Latest Update - December 6

Today was a real tough day. When Louie got up today, he could barely even stand, let alone walk. Neither one of us had slept all night, so I got him back into bed and he slept for 2-1/2 hours which helped a lot. We were supposed to go see Dr. Englander at 11:00, but I knew he was too weak for me to even get him ready and into the car. I thought about calling 911 as I was so worried, but I called Dr. Englander's cell phone instead. I told him how badly Louie was doing and asked him a lot of questions. He said that the high-resolution MRI that was done yesterday came back showing signs on the brain indicating CJD. He also said that he would be working together with Dr. Wang throughout the course of this illness. He made some medication adjustments with me over the phone and we talked at length.

When Louie woke up, I told him about what Dr. Englander said. He just broke down sobbing. Even tho he has "known" all along that this was most probably CJD, he still had hopes of a miracle. Reality hit hard today and we both just totally "lost it". We now have to face what is ahead knowing how horrible this disease is. I will NEVER understand how there can be a disease that is as CRUEL as this one!! We are devastated and at a loss for how much time we have left together.

Yesterday a Hospice Manager was here to do a consultation which lead to the decision to begin hospice service. She was SO wonderful and encouraging as far as treatment for Louie here at home. The extent of their service is unbelievable and will be a great comfort to both of us. She will be returning tomorrow to do the "admission" here where we fill out all the paperwork and she will then immediately appoint a nurse to our case. As the disease has progressed so rapidly, I am unable to take care of Louie by myself, so this service is a "God-send".

Tomorrow morning Louie is having a "swallowing and speech" therapy evaluation. His cough seems worse each day as liquids and little particles of food are going into his lungs. They will teach him how to swallow differently and also which foods/beverages will be best to consume. I worry about the cough as it is such a hard cough and tires him out.

We have gone through "ups and downs" with our emotions all day. There are still the feelings of anger, disbelief, frustration, fear and deep sadness. I feel like I'm in a "fog" and things aren't real at times.

Having Louie's son, John, arrive tomorrow will be a huge blessing. They can have extra-special time together and enjoy each other's company. I know it will take Louie's mind off everything at least most of the time.

And then Tammy will be here a week from today for 6 days which will also be wonderful for Louie - he can't wait until she gets here!! Tammy has been SOO loving and supportive which means the world to both Louie and me.

The following week will be Christmas when Steph, Pete and Gabriella arrive. I hope and pray Louie will still be able to enjoy little Gabriella as he loves her to pieces. It will be good for me to have them here - that's for sure!!

I'm so thankful that Hospice will be here throughout this illness to keep Louie comfortable and take good care of him!!

Our church family continues to be such a strong and loving support to us - we continue to be overwhelmed by the kindness, thoughtfulness and love from so many.

I find myself unable to believe that this has all happened SO quickly. It was just 2months ago that we had our professional portrait taken and Louie was fine. When I look at the picture, I cry because we were "care-free" then and everything was normal.

I know that we have to give this all to God - there is no way we can fight this battle on our own. I ask Him to help me feel His arms around me and I can actually sense myself leaning back into God's arms. This is a huge comfort to me. I have three excellent books we are reading together that Steph sent us - they give us much comfort and peace.

I will be writing on this "blog" often to keep everyone up to date.

Thank you for all your thoughts and prayers - we can't tell you how much it means!!

With tears of sadness.....

Love,

Connie

Update - December 4

Just got a call from Dr. Englander's office saying we have to go to Eugene either tomorrow or very early Thursday (before his doctor appointment) for a stronger MRI and another x-ray. She will call me back today to let me know the exact day and time.

"It's In The Valleys I Grow"

-- Jane Eggleston
Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It's then I have to remember
That it's in the valleys I grow.

If I always stayed on the mountain top
And never experienced pain,
I would never appreciate God's love
And would be living in vain.

I have so much to learn
And my growth is very slow,
Sometimes I need the mountain tops,
But it's in the valleys I grow.

I do not always understand
Why things happen as they do,
But I am very sure of one thing.
My Lord will see me through.

My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.

Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow.

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow!

Update on Louis - November 30, 2007

Today was Louie's first appointment with his new Internal Medicine primary doctor (Dr. Wang). She was a wonderful doctor. I didn't sleep all night last night knowing how important this appointment was and so anxious to get some assistance as Louie has declined badly this week, especially in the last two days.

He was so wobbly on his feet this morning that I was afraid he would fall on the way into the doctor's office. Once we got there, I asked for a wheelchair. I asked the doctor about his terrible cough, and we talked about how he has gotten so much worse this week. She is putting in an order for speech and swallowing therapy. His cough is from being unable to swallow correctly sometimes (which a person doesn't even realize) and so some liquids and bits of food are being inhaled into his lungs. The therapist will help him with which food and beverages are best to have, and which ones to avoid, etc. She will also work with him on speaking as his words are slurred at times and he has trouble getting his words out at times.

I asked her if we could get a "disabled" card for the mirror of the car for us to park in the "handicapped" parking spots. Also, she gave us a prescription to get a wheelchair at a health store.

We talked a lot about getting hospice started here at home. Things are to the point where Louie and I both need the help of this beneficial program. She wanted to talk to his Neurologist this afternoon and then put in the order for the Hospice agency to contact us on Monday to get things started. Well, Dr. Englander was not in today, so his nurse was going to ask one of his partners to call Louie's primary doctor to coordinate getting this going. His nurse was going to call me back and let me know - well, it turns out that Dr. Englander's partner said to wait and have Dr. Englander himself talk to Louie's doctor here (Dr.Wang), but Dr. Englander won't even be back in the office until Tuesday. I AM SOOOOO MAD!!!! We needed to get this started right away!! Now it's going to take longer to get this program started.

I called my insurance company today and got a Case Worker who is going to be working with me very closely. She is an RN and was SO nice. She will be calling me on Monday and we had planned on her talking to the Hospice people who would have been starting. So when she calls on Monday, now I have to tell her about the "delay" that occurred today. She told me to call her ANYTIME as often as I want to about anything and everything. Thank God we will have some support on a daily basis just a phone call away!!!

Louie is having bad pain in the back of his neck - I give him a pain pill for that, plus we use heat on it which helps some. He now has symptoms of uncoordination in his left hand that are just beginning - his right hand is not working at all. He is so fatigued most of the day, and it is just such an effort for him to do anything. This fast decline of his condition has shocked me and is too hard for me to see. I just want to wave a magic wand and make him all well!!!!! We hold each other and sob together. This is the hardest thing I have ever gone through in my whole life!!

I am determined to get him out of the house at least a couple times a week even if we just go for a ride. We can go to the mall and I'll get out the wheelchair and we'll just walk around to be near other people.

Our church meals kind of quit arriving, so my friend, Sandi, made some calls and got that all started up again. It is a huge help.

I will try to send more information once we get the hospice all set up. That just can't get here fast enough!!

Oh, I wanted to tell you that Leonard Wheeler called Louie two nights ago. He is going to come visit us - he lives in WA.

With a very heavy heart.....