Remembering a year ago

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It’s been a while since I provided an overview of Ian’s progress. I thought it would be helpful to provide you some updates so you can be praying for Ian specifically. When we look back we can see a lot of progress, but it comes in very small increments. We forget sometimes to look back, to do a “then and now” overview, and we forget how far he’s come. So, I thought it was time to review.

A year ago if we moved Ian into another chair at all besides his wheelchair it was a big production requiring lots of help and a hydraulic lift. Tonight I got Ian up from laying on his therapy table into his wheelchair by myself without the aid of a lift. It’s not easy but Ian puts most of his own weight on his feet as I pivot him into a chair. It’s not always smooth sailing either. We tried to move him from his wheelchair at church to a regular chair and we had to move him back within a short time and caused more of a stir than I would have liked. Pray for growing strength in his muscles (particularly his legs). Pray for healing from the pain we think he still feels frequently in his back and hip. Pray that he would walk again.

A year ago we were struggling to get Ian to sit up without slumping his head or his shoulders and without drooling. Today, we have him in padded lawn furniture, rocking chairs, sofas, etc., and he does really well. Larissa is often sitting next to him when there’s room for her (and even when there’s not room for her!). Now, when he drools it’s usually a sign that something is very wrong (e.g. he’s in pain somehow or he has some internal issues). Pray that he doesn’t re-develop the internal issues that have plagued him and required regular courses of anti-biotics.

A year ago he wasn’t even close to eating anything by mouth. Eating by mouth was always a messy abbreviated experiment. Tonight after Mary chopped his food with a chopper he had a full plate of spaghetti and meatballs. His chewing is awkward but getting better and he still isn’t drinking properly. We’re trying to get him more and more to drink and he’s making slow progress. We still need the feeding tube just to get enough liquids into him but for the most part we’re not using it to feed him that way at all. Pray that he could learn to drink so we could get rid of his feeding tube, something that has provided him some discomfort. Pray also that he would begin to feed himself.

A year ago we were struggling to get him to communicate anything to us in any way. Today we’re experimenting with a variety of forms of communication because he still can’t speak to us. We’ve tried blinks for yes or no. The speech therapist has been teaching him sign language but he doesn’t always use it or doesn’t use it clearly. It can be a little discouraging trying to understand what he’s saying. Tonight though Mary asked him if he wanted parmesean on his spaghetti and after repeated attempts to get an answer he finally plainly turned his hand toward her and “nodded” his fist (i.e. yes). Pray that he would more consistently communicate with us. Pray ultimately that he would talk to us.

A year ago we were struggling with a variety of health concerns from issues with his eyes to various internal problems. The number of medications he was on then is a little mind boggling. Gradually all those issues have been resolved. The threat that always seems imminent are infections that slow any progress. Pray for protection against infections and other health problems that could discourage his efforts to make progress.

A year and four months ago toward the end of Ian’s stay at the Children’s Institute in Pittsburgh he seemed incredibly discouraged closing his eyes most of the time apparently wanting to shut out the world. Wisely, the staff there insisted that it was time for him to go home. It wasn’t smooth sailing when we got him home but looking back I’m glad we brought him home. So much progress has happened at home and for the most part he doesn’t seem as discouraged as he was back then. It has seemed over that time that he has still gone through bouts of discouragement. Pray for his spiritual health. Pray he would continue to put his confidence and joy in the only one who can both deliver him and satisfy him regardless of his condition.
Thank you for praying all this time for Ian.
Steve

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  1. progress that we wouldn’t have been able to “see” w/out your help, steve. i am certain that the murphy’s + larissa can all use prayer when you are beset by discouragement also.


  2. Thank you for posting on Ian’s progress and for specific prayer requests. We will continue to pray for him and for all of you.

    Just a thought, and I don’t know if this is relevant, but would it be possible to use a thickener in Ian’s drinks so he can swallow them? My daughter has swallowing issues, and she needed her drinks thickened to “nectar” consistency (honey consistency is also available.) If it is safe for Ian, there is a product called Simply Thick that we used for our daughter. It is a tasteless gel that dissolves in just about anything. If you are interested, their website is simplythick.com. They have a trial package for about $10.


