Hey all,
Its now 8 weeks post operation and the 6 week window that we were originally given by the surgical staff has long since passed. They told us that her swelling should be decreased enough by 6 weeks post-op that we would no longer need to suction her and she should be back to "normal" from a surgical standpoint. That did not happen. Here we are now 2 weeks later and we still have nurses at the house, still having to suction her every hour and a half or so and still having some pretty severe digestive issues on top of it. We really dont want to entertain the thought of another surgical procedure to "figure out the problem", but that seems to be looming on the horizon. We will be scheduling some tests this coming week that will hopefully give us enough answers that we'll be able to avoid that. Allison simply does not recover well from surgery, Sadly, we are very well aware of that fact.
This whole situation has really taken it's toll on us as a family. Alot of our plans that we had for Keala's development have been simply dropped by the wayside. Neither one of us seems to have the energy and patience required to successfully deal with a little one that is so smart and full of boundless energy. We are having real difficulties being able to keep our frustration, fear and anger hidden away. There is a filter that great parents have that allows them to keep those emotions tucked away. Sadly, ours really isnt working very well. We are amazed by her all the time, but she is so desperate for our attention that she is already acting out and doing things that she knows are wrong, just to get our attention away from Allison for a minute. We have battled to retain our ability to tag team as parents, but sleep deprivation is a killer. Amy is not sleeping well, and is exhausted all the time. She was also starting to have some heart issues pop up because of the amount of coffee she was drinking (and the chocolate she was eating). The docs told her to cut down on those and that has made her even more tired. Jeff hasn't really slept well since Allison was born. Not an exagerration, simple fact. The fact that Allison does not sleep through the night has been a constant since she started havindg seizures at 9 months old(normally the age when little ones start to sleep through the night). So, long story short, sleep deprivation is wreaking havoc on our family. We appear so strong to people, we get those comments all the time, but it is really just survival. As Pastor Kerri told us a few weeks ago, theres a real need for us to be able to flourish as a family and not just survive. When you get to a point that the light at the end of the tunnel starts resembling the glow of an unattended campfire at 5am rather than the blaze of a bonfire, you know it's time to start digging a little bit deeper.
Our question is, How much do we have left? I fear we're dragging the bottom of the barrel.
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"But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death works in us, but life in you. But having the same spirit of faith, according to what is written, “I believed, therefore I spoke,” we also believe, therefore we also speak, knowing that He who raised the Lord Jesus will raise us also with Jesus and will present us with you. For all things are for your sakes, so that the grace which is spreading to more and more people may cause the giving of thanks to abound to the glory of God. Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal." (2 Corinthians 4:7-18, NASB95)
"Rejoice in the Lord always; again I will say, rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you. But I rejoiced in the Lord greatly, that now at last you have revived your concern for me; indeed, you were concerned before, but you lacked opportunity. Not that I speak from want, for I have learned to be content in whatever circumstances I am. I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need. I can do all things through Him who strengthens me." (Philippians 4:4-13, NASB95)
Actually JESUS "said" what was posted before ... but Ross is praying for you guys and would help in any way possible.
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