After a week, still no clear answers to the causes for Meg's seizures. We have learned a lot about what has not caused them, however, and each test that reads "normal" means one more aspect that is right with her. No seizures have been noted so far this morning after giving Meg three doses of dilantin last night. If we find that she will respond better to dilantin, then perhaps I will not have to learn to spell/pronounce that other drug.
Yesterday, Jen met with a geneticist, and she forgot to mention the best part of the story. His question for her: "Is there any way that you and Ryan might be... related?" Apparently, Meg has a deficiency in an amino acid that commonly shows up among Kentuckians when relatives reproduce. Thankfully, we hail from different parts of the country, so that is really not a possibility in our case.
Our primary physician, a comical, dry, blue-jeans doctor, reiterated the plan of action today: continue running tests on her fluids to search for genetic deficiencies, while searching for a formula of drugs that will stop her seizures. Dr. Levi-Strauss did mention that Meg's seizures do not fit into the typical infant seizures (typical infant seizures?) that he usually sees. However, he says that her neurological responses are improving, which he found encouraging.
As I have been writing, I have heard LifeFlight descend, and the nurses have begun readying two rooms on the floor for a two-pede-trauma. Sure, waiting stinks, but Meg's case is very hopeful in contrast to some of what parents endure every day here. Our baby will come home, maybe not tomorrow, but soon. Some babies will not, and their parents are truly deserving of our concern. Our trials this week seem dinky when considered next to parents who no longer can hold their Megs.
Thanks to all who continue faithfully to pray for Meg throughout each day. Thanks especially to the Holy Spirit for patience and comfort and for eternal perspective. +2 today.
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Ryan, what a hoot thinking that you two might be related!!!! Keep hanging on and we are praying for you all. Give Ella & Meg hug from us.
ReplyDeleteluv ya, martha
Maybe it was those three years that Jen DID live in KY!!!!!!!!!!!! Them there people maybe just kinda sorta rubbed off on that there little young 'un.
ReplyDeleteLove Granny Hill(billy)
Hi,
ReplyDeleteMy name is Eric Hershey and I am a coworker of Paul Noecker (who sent me your blog). He sent me your blog to pray for you and also because we are going through the exact same thing!
Our son, Aaden, was born on 6-13-09. He started having seizures on day 2 of life. He was put in the NICU at Lancaster General, in Lancaster, PA, where he was born. He was in that NICU for 2 weeks when they decided to transfer him to CHOP (childrens hospital of philadelphia). He was there for 2 weeks and was sent home on phenobarb, keppra, and topormax (sp?). We thought at that point his seizures were under control, we were wrong. On day 5 at home he had at least 20 so we decided to readmit him to CHOP. He was there for 3 weeks where they ramped up his levels of meds unsuccessfuly. They decided to put him on the ketogenic diet and has been on that for a little more than a week and his seizures have all but disappeared! Of course I am just lightly brushing on many of the details (our son also had many 'normal' tests, EEG, CAT, MRI, ect.) I would love to talk to you more in detail since we are going though the exact same thing. You can email me at e_hershey14@yahoo.com. or if you even want to call me, my # is 717 989 0762.
We also find our strength in the Maker of our children! It is such a comfort serving a God who is not surprised by any of this! Hang in there! God is Faithful!
Did ya for one second you would find anything comical in these circumstances?!!! Our God is good and we thank Him for His love and patience with us. Keep up the good fight and hang in there. I think the Kentuckian is on David's side of the family tree. Much love to you all and da Hills!!! Our prayers are with you. Jill
ReplyDelete