First of all, Livi had a great day today. She was awake for several hours at a time, which is pretty rare any more. She also tried to play with some toys and wanted to suck her pacifier when she went to sleep--all things that are reassuring and helps us to stay positive in the midst of the news from the rest of the week...
Monday we met with a new clinic--rehab. They mostly work with therapy for specialized equipment and things like that. We admitted that perhaps she had lost some skills that she had acquired around month three or four--or perhaps she was just too tired to do things any more, but either way it had been too long since she had rolled over, played with rattles, etc... This, as we knew it would, greatly worried the doctors and now plans will perhaps be changing for Livi.
Our neurologist was notified, but could not get an earlier appt for us than the one we already have (Dec 23). Also, an MRI is being scheduled for just before the end of the year (Dec 28) along with an appt with Genetics (Dec 22) and waiting for some other test results to come back. Now the concern is that Olivia's neurological supposed regression will cause recovery issues after the heart surgery and they do not want to risk that. The heart surgery is important, but not immediately urgent and can be performed a few months down the road.
That is the short version. Brian and I are praying and hoping for more good days than bad and that perhaps this regression in skills is just due to a tired girl. Perhaps God will answer our pleas and heal Olivia. We are always hopeful that God will have his way; we hope that includes the health of our baby. Thank you all for your thoughts and prayers. We could not ask for anything more helpful than that.
I did forget the camera on the way to the dr. appt yesterday, but I will make up for it tomorrow--promise.
Dear Kelly & Brian
ReplyDeleteEach day, each of us are reminded that life is more precious and in God's hands. You and Brian exemplify the words faith and trust. Thank you for your witness and know you are not alone. Praying for your Peace and Olivia's healing.... Thank you for your time in keeping this updated.
Dean & Nancy
Thanks for the update and for the spirit of faithfulness and trust I read in every paragraph. I'm lifting all of you up and looking forward to seeing you soon.
ReplyDeleteLove, Jane