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
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?
Psalm 20
