3/13/09 - Sitting - Waiting - Praying

Before I start, we are still gathering Kayleigh's bedtime stories from all our faithful followers. We currently have around 55 stories so far, but I was hoping to put together 365 to read to her for every single night of the year. That seems far fetched now, but we would still like to receive everyone's story to enter in to this book. Please refer to this post: Opening Up to learn more about this project we all have been working on for Kayleigh. Since she is projected to come home soon, we will need to finish things up very soon.

It seems like sitting and waiting is all we have been doing this whole past week. Sorry there haven't been any great updates, but as we anxiously await these final weeks before Kayleigh can come home, we are on stand still because of all the tests they are doing. So no progress has been made this past week and we are probably still a month out before Kayleigh will FINALLY get to come home after "almost" 9 full months in the NICU. (OUCH!!!)

This past week, Kayleigh has had several test performed to determine whether or not she needs to get the Nissen procedure done. We were supposed to hear something today, but that didn't happen so we hope to hear something this weekend.

The MRI to give us more details on Kayleigh's eyesight was postponed for several reasons. They feel like the MRI results won't change anything at this point and the reflux issue needs to be handled first. Since Kayleigh needs to be heavily sedated for the MRI and a different trach needs to be inserted (because of metal and magnetic issues in the MRI), they will perform the MRI while Kayleigh is sedated for the G-tube/"possible" Nissen surgery. So it should be next week that we are able to get all of this completed.

On another note, they did do a hearing test today and feel like Kayleigh has moderate hearing loss. However, it could be what they call "conductive", which means there is fluid build up from her lying in her bed for the past 9 months. If that is the case, it is easily fixable. If it is not conductive, then we have a bigger problem on our hand. I am not sure when the follow up exam is going to take place, but I it will more than likely happen after they perform the surgeries and MRI for her eyes next week.

So, just when we thought we were out of the woods with issues, they just don't seem to go away. We really thought that nothing else could possibly happen because Kayleigh has seen it all, but I guess we were wrong. Please pray that things aren't nearly as bad as they seem right now and that we will get out of this hospital soon without any other major issues. We are beyond exhausted with all the stress going on and we could use so many prayers from you all to lift us up.

This is going to be a tough week next week with all that is going on and we know that the Lord will carry us through this last leg of the race. However, we know all too well that your prayers have saved Kayleigh's life and brought her through some of her toughest battles. Just because her issues have not been a severe lately, that doesn't mean we need to not pray as much. I am at fault for not praying as much when things are going great and I am now learning a new lesson in life. We have to continue falling to our knees until Kayleigh is home for good just as if we need to fall to our knees when we have a perfect day in our every day lives. Our Lord should be glorified no matter what and no matter when.

I also ask that you pray for our dear friends, Brent and Michelle. Their Abby is in her last stretch with Chemo and she has a fever and a infection around her g-tube site into her tummy, but no white blood cells to help heal her sickness. Please pray that the Lord will work miracles and heal her frail body so she too can go home soon to her loving parents. Brent/Michelle, we are thinking about you all and we love you!

God Bless,