Sunday, April 26, 2015

17 months

We had picked out a wheelchair for Lily- all I had to do was pick a color- but I just couldn't shake the feeling that it wasn't the right decision. After talking with our PT, we decided to go with a different company. Not only will we be getting a wheelchair that I think will better suit her and our family, but she will be getting a stander and a bath chair. It currently takes two people to hold Lily sitting up and give her a bath in the baby bath (we found she prefers to sit than lay back), and it's pretty tricky, especially as she gets taller. The bath chair will keep her head steady and we can buckle her in, keeping her safe. Hopefully everything will be delivered within 8 weeks.

Trying out the sample stander. Not too impressed.

Lily is 17 months old now. Life is considerably different for her than for other 17 month olds. I will say- that can be very, very difficult. It can get annoying to not be able to just plop her down and have her sit; she always has to have a comfy place to be able to lay down. She's out grown (in length, at least) her infant car seat, but since we don't have a wheelchair for her yet, and she isn't able to stay upright in the stroller (and hates to be worn), we don't have much of a choice but to keep her in it. You know how you can take your child out of the car seat and sit them in the shopping cart? Lily can't do that, and until we're able to get yet another special seat for her that fits in carts and on other chairs, we've got no other choice. Even when we do get the wheelchair, it will be easier to have her in the cart than to have to push the wheelchair and pull a shopping cart.

One big thing that's good: Lily hasn't had a tonic seizure since March 16th. We had upped her dose of medicine twice to achieve this, which leads to a bit of bad news- one of the side effects of the medicine is loss of appetite. For someone who doesn't eat a lot to begin with, this loss of appetite is devastating. Down a pound, after having been slowly gaining, we're making the decision to have a g-tube placed. Food is such a stress right now and we just can't get enough calories in her. Sometimes she'll just sit there with food in her mouth, refusing to swallow. This is especially frustrating while trying to give her the medicine that she has to take with food- the same medicine that makes her not want to eat. One step forward, two steps back.

We're seeing the g-tube as a good thing- it will enable Lily to have healthy food (we'll be starting a blenderized diet) and hopefully since she'll be full, will be able to sleep better and work harder. It will be much easier to give her medicine through the tube and we'll be able to add supplements that we couldn't if she could only take them orally. One other big reason for the tube is her lack of coordination when it comes to drinking. We're working on getting her to take a bottle (or sippy cup or straw), but she's having a difficult time. She nurses fine, but one day, that's going to need to stop and she will still need to be hydrated. She's got her next appointment with the GI doctor in a few weeks and we'll hopefully be scheduling the surgery then.

Trying smoothie (via spoon) for the first time, she is saying, "Mmm!"

Lily is still having spasm seizures and will be having a 48 hour EEG in a few weeks to try and determine what we can do about those, and to see if she's having any other kinds. It will be good to get other opinions and treatment options.

In the mean time, we're just keepin' on, keepin' on. One morning while Lily was getting her medicine, our 7 year old (whom she adores) was talking with her and hugging her and said to me, "Mommy, Lily's perfect." I agreed.


  1. God bless you all. I appreciate the updates, thank you
    Antonia (England)

  2. I have never commented but I love reading her progress! Getting a G-tube was a hard decision for us with one of our kids but it was one of the best decisions that we made for him. I wish we had made is sooner! And there is always hope that she can come off of it; against the odds our now 2 year old is off of his tube that he has had since he was a baby and able to drink liquids!

  3. Happy 17 month day Lily! Praying for you and your family!