Wednesday, June 30, 2010

WE ARE HOME !!!!!! Day 3 Wednesday, June 30, 2010

With God's grace and strength, we made it through these 2 1/2 days of intense testing, meetings with Dr.'s, conversations with other patients with ALS and their families, and a positive outlook on a horrible disease. How can you beat that? Again, we are truly blessed to live close to the most amazing Medical Center in the world. Confirmed again today that Peter is definitely getting the BEST care possible.

Today we were told that this would be a short day, 1/2 day but it ended up being longer than yesterday. Peter and I came up with questions that I wrote eagerly on my pad of paper. So my homework had been completed for Dr. Appel. We met with Sharon again this morning to confirm that Peter would be joining their clinical trial. She was so excited. Then after Sharon's brief visit, the Occupational Therapist, Joanne Ripple and her assistant Ashley came in with energy and happiness. Asking us about our living layout and potential obstacles that could pose a hazard to Peter in his daily routines. We are so lucky we have the home we have. Perfect for Peter with the master bedroom downstairs and tile almost throughout the house. No need for Peter to venture upstairs so it is perfect for our future situation. And we love our house.....we are so lucky. Peter was given a prescription for a handicapped parking sticker which will come in handy for work. He has ordered a rolling briefcase that will help him in mobility and ease with his walking. Our main objective in this disease is to eliminate any potential for Peter to fall. We are headed down that path to make sure we have done everything possible for him to accomplish this.

Then it came time for our final visit from Dr. Appel. He wore a cobalt blue bowtie with red hearts on it as he came into the room. If you can picture what it would be like if Jesus came walking into your room, that is the image you need to have as Dr. Appel comes in for his consultation. Surrounded by his "people" again, he was elated that we had completed our homework and had written down our questions. Some of our questions were answered by the Occupational Therapist but we had a strong 9 questions to ask him when he asks for questions. Dr. Appel put Peter on Rilutek and then wants him to take 1,000 mg of vitamin C, 1,000 IU of Vitamin E twice a day, beta-carotene: 25,000 IU once a day and then melatonin: 3 mg 20 minutes before bedtime. WOW!!!! He also got a pneumonia shot today and gave blood again. Poor guy, he has been tested to the max and poked and stuck alot during these last couple of days but has been a real trooper through the whole thing. So proud of him. Dr. Appel then asked for questions, I was ready and showed him that I meant business and took his homework challenge very seriously. He was impressed, I must say. After about 10 minutes of me asking and he answering he awarded me with a real gold star sticker that he stuck to my forehead. Of course, like I am with test taking, I was sweating and nervous and had to go to the bathroom but I stood as he awarded me the gold star and kinda bowed like I was being knighted.....ha! Not really but that sounds really good. He did actually stick it to my forehead and I wore it proudly throughout the rest of the day.

Dr. Appel wants Peter to still go to his General Practitioner up in The Woodlands unless that Dr. wants another opinion or doesn't quite know how to handle a medical condition because of Peters diagnosis of ALS. That is a good sign, we felt. He was releasing us to the Dr.'s that started this whole process so we felt we were in good hands with Dr. Appel's findings. We made our next visit with Dr. Appel for October 1st where we go back downtown to meet with all the Dr.'s we met in 2 1/2 days in 1 day.....WOW! That will be a busy day....I think we will stay downtown the night before we start that full day.

After Dr. Appel left we met with Clara and Karen from the MDA-ALS Foundation, so very helpful in giving us information in websites and go-to groups to find out information or equipment that we will need in the future. They mentioned support groups that we could attend but honestly at this moment, we have the best family and friends support group anyone could ask for. Maybe down the road but not at this time in our lives. Karen, Clinic Coordinator for MDA-ALS is our key person that Peter and I call if we need ANYTHING. She will find the answer and help us in anyway she can. She is so well connected it blows your mind. We love Karen.

Oh, my brain is running a mile a minute and almost fatigued but I forgot to tell you, our followers and it is VERY important but Dr. Appel did say today that because of Peter's amazing results on his breathing tests and his good physical condition and his continued strength in his body that he is NOT a candidate for an ALS patient that only lives 1 or 2 years......we both looked at each other, our shoulders went down and tears came to our eyes. We winked at each other and knew we were going to be just fine. Awesome NEWS......we couldn't ask for anything better in this situation.

Our next visit was with Dr. Holland, our Pulmonologist, who reminded us of Dr. Bailey on Grey's Anatomy.....she was incredible and so personable. She was so taken back with the fantastic results of Peter's breathing scores and only suggested sleeping positions to rest the diaphragm when he was sleeping. She talked to us about a possible career route for Stephanie in nursing when she saw her picture in the frame we had brought from home to decorate our hospital room. She gave us great information to pass on to Stephanie about Physicians Assistant (PA) vs Nurse Practitioner (NP). She was incredible.

