Blog Category: Uncategorized

Standing

By admin,

Ian has been standing for brief periods (less than a minute) lately. He obviously requires lots of help. He now has a specially fitted shoe to help, too. One more step…
Thank you for your prayers.
Steve

  Filed under: Uncategorized
  Comments: None

Doing it on his Own

By admin,

Today was Ian’s second day of trying a mobilized wheelchair in therapy. He did awesome. He certainly knew how to drive the chair and was able to follow all of his therapist’s commands. It was amazing to see him taking control of his environment and a really encouraging reminder of how incredibly smart he is. He doesn’t need to be told how to do things twice- once is enough.

He will have the mobile chair on trial for a month at therapy to practice, and then maybe we can bring it home. I’m requesting a side cart to be put on it….

thank you for praying

larissa

  Filed under: Uncategorized
  Comments: None

By admin,

“To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.”

  Filed under: Uncategorized
  Comments: None

The Lord’s joy is my strength

By admin,

I’ve been wrestling with the phrase, “the joy of the Lord is my strength.” I looked it up, and it comes from Nehemiah 8:9-11. The 10th verse makes it very clear: “do not be grieved, for the joy of the LORD is your strength.” Honestly, I’ve wondered how joy could be the prescription for grief and for the sense of weakness that comes with grieving.

I’ve realized recently that the joy that is our strength isn’t a joy that we necessarily experience all the time. Our strength comes from the unchanging truth that God is constantly rejoicing because of his perfect knowledge of all things, his perfect control over all circumstances, and his ultimate victory over all his enemies. The Israelites grieved after hearing God’s law, probably because they realized they hadn’t and couldn’t keep his law. But, the leaders told them not to grieve and pointed them to the One who was full of joy at his own victory over their sin. In the same way, the Lord is constantly rejoicing in his own perfect knowledge of our circumstances and in his own victorious control over them.

I don’t have His vantage point, but when I recognize that He is always rejoicing I understand that He must see and know something I don’t know. I can find strength in that. God knows and controls the outcome of Ian’s situation, and somehow it’s good, though I don’t understand how. When I look up to Him through my sadness wondering how things went so wrong for Ian and Larissa and I recognize that He is compassionately and confidently rejoicing despite Ian’s circumstances, I can draw strength from that.

The Lord’s joy is my strength.

Thank you for continuing to pray for Ian and for sharing in our struggle.

Steve

  Filed under: Uncategorized
  Comments: None

Good to See

By admin,

Ian has been in an awful lot of pain this weekend but he has also smiled more times this weekend than I’ve seen in a long, long time. He’s amazing. Here are some photos from our “big girl” party that we had for Lydia. Can you tell she wants to be a princess?

  Filed under: Uncategorized
  Comments: None

Continued Progress

By admin,

Ian continues to improve. It seems like every few days he’s doing some new facial expression or something. His eating is going really well and he’s continuing to feed himself finger foods. He can basically eat everything we eat now. Last night he had Reesee cups and iced coffee, just before hot wings and blue moon. and lisa, ian even ate the whoopie pies:)

ian also is consistently using his sign language, mainly for yes and no. it is so helpful for him to be able to make decisions. pray that he learns how to respond more and more quickly when we ask him questions.

we’re getting closer to the two-year mark that i’m dreading. i want to keep praying for complete healing

thank you, always

larissa

  Filed under: Uncategorized
  Comments: None

By admin,

Psalm 20

May the LORD answer you in the day of trouble!
May the name of the God of Jacob protect you!
May he send you help from the sanctuary
and give you support from Zion!
May he remember all your offerings
and regard with favor your burnt sacrifices!
Selah

May he grant you your heart’s desire
and fulfill all your plans!
May we shout for joy over your salvation,
and in the name of our God set up our banners!
May the LORD fulfill all your petitions!

Now I know that the LORD saves his anointed;
he will answer him from his holy heaven
with the saving might of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.
They collapse and fall,
but we rise and stand upright.

O LORD, save the king!
May he answer us when we call.

  Filed under: Uncategorized
  Comments: None

Big Day

By admin,

Ian had a great day at therapy yesterday, which was a really nice gift for Mary’s birthday. During speech, he took cheetos from his therapist’s hand and fed himself about 5 times. Then he took a cup from her and drank on his own. He also was using his sign with them, which is unusual. He tends to use his sign the most with me and usually won’t do it in speech.

Last night we were eating appetizers outside for Mary’s birthday and Ian would grab hummus wrapped in a piece of bread and feed himself. He also grabbed his cup from Mary too.

The best part of the day was when we were all sitting out on the patio after dinner. We were having a dance party for Lydia and we started listening to “Globetron.” For those that don’t know, Globetron was a “band” consisting of Ian, David and Mark Persson. David and Mark, correct me if I’m wrong, but I think all of the songs were probably recorded within a few hours and were completely impromptu. We were listening to Forbidden Love, a song that Ian did the vocals for. We were all laughing really hard and soon Ian broke out into the biggest smile that we’ve ever seen in the last two years. And that just made us all start laughing even harder. David, I tried to get a picture for you but missed the opportunity:)

I continue to be humbled by Ian’s steadfastness and diligence and faith in God. I want to keep praying that he starts talking soon. Advancing in his self-feeding is a huge step toward talking.

Thank you, always
Larissa

  Filed under: Uncategorized
  Comments: None

Remembering a year ago

By admin,

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

  Filed under: Uncategorized
  Comments: None