May 4, 2004

Today was a great day. I always try to see what Jenny can do or if she is able ot move on with therapies. I convinced the staff to let Jenny go without an oxygen tank for therapies since she is only on oxygen for moisture. Jenny had no problems and her saturation levels were normal for the several hours she was off the oxygen. So, they decided use room humidifiers instead of oxygen. Her secretions are less each day and she is so ready to get rid of the trache. Her eating was great today and her mouth opened so wide and she was able to move food from front to back well. I also realized that Jenny, being a singer, had not tried singing with her speaking valve. She tried it and sang a song for us to guess. Obviously, she is still making basic sounds, but her friend guessed correctly “I Am a Child of God”, just after a few sounds/words. She definately makes more sounds and has better use of ehr voice when she sings, and she requires less spitting on me to make it work (notice I said “less”, not “no”).

In physical therapy, Jenny was able to hold her head up on her own for 15 seconds at a time while in a seated position on the therapy table. She looked so great. Of course, she is such a perfectionist and feels she is not doing well. I asked if I was in her place and did what she did today if it would be a big deal and she indicated that it would be. So, either she expects too much of herself or too little from me.

Missy was helping out with me today and we decided to experiment with what would make Jenny most comfortable. There is a second bed in her room and Missy would position me and put pillows under me like we do for Jenny. All the while, Jenny is watching and having a huge laugh. From my brief experience, I had a short look into Jenny’s life. There are no comfortable positions and the pushing and rolling is uncomfortable. My nose itched and Jenny liked me knowing that little detail and indicated that this is one of her personal torments, on top of everything else. The first thing I did when I got up was to itch her nose.

11 comments

  1. I still get butterflies when I read of the progress. I could see in Jenny’s eyes that it is not enough. But I can’t help notwithstanding to cheer as Jenny moves her head, makes vowel sounds and spits on you. They are mountains for her to climb and she is doing it. (the spitting is for commical relief.) You are incredible Mark. You keep it real and she works harder for you than anyone else. Therapy was the best part. Jenny looked more relaxed while exhausting her feat to progress. I felt horrible when I asked Jenny to blink and let me know “yes or no” I couldn’t figure out why she was not responding until I caught on that she had an eyelash scratching her eye. She still had the ability to come from frustrated to laughing. Jenny you amaze me. I have a torn heart, but look forward to all your progress. Continue to persevere.
    Love, Margot

  2. I am Millie Smith’s daughter, Gena. Jenny does not know me, but I wanted to let her know how amazing and strong I think she is. I follow her progress, and silently cheer her on. Life has so many surprises for us, some good and some bad. I selfishly rely on Jenny and you, her husband, to inspire me to be strong when I feel the most weak. When life seems so hard to face, I look at Jenny and her strength to be a part of this life and you and your commitment to her, and I know there is no problem I can’t face and conquer.

    Jenny, I am guessing that there are times when you feel that everyone is doing everything for you and you are not able to give back. I want you to know that you do help others by inspiring them with your strength and humor.

  3. Jenny, I have been reading about your tremendous progress each day. I just want you to know that we pray for this progress each day and find great joy in your progress. You are a miracle to all of us and we look forward to hear you sing again at church.

  4. I have tears of joy when i read the last note. It took me back to when you were “teaching” all your dolls on rows of chairs in the basement and also to the primary program last fall. I’m cheering you on and ready to tell you a “Dad Joke” anytime you need one.

    Love,
    Pops

  5. Jenny and Mark,
    What wonderful news. Jenny truely is am inspiration. I am so excited to hear of your progress.
    I know that you do not know me, but I feel so close to your family in so many ways. I pray for your continuating grace and stability. May you all enjoy this time of progress. I am happy to hear that you are in what sounds like a great facility that in supportive of all of you.
    Mark, may you contiune to be strona nd I hope that you know that as much as we pray for Jenny, we pray for you and the kids!
    In love and Faith
    Janet

  6. Dear Mark & Jennifer.

    I was forwarded your site and I must say you are doing great!
    I have been through this journey and now have my life back and can be a mom again! Hang in there, it truly is one day at a time.
    blessings to you and your beautiful children
    kate
    http://www.katesjourney.com

  7. Jenny I am so glad to hear you are having a great day. Those days are going to become more often. I am so exited to be able to come back down and see you soon. I can’t wait to see all the progress you have made. You better have a song ready to sing to me. You guys are an inspiration. You have changed many lives through your trials and successes. Keep up the great work! We love you and miss you and will see you soon. From all the Henrie’s. Brian, Juli, Briitney, Brice, and Brinn.

  8. This was so wonderful to hear!! I can just imagine your facial expressions Jenny as you moved the food from front to back. You’re making such wonderful strides. It’s wonderful that you’re ‘singing’ too. I look forward to the day when you are back among us.

  9. Mark and Jenny!

    You ROCK! Great job. Keep up the great work. We are so proud of you. We will continue to pray for your family. I so MUCH enjoy reading Mark’s entries. It’s as if I am in the room with you listening to him talk. We love you both!

    Penny and Dee

  10. We are so happy that you are doing better. Remember when Dr. Hansen straightened your teeth? He always thought you had a beautiful smile. We think of you and your mom and dad often. We will be back in Barrington in July and will look forward to following all your improvement more frequently. We know that Heavenly Father is aware of you and what you are going through. We don’t always have to understand His ways, but have to trust His ways…and His timetable.
    Love, Glenn and Betty

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