July 10, 2009

Today is July 10, 2009. Jeff did not expect to be alive now. His dramatic decline back in April and May has slowed. My continuing prayer for Jeff is healing. Either here or that God would take him home and heal him there. My biggest issue is how to honor Jeff in his daily care. His body is like a very old man. He gets frustrated because his legs won't do what he tells them to do. The paralysis in his face makes eating difficult and he says that everything tastes about the same. He can't see well and his short term memory is very bad. I would have no problem writing all of this about my mother-in-law who is 81 and has dementia, but my sweet 50 year old husband.... We are preparing for him to be bed bound. I took all of the froo-froo things out of the bedroom and put up all of Daniel's artwork. I did keep one very small cat figurine y the computer HA! Black twin sheets from Walmart make excellent curtains and lastly we got rid of the 13 inch TV and bought a 30 inch flat screen TV (which is small by todays standards). It has closed captioning and he can see the screen well. We moved his recliner in there too. We call it the man cave! So if he has to stay in there at least the space can be MANLY. The other big thing for us is that we have asked for donated leave time from the department of agriculture employees. So if anyone wants to donate a day of their leave to Jeff then he gets that credit. It is a real blessing because of insurance. His FMLA leave ends August 3 and after that we pay COBRA. On his second surgery he got over three weeks donated by employees. We didn't even know most of the people! We of course can't know names but the request goes to all employes! The HR person at the Department, Maria, has been amazing. Who wants to think about insurance at a time like this. God has taken care of all of our needs so amazingly I honestly am at total peace about this. (Thank you praying friends) Finally, some of you have asked about the text to speech machine for Jeff. I spoke with the Hospice nurse yesterday to see if the doctor there could write a script for one and term it a quality of life issue. (Thank you Barbara for the great suggestion) That way we could rent one. You can't just buy them through their website, you have to go through a rep. It is a Tobii Lightwriter. Check it out it is cool. We also broke out the bell for Jeff to use to "summon" me. We are going to get a baby monitor too. We can then use it for Scarlett. Who will be here soooooon! August 4. YEAH Please join me in praying for healing and if you have any other suggestions to improve Jeff''s time here with us...let me know. Please post short notes to Jeff using a large font. He honestly checks it at least 6 times a day. If you want to write longer notes please email me directly. Thank you all. and God bless you for your support and encouragement.