Sunday, March 1, 2015

15 months

Lily finally has a wheelchair. It's a loaner while we wait to figure out what kind of chair we are going to be able to get for her. The original chair we picked is a brand new model that no one around here has seen yet, and the early intervention people are hesitant to pay for something so pricey that she's never sat in. We're hoping that we'll be able to try it out before having to commit to it, or be able to try out something else that might work better. The main problem is that because Lily is so small, our options are limited. For now we've got this one that works alright but I'd be bummed if we had to have it for the next 5 years. At least Lily is better supported in it than she was in her other little high chair. If we can get a better chest harness and head rest, she'll be even more comfortable.

Slumpy in the high chair

If you see her out in it, it's okay to look (and ask questions, especially kid's questions!). We know she's in it. People tend to think of wheelchairs as limiting, but it's actually the opposite. If it weren't for wheelchairs, think of all the people who would be otherwise stuck at home. Instead of feeling sorry for people that use wheels, just treat them like everyone else.

Lily's new ride
Lily is still having tonic and spasm seizures (and may also be having absence and atonic seizures, but it's hard to tell), despite being on a new medication. Our next step is going to be a longer EEG, either 24, 48, or 72 hours, and meeting with an Epileptologist, who specializes in Epilepsy, because we can't seem to get the seizures under control.

Despite nursing seemingly constantly and doing a fairly good job at eating purees, Lily has managed to lose weight, though she is getting taller. Her head hasn't gotten any bigger. We had the opportunity to see her recent MRI when we were at a neurologist appointment. I mentioned that after her CT scan last year the neurosurgeon said he was surprised she could see (and was again impressed with her after the last CT scan and MRI when we saw him at the end of December). The neurologist said that he was surprised, too, because she basically doesn't have the back part (Occipital) of her brain anymore, where most of the vision parts are. The other parts have been affected, too, though he said the front is better off and her Cerebellum seems to have been untouched. Another visit to the ophthalmologist confirms that she can see and that her astigmatism seems to have improved.

Lily still hates physical therapy with a passion, and that makes it difficult to do on our own, too. She's rolled over five or six more times and it's actually pretty impressive how she can get around a little by turning from her back to her side to her back again. Since we haven't had many milestones to celebrate, we rejoice in the inch and millimeterstones that Lily has accomplished. Each time she smiles, every laugh we get (which are few), each time she's covered in food from bringing her hands to her mouth and face, we get excited about it all. Whether or not she meant to push the truck on her tray, everyone cheers. 

Working hard

Here is a video of her in action:

Two blog posts by other moms to help you out (and us, too).
How to talk about kids with special needs

To the mom or dad who told their child not to stare at mine


  1. she's beautiful. If I ever find myself in southern Florida I will run at her wheelchair smiling and squeeze her cheeks. Praying for all your hearts, especially yours, Laura.

  2. Thanks for the update. We still pray for her (and you guys) at bedtime.

  3. Thank you for sharing this update
    God bless,

  4. Sweet ride! Hope everything goes well picking her final chair. Prayers!