Our last visit was from Wendy Schell, our Senior Physical Therapist. Knowledge just oozed out of her. Hand picked, I am certain by Dr. Appel, (which I am sure they all are but she knew her stuff and we just listened with amazement). She wrote a prescription for a new custom orthotic for Peter that he will wear in his left shoe that is made out of titanium. We will get that filled asap. much better than the one he has now. She explained to us in "our terms" that Peter's body is slow and more deliberate now. Walking that could be taken for granted three months ago needs careful thought and planning when maneuvering around in our daily lives. In easier words, it is time for us to slow down and smell the flowers, take it all in and not be in such a hurry. We can do this and are happy too. With the information we have received in the last 2 1/2 day, we are now up to the tasks and are ready to proceed.

Our day finally ended at 3:00 and then off to the hotel to get our belongings and to the car to come HOME. It means alot to be home. Stephanie and Winnie greated us at the door with hugs. We were so happy to be home. Now we put all of the information that we have been given to work in our home and in our daily lives. We are blessed and we know it.

This will probably be the end to the long and forever blogs for at least a while. Stephanie leaves to go to Maine to see her boyfriend, Ken and his family for a week. She received news today that she was accepted into the Allied Science College at Texas A&M today, so all is good with the world. Nursing is now on the front burner. We are so proud of her. All is really good with the world in our book.
Thank you again for your time and support you have shown us during these past several months and especially in these last 2 1/2 days. We had a wonderful dinner waiting for us this evening when we got home which was such a treat. Thank you! All of your calls,emails and texts were just what we needed to keep us going these last few days. You guys are the best. Better get to bed, Stephanie's flight is at 6:00am tomorrow morning, I will take her at 4:00am...Love is an amazing thing.....

Love you all, DeeAnn

10 comments:

  1. DeeAnn, Peter & Stephanie,
    So glad that you are all home together. It has to feel wonderful!!
    What a three days you have had! It's been great being able to get such detailed information about each day's activites and results. So glad that so many of your test results were so encouraging, Peter.
    Our thoughts and prayers are with you.
    Love, Joyce & Buzz

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  2. Peter, DeeAnn, and Stephanie,
    Thank you for taking us with you on this journey. We feel part of the team, and are secure in the knowledge that you are getting the very best medical care, and the strongest support possible from family and friends.
    Sleep well, all. and Stephanie, travel safely.

    Love, Mimi and Granddad

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  3. Wow! Your ALS team sounds great, but we are really glad you are home!
    Karen

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  4. Mission accomplished.. Now, with all your questions answered, you can get busy with all your tasks to make your lives easier. Somehow, now, we fell less anxious knowing that you have completed your 2 1/2 days and you are not operating in the dark. You all are special, special people and we love you dearly.

    Have a great time Stephie up in Maine..Yes to getting out of the heat!!

    Always,
    Georganne and David

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  5. Thanks for sharing your 2 1/2 days at Methodist with us. The care you are receiving is incredible....and the news you share makes me so happy!
    Glad you are in the driver's seat now and can live your lives together with great care just down the road!
    love all y'all!
    Donna

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  6. You inspire and and lead my example of how to live and appreciate life. You, Peter & Stephanie are my hero's. I am so blessed to have you in my life. I am honored to call you friend. I am SO very proud of all of you.
    Love,
    Joan

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  7. Good Morning,

    There is no place like home--glad DeeAnn and Peter are back home. Stephanie, we wish you safe travels on your trip and much cooler weather on your journey. A special congratulations to you on your acceptance into the Allied Science College--what an honor. We are all very proud of you. Gig em Aggs!

    So thankful to hear about the good results on Peter's tests.

    Keeping you all close to our hearts.
    Bill, Paula & Ashlin

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  8. Thank you so much for sharing all of this with us! I'm so glad that you've had such a positive experience with Dr Appel and all of the staff at Methodist. That's wonderful!! There are good doctors out there!! =)

    We love you lots and are so proud of your strength to get through this!

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  9. Just catching up on the Blog since I have been out of town visiting with my Mom. I am so proud of you three....the courage and positive attitude to face the future! You will go through your ups and downs...as I have with Doug being diagnosed with Alzheimers 8 years ago. Just KNOW beyone any shadow of a doubt that you are not alone...God is always by your side and friends and family are honored to help. Please ask! We love you lots and will continue to pray for your days to be good ones and your futures to be bright. Love, Nancy Volding

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  10. Hello Andersons..........how special to be included on your blog!! My hope is that you have no reason to call us before your October 2010 appointment...... BUT if you do....WE ARE HERE...and so honored to have met you! Stay Well and and Especially Make Great Memories!

    xoxo Rebecca (Axline)

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