4 – Undiagnosed
Lydia has many specialists looking into her case but no conclusive diagnosis as of yet. The doctors appear confident it is some form of genetic disorder and agree that her case is severe enough to significantly impair brain function and possibly shorten her life expectancy. They aren’t able to tell us if she will be able to walk or even hold up her own head, or if she’ll make it to age ten. But as one doctor said, “we really don’t know anything yet.” So our next step is to wait for the results of some genetic sequencing tests to come back and go from there.
Our focus is on managing Lydia’s symptoms. We are trying to control her epilepsy with daily medication. If the medication doesn’t work in the next few weeks we will try something called a ketogenic diet to reduce her seizures. We also start a series of appointments next week for her physical mobility, including therapy to improve neck movements so she can hold up her head, improve her swallowing, and keep her muscles going.
We are holding up with a lot of help from y’all – your ears, hugs, visits, prayers and thoughts remind us that we are a part of this crazy life fabric, and that we belong. Thank you so sincerely. Knowing we may have a short time with Lydia, we want more than ever to share her sweet gifts with you so please come spend time with her if you can. Please don’t be afraid to treat her like any baby. Hold and sway her. Kiss her neck. Tickle her chest and legs. She likes those things.
Our friend Nina has bravely come to stay with us to help and so we are in her good care at the moment. Jack even requested that she read his bedtime stories the other night. Nina leaves in a week or so, and we will never be able to thank her enough. The grandparents will be out here soon to help as well.