Thursday, September 21, 2006

Linnea Grace Lee - 08/15/03 - Sept. 21, 2004


Two years ago today our family went from four to three when Linnea passed away from the effects of Spinal Muscular Atrophy (SMA). She was and is precious to us and we miss her very much. Hardly a day goes by that we do not think about her, and her life, and her death. Sometimes I want to forget about it, then I cry out of fear that I will. We look forward to seeing her once again when the Lord permits and we will push on until that time comes. For now, God has called us to the difficult task of once again caring for another of His precious little ones, Emily Hope Lee. Please remember to keep our family in your prayers. Blessings and Thank You! :)

Wednesday, September 13, 2006

Sept News

Good Day to all! I just wanted to give you a quick update on our situation, Emily.

Cindy has been living with us for about 2.5 months now and she has been an INCREDIBLE help. I just don't know how we could have survived as we have without her help and love for Emily and Annabelle. THANK YOU CINDY!!! :)






Cindy & Emily








Emily has been fighting a chest infection lately and we have had to up her medicine and treatment regiment. She is hanging in there despite some lethargy and overall feeling of irritation. She is still our little Emily, but.. don't touch her when she doesn't want to be touched!! We have been using the BiPaP on her when she is sleeping as much as possible to help her respiratory system regain its health, but she is the determining factor in whether or not we can use it. She hates it (rightfully), so she has to be pretty tired in order to tolerate it. It really does help her though, we believe. She needs good deep breaths to get the germs out of her system, just like we do regularly. She also needs some help getting deep breaths b/c she is weak. The BiPaP helps her do these things.

Other than that we are ordering a kid kart for Emily as I indicated in the last post. This will help us get her around easier, since she is simply too big for her car bed and stroller now. We manage to use them still, but sometimes it seems pretty ridiculous since she is so big now. With this kart we will have a ramp to get her in and out of the van, so we are wondering if that is still the best thing for us to have... not sure yet.

OK - well that is all for now. We hope all is well in the lives of you readers. Thank you for reading our updates. We hope that by sharing the goings on of our crisis, you can be encouraged in your own. We are plain ole' people with the same problems everyone else faces, we just have this addition as everyone has their own. We still fight, have fun, eat, sleep (sometimes), and work out every day problems. Please pray that we will do these things fairly b/c sometimes we just feel too tired. I am sure you can relate. ;)

I leave you with this thought --

We parents are not here to prevent our kids from experiencing all the bad in life, but to walk them through it when it shows its ugly face.