I realize I have been terrible to update these past few weeks. I'll blame it on a baby who has thrown all kinds of things at us, a full time job, a bout with appendicitis, two older kids (who are still really quite young and needy), and just daily life.
My last update was 2 weeks ago, when we started her on Ketocal. That very day, maybe by coincidence since she woke up this way, she was a different kid. Super smiley, cooing lots, not sleepy, etc. She was so cute and fun! However, it was almost too much...she couldn't nap at all during the day, and by the time the evening came she just cried and cried because she couldn't sleep at night either. This went on for 3 full days, until finally, that third night, in the wee hours of the morning, I gave her her seizure rescue med diastat, in hopes of helping sedate her and break the brain wave pattern that was causing her to not be able to rest. After about an hour, it worked, and since then she's been somewhere in the middle: not as many Infantile Spasms (Praise God!), smiley during the day, but still able to sleep when she needs to (for naps and at night).
We have noticed an improvement in her IS too, which is great. So the plan was to have her slowly starting on the Ketogenic diet here at home for two weeks, and go to DC to get her up to full strength the week of December 3.
Well, last Thursday she started coughing and coughing. Then came the secretions and fever. Then the seizures. And she's been a very sick little girl since then. So, plans have once again changed, and we are not going to DC now. We feel she is too sick to make the trip. So far, we've managed to keep her home and out of the hospital, but I feel like she is still on the brink of having to be admitted here locally if she doesn't improve.
So, that's where we're at. It's quite frustrating and stressful to have plans keep changing continually. And also hard to keep everyone informed and to keep from getting confused! I'm not sure what the plan is at this point, but hopefully I will update when we figure it all out. In the meantime, you can pray that she will be restored to health, that she can avoid having to go to the hospital, and that we can continue to see an improvement in her seizures (once she gets over this sickness).
That was good decision not to make a trip. She will be soon and diastat should also be helpful. May be you can also try onfi which also helpful but i am sure you are aware about it and tried it.
ReplyDeleteWe will pray God for her.
Cristen and Johnny,
ReplyDeleteOh guys, my heart is just breaking for you all. I so much want to get to Roanoke, and be able to just be there with the kids....hope to be able to come soon. My arms are aching with emptiness as I think of sweet Waverly. Thanks for posting. I love you all. You and Johnny are loving your babies so well. Johnny is an amazing and brave young man, who after only 5 years of being a parent, is taking on duties that many men wouldn't think of. Heck, some Dad's barely even change the diapers...tho they should :-) I am amazed at his tenderness with the kids, and his ability to care for Waverly, and his confidence. Cristen, my mother's heart is with you. You are a wonderful wonderful Momma. When we start to ask "why GOd, why??" which is normal, we won't usually get an answer, but both of us have seen his amazing faithfulness. He will continue to be faithful and bless you as he has in the past. One day you will hear the many many ways that Waverly touched the lives of so many people. The folks on the FB support group that you got to know....who saw by your quiet example and life and love, and your ability to see God's goodness,in the midst of your heartbreak for your baby girl. I wouldn't be suprised if there will be dozens of souls in heaven....all because of our sweet and lovely and adorable Waverly. Cristen, YOU have always been special...I was told that over and over again during your childhood. Sometimes I want to say, "why God, why my Cristen?" She has always been so good. She does everything to the best of her ability. She was a wonderful daughter. She's special....so very special. She didn't deserve this heartache. It doesn't make any sense to me God. How can this POSSIBLY be good?" Those were my emotions that first week in the NICU as you were recieving devastating news. But, you know, God the Father could have said, "My Son...He was always special. In fact He was perfect. Had compassion on everyone. Never even sinned once in His life. Even when Satan tempted Him with everything. Yes, He was so pure, and so good. He just didn't deserve to be tortured. (and I believe some of the fear and torture of knowing just how bad, and how dark it was going to be) was some of His greatest suffering. And then He was treated as a beast of burden, only worse. Then the brutal crucifiction. But worse than ANY of that, God being who He is, had to turn away, and Jesus said, "My God, my GOD!!! WHY have you ABANDONED me?? And the father's heart was broken for the Son, who endured the suffering we can't begin to comprehend while we are still in this life. Be encouraged Cristen. No matter what happens...The Lord your God is with you! And Johnny and all your precious babies. One day, No more suffering. And heaven, will be a place of perfect joy, perfect peace and security, and never poisoned by sin. We will all have a new nature. I am praying for you. Remember to breath....remember to put on the full armor of God. I can tell you from so much experience...that if your mind is not steadfast on the things of God, and in prayer and thanksgiving, it is impossible to deal with all these major stresses. Love again, Momma bear