Independence or "Leave me alone"

Lillie and her Occupational Therapist in the play area.

We're not sure when it happened but, Lillie seems to want her independence. We used to be able to hold her for long periods of time. Now, she's decided playing on her own is just fine.

Don't get me wrong, we can still play on the floor and get the giggles we love to hear. She still loves to play with us, too. It does make her easier to watch.

Basically, we now have a non-toddling toddler. Lillie doesn't walk or crawl yet so, the attitude and opinions came but she still can't get to where she wants to go.

She knows what toy she wants and when she wants to be elsewhere. To get us to put her down, she leans forward to get out of our laps. She's gotten better at rolling around, which means she can change toys when she wants by reaching for a new one.

We've created our own play area for her (a blanket is the area, surrounded by toys, padded chairs, games and her exercise equipment). We spend lots of time with her there. We try to do the exercises the therapists do - obviously, we're not as good. She's even started playing with a drawing program on mommy's iPad.

Lillie continues to do better and better. There may be some setbacks along the way but, we feel ready for anything. We're so proud of our girl.

Waiting for Shoes

It has been too long since we've updated you all on how our darling girl has been doing. When I really think about what has been keeping us from posting, it seems to me that we have been waiting for more shoes – not just the ‘other’ shoe (we’ve learned there is an endless supply) to drop.

Over the last nineteen months, we’ve faced so much and stretched our lives into Gumby shapes so often, that a short period of what you might consider normal is actually kind of…freaky. Don’t get me wrong though – we are definitely willing and hoping to get used to it.

So, here is a rundown of the things that have been keeping us busy but not crazy lately…

·         Lillie is getting tall. Our former preemie princess is catching up on her growth charts nicely and seems to have gotten her long legs from her mom. She is still working on her physical development, so she doesn’t walk yet, but when we help her stand we are all amazed at how big she is getting.

·         Her vision is improving. We just had an appointment with the ophthalmologist a few days ago and he is very happy with the progress she is making with tracking and seeing overall. At this point, he believes she is near-sighted and will need glasses someday but her optic disc hypoplasia will not cause her to have profound vision loss. The way he explained it is that the information should get from her eyes to her brain, so it will depend on how she develops neurologically to determine how much she can recognize visually in the long term.

·         She’s eating and drinking more. After her last hospitalization, Lillie started taking a new medicine to help prevent vomiting episodes and it also causes increased appetite in many kids. We are pretty sure Lillie is one of them. While her main source of nutrition is still a toddler formula through her g-tube, she is now eating 3-4 ounces of purees every day. And she loves drinking water so much we have a hard time pacing it so she doesn’t take more than she can handle.

·         We love her new clinic. We were truly blessed to have a wonderful pediatrician on team Lillie for her first year and a half, but it has also been wonderful to be a part of the new pediatric clinic that is designed to care for kids with complex medical issues like Lillie. She has been sick a few times in the last couple of months, and they are always available to work through it with us over the phone so we don’t have to bring her into the office or even the hospital in the middle of a vomiting episode, for example. It makes a big difference.

·         Lillie likes to kiss! Best of all, one night recently Lillie decided to kiss her daddy back when he was busy lavishing her with attention. Now she is turning into a pro – when she’s in the mood, of course. It’s hard to overstate how important this simple act of reciprocating affection is when you don’t know if your baby girl will ever be able to say “I love you” back.

 

Including a picture here so you can all see how great she is doing and how big she is getting. Our special princess makes us very happy.