June 5, 2004

It seems like the really big improvements come after the biggest struggles. Jenny looked and felt so good today, maybe since she slept almost 8 hours last night. Her spasms are gone and she was working hard in therapies today. Jenny has resisited eating in the past since she could not do it perfectly. Well, she figured out how to finally stick out her tongue (as she is asked to do in most exams) last night, so she practiced all night and the next day. Unfortunately, there is a bit of a different motion needed for eating, but she must have assumed she had control of the tongue and that was all she required. Jenny was demanding to eat, and she was specific. She had a finely cut soft taco, part of 2 puddings, and an entire cup of yogurt. Since she was daring, we tried spooning liquids. She was perfect at it until I poured it in her mouth with a cup- which was a bit too optimistic. She was amazing.

I also picked up a massage table to allow Jenny to lay on her belly since the table has a hole for the face (and thus her trache). She was thrilled to let her back feel the air again. I gave her a massage and then let her lay there until she was ready to return to her back. I think I just unknowlingly added 30 minutes to our already busy daily routine. Finally, Sophia has been hanging out with Jenny much more lately by just talking to her and being silly. Sophia is also her mom’s biggest advocate when we forget to put Jenny’s glasses back on. Anyhow, Sophia came up to me with a T-vent (a humidifier device that is 1 1/2 inches and fits on the end of the trache in a t-shape) and asked me to put it on her. I stuck it on Sophia with medical tape and showed Jenny. Of course Jenny got a huge laugh, but then Sophia probably did the sweetest thing someone could do for Jenny. Sophia said, “Look at what I’m wearing mom- I’m beautiful.”

6 comments

  1. Hi everyone, I just wanted to let you know how proud I am of all the examples that your family stands for. After reading todays journal I feel that we are so blessed to have such loving and devoted people among us. I keep thinking about Sophie and her wonderful behavior. No wonder we are taught to be as little children. Just look at the strength given to us through there everyday examples. They help us to heal by making us laugh at simple things. What a gift to have laughter in our lives. I love to see all the great progress that Jenny is making. It makes me feel so good that she is trying to put the doctors to shame. They should know not to tell someone that they have to wait. We always want to prove them wrong. I know that Jenny will prove them wrong. She is strong and has so much support how could she not prove them wrong. My love to you and your family. Rita

  2. We think this is one of the best entries EVER!!! To laugh and cry at the same time is a difficult emotion but a great feeling. I love that cute Sophia, she is one of the greatest therapist you’ll ever have for Jenny. Your children are deffinantly a little heaven on earth.

    Love ya,

    M&M Green’s

  3. Wow — Sophia advocating putting glasses on. That’s sure new. As I recall, it was only about a year and a half ago (at that family get together we had in Hawaii) that she’d take my glasses OFF every time I got near her. She’s a real cutie. Thanks for sharing such a touching story!

  4. Mark and Jenny–

    My husband, Ross, and I met Sophia yesterday. We are the new nursery leaders. What a bundle of love and joy she is. I was thinking about you guys a lot last night and was deciding whether or not to write this morning to tell you what a great little angel you have. The decision was made quite easily – Thanks Mark! Her laugh, smile, energy, enthusiasm, obvious love for others, and her gigantic heart are all reflections of a great family. It is quite obvious the love she has for her family–as we played dolls she was sure to make sure that I knew which ones were Zach, Jessie, and mommy. I read about your progress, Jenny, every day. I pray for you and your family every day. I feel very blessed to have the opportunity to spend time with Sophia on Sundays, she has such a special spirit. You all are an inspiration to me. Ross and I know that Heavenly Father will bless you in ways that are beyond imagination. Take care, keep working hard, and please know that we think about and pray for you and if there is anything you ever need we are more than willing — (btw–I am Sherry Butler’s daughter)

  5. Hello there…it sounds like everything is going very well. I am gald that your childern are transitioning so well. But Jenny, you are so beautiful. The blond hair and Yacktman eyes will do it every time. I hope you continue to do well ( I know that you will!)
    Janet

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