  3. Praying all the time, and reading as often as you post. Thanks for specifics to pray for! What shall we pray for you , Mary, and Larissa?
    Lotinskys


  4. Thank you Steve for taking the time to review Ian’s progress. At the wedding I remember looking at Ian sitting in a regular chair, eating regular food and I thought WOW! I remember at Children’s the speech therapist working so hard to get him to swallow. I remember you and Mary showing us his progress with his trunk control on his table. God has been good! It will be exciting to look back next year. We are praying that he will be walking and talking and praising God!
    Blessings – Brenda


  5. Thank you for the update, Steve. I, too, am reminded of God’s goodness and his past answers to my prayers, when I am in the midst of a trial or struggle.

    Will continue to pray for those areas you asked — as well as for your family and Larissa, and other caregivers.


  6. we love you, ian!

    keep working hard and leaning on God!

    -matthieu and amber


  7. thank you for that update! keep us all posted of specific ways we can pray. we serve a good God who desires to do good for His children. I wish we could always see WHY it is good. what amazing progress Ian has made even though it has been slow.

    praying!
    Chris and Audra

  8. Jack and Gina Plain


    Thanks for the specifics so we are reminded to pray more specifically and more often.


  9. Keeping Ian as well as the family in prayer. Thank you for the updates with all the details. “Great is our Lord and worthy of praise; His understanding has no limits.” Thank Him that He is our strength!


  10. Thank you for the update and praise God for all of the progress Ian has made. I’m keeping Ian and all of you in my prayers daily, but it’s great to know the specific areas to pray for.


  11. thank you for letting this stranger bear some of your burdens in prayer & hope. i wish i could better convey the ways in wh/ this blog has made the mysterious ways of our father pale in comparison to his love for us.


  12. As I am preparing to teach a women's study on Sunday morning I took a break & decided to check in on ya'll. So glad to hear the progress report. I rarely comment but often think of all of you in your situation and ask God to continue to make a way.

    Here's where my study took me earlier today and again this evening. When John the Baptist's disciples went to ask Jesus

    Matt. 11:4 Jesus answered and said to them, Go and tell John the things which you hear and see: 5 The blind see and the lame walk; the lepers are cleansed and the deaf hear; the dead are raised up and the poor have the gospel preached to them. 6 And blessed is he who is not offended because of Me.

    As we consider all that Jesus could have said buthe chose those words, in my study I have been led to a recent search on the subject of "being offended." In the words of Beth Moore, in her study "Believing God," she says,
    "Blessed are we when we could be offended and choose with every tattered shred of faith not to be."

    I just read a book called "The Prisoner in the Third Cell" (biblical and historical fiction)and it gives a look at John's situation which brings him to that Truth…

    I just wanted to share that because it must be hard on some days not to fall into discouragement yet you continue to rise up with the power appointed you. On those days, I know you will be especially blessed when you stay the course and are anticipating a mighty work from God.


  13. Psalm 103: 1-5

    Bless the LORD, O my soul,
    and all that is within me,
    bless his holy name!
    Bless the LORD, O my soul,
    and forget not all his benefits,
    who forgives all your iniquity,
    who heals all your diseases,
    who redeems your life from the pit,
    who crowns you with steadfast love and mercy,
    who satisfies you with good
    so that your youth is renewed like the eagles.

    Thank you for your post, Steve. You ARE remembering all His benefits! God is at work!
    I loved the story about the spaghetti and meatballs! When I was sick from chemo and had no appetite, there were two things I still could eat…and one of them was my mom’s spaghetti and meatballs!
    🙂
    I’m a pretty good cook, but somehow my meatballs just don’t taste as good as hers do…to me, anyway! If Ian had a “full plate”, I’m sure he enjoyed his mom’s cooking, too!
    Thank you again, for taking the time to recall Ian’s progress and to let us know of specific ways that we can pray.

    Still Praying!

    Mary Ann K.

    P.S…the other food was LOBSTER!
    🙂


  14. Steve –

    Thanks for this excellent post. Much has happened in a year!

    Joining you in praying for Ian,
    -tim
    Wellspring Church, San Leandro, CA


  15. Thanks for the update. May God bless Ian and all of you who care for his needs.
    -n-


  16. Thank you so much for the update. It really helps me in my prayers.
    Cynthia Haughery


  17. Thank you for the update. I now know exactly how to describe Ian’s progress to all those around here who are praying for him.


  18. Still keeping you all in my thoughts and prayers.
    Blessings and love,
    Tammy Carter 🙂
    Ontario, Canada


  19. This post is so encouraging and I can see progress in the most recent posts that are aspects of answered prayer in this one. Know that you have brothers and sisters from all over praying.
    Joy ~ RI

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