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.

 

 

 

First Family Vacation

Taking your first family vacation with a special needs kiddo can be pretty intimidating. Especially when the only overnights you have attempted were either at a hospital or a pediatrician’s house (in our case, Aunt Suze’s).

So this weekend we finally decided to take the plunge with a short getaway to a resort about an hour from home. And we are so glad we did. We all had a great time and we even learned a few things along the way…

The top five things we learned on our summer vacation:

1.       Don’t make a list. It may sound a little counter-intuitive when you have the task of packing up clothes, diapers, formula, medicines, syringes, g-tube supplies, toys, books, pack-n-play, and swimming gear, but it actually works better to look through rooms, drawers and shelves and set everything aside as you go. Writing a list – for us – provides a false sense of security and leaves room for that one key item (food pump anyone?) to be left behind. Instead, a visual scan provides the opportunity for the ‘duh’ reminders of those few things you just cannot replace on the road (favorite toys, prescription meds, you name it).

2.       Eat outside. While it is not always possible, finding a nice restaurant with a patio area sure does lower the stress level for parents (read: mom) who do not want to bother people or worry about how far Lillie can toss her toys when she tires of them. It also leaves more room for parking the stroller, which usually works better than getting a high chair that she may or may not be able to safely balance in.  

3.       Play musical chairs. Or tables. Or beds. In other words, feel free to rearrange the hotel room to fit whatever your family’s special needs might be. For us, it meant spending some time the first night adjusting things here and there and a relocation of an exceptionally heavy small side table each night. But it worked and it gave us a sense of normalcy when we had to handle routines like feeding time.

4.       Don’t explain. Being out and about with Lillie this weekend, we felt  really proud. Mostly of her and how wonderful she behaved and how much fun she was having. But also of our family and everything we have done in the last year or so to get to this point. That being said, we are used to being  around other members of Team Lillie – and not strangers who do not know about her challenges or why she might not be ‘acting her age’. But at the bayside when her dad held her up so she could dip her feet  in the water, we did not feel the need to explain to the chatty parents nearby why she was not walking and talking like their little tike. At the restaurant, we did not go into why the stroller was a better fit for her than a high chair. When offered, we took the crayons and coloring paper with a simple ‘thank you’. It was nice. We were so proud we knew Lillie needs no explanation.

5.       Count on a meltdown. Finally, no family vacation is complete without one massive disturbance in the force that will result in a long, very loud, possibly spit-up induced breakdown. We were really lucky that Lillie’s came at the last minute – the morning we were packing up. But it was a bad one and as much as it sucked, we handled it just like we would have at home and, still high from all the fun we had been having, got over it pretty darn fast.

All in all, we had an amazing time and a couple of days we will never forget. Thanks to all the members of Team Lillie who got us here.