar experiences brought a flood of emotions back to me.  It was almost hard to read it.  I had the same feelings when I was trying to create Ellie's first year memory book and I had to stop because it was hard to relive everything.  Her first year was a tough one.  Our little girl has definitely endured a lot.  But we are so happy she is doing so well and hope and pray that she continues to do so.