Dear all,
The new coma-inducing medication has not met with much success. The doctors are going to continue to try it through tonight but will wean her off of it entirely by tomorrow if she continues to have seizures as she has been all day. The next step will be to try one more anti-seizure medication, which they have not tried yet for two reasons: it could have adverse effects on her liver, and it's not a particularly powerful drug. But it's something else to try, and the doctors seem to be grasping at straws at this point.
Eliza had a second MRI today; the good news is that there does not appear to be any progression in the damage to her brain, although we won't likely have all the details until tomorrow. As we understand it (and this is mostly our speculation), this probably means that neither the seizures she's having nor the underlying problem seems to be causing more damage. But hopefully we'll have a more thorough explanation tomorrow when the doctors have more time to sit down with us to explain.
As of tonight, even the gentlest of touches or the slightest movement triggers a seizure, so the nurses are trying to reduce her stimulation as much as possible. Unfortunately, with as many blood draws and medication changes and other procedures that Eliza endures hourly, it's difficult to avoid simulating her. So this increased sensitivity (which has never been observed before today) mostly seems to mean that we're not supposed to touch her; as you can imagine, this is rather frustrating.
The muscle biopsy is scheduled for Monday. Another frustrating bit of information we learned today is that we won't have results from that test for two to three months. Other test results, including an apparently important one involving amino acids, continue to trickle in, all with negative results. Eliza appears to be a very healthy, strong little baby whose body functions completely normally...except for this one little thing. The doctors are baffled.
As we near the apparent end of the doctors' knowledge and suggestions, we rejoice at the inexhaustible store of Wisdom on which we rely. Someone asserted today that, no matter what the outcome of this trial, Eliza has and will have a living purpose. To hear the praise of Jesus resound through so many of your emails and cards clearly confirms that Eliza is even now bringing glory to Him who is worthy. What more could parents desire for a child?
"I know whom I have believed and am convinced that He is able."
Love,
The (Dixie) Jacksons
