Lilah’s Journey – part 2

Lilah’s mom, Paige, will be sharing about her daughter and their journey to repair her Tessier Cleft. We will share Lilah’s story here every week or two, as the treatment progresses. In two to three months, when the tissue expander is ready, Lilah will have one final surgery to repair her eye, complete a bone graft for her cleft as well as some soft tissue work. The first post on this journey can be found here. And you can read Lilah’s adoption story here.

April 7

Today, Lilah had her first saline fill in her tissue expander. She finds it quite exciting that she has a special balloon in her face. I explained that we needed to go and have it filled a little bit, without telling how it would be done (a giant needle). She didn’t even notice the needle and asked me after if the doctor had blown in her balloon to make it grow.

day one

Day 21

You can see in this next photo, the little dimple by her ear, the preauricular sinus. It is difficult to capture the true size of the expander in a photo, but you could see the skin expand immediately when the doctor filled it.

Lilah only cried briefly and was fine very quickly. She seems to have a high tolerance for pain. And treats after are a good thing!

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This is an example of what a tissue expander looks like… the tube runs back behind her ear and is completely under her skin (less chance of infection) which means that every fill is getting a needle!

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They are hoping to do a fill once a week of 10 cc’s of saline each time. There is only 20 cc’s in there right now and they want to get up to 60 cc’s! Hopefully, it will all go well and she will tolerate it fine and we can be done with this part in 4 more weeks. As soon as the skin is expanded enough, they will do her surgery.

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Read more about Lilah and her family at Life’s Little Wonders.

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