Doing great!

Wow. The last few months have really been difficult. We saw Gus go through many of the stages he went through in the hospital and we were pretty shaken up about it, besides being exhausted physically, mentally, and emotionally. Through many tears and prayers, the progress seen over the holidays has increased. A couple of weeks after the Christmas holidays, we noticed Gus becoming more and more relaxed, to the point that he was at before Thanksgiving, when the chickenpox hit. At that point, we thought the medications might be too much because he was so relaxed, but they were never changed. During the last couple of months, we addressed the issue of increasing them and the doctor felt that we just needed to wait this out.

We are now at a place with Gus where he is relaxed and working hard on his muscle strength. We are so excited that God is so good to us! Gus loves the exercise: squats, tucking his chin and lifting up his torso, putting weight on his arms in a crawling position...and anything else we are advised to do. Last week and this week he did some new things at physical therapy: last week he 'walked' (the therapist made his legs move in a walking position) in a light gait and this week he kicked and did squats in the pool.

His response time is also becoming faster - he looks more quickly, tracks a little better, laughs faster and longer, opens his hands when told, says 'hi' when someone else says hi, is just beginning to grab a little at toys, and doesn't have as many problems with swallowing. More and more we feel the pleasure of God in giving him back to us. It's fun to see that he doesn't like bananas or orange juice but loves curried lentil stew. He loves movement, which is so typical of a 20 month old boy: he loves swinging upside down, being thrown up in the air, twirling around, and being tickled (all over his body). Any movement that can accompany "weeeeee" he loves.

Last week we had the 6 month review for the in-home therapists that work through the public school system. It was so encouraging to hear how he was just 6 months ago: didn't smile, didn't laugh, communication was difficult, wasn't sleeping well, muscle control was very difficult, had a hard time swallowing drool, was generally unhappy. What a difference. All of the people at the meeting were really encouraged about the progress. Along with the physical therapist, the occupational therapist, and the therapy coordinator, we were able to have Jo come from the 'Delta Gamma Center for Children with Vision Impairment'. She was the vision evaluator for Gus just before Thanksgiving. The evaluation had lasted over 2 hours and at the end, he could see better. She was really encouraging about the prospects of Gus having vision therapy. We followed her advice from the evaluation and have seen improvements in his vision already. His eyes move more together and he responds to visual stimulation, even without noise (like wiggling your fingers in front of his face makes him laugh). We were able to establish monthly visits with Jo and continue our current schedule of therapy (once a week from in-home therapists, along with twice a week at Ranken Jordan).

Besides the encouraging news about Gus, we are excited about the new baby. Gus loves children and babies so it will be really fun to see him interact with this one. He loves any picture of babies and when I tell him the baby is kicking him, he smiles. We now have a due date of March 4 (there was some debate...) and we are getting ready for him/her. The older kids are really thrilled.

Again, thank you. Your prayers are performing a miracle. gratefully, esther

happy holidays

We had the privilege of spending Christmas this year with some very good friends of ours, Paul and Adrienne Volk from St. Paul, Minnesota.

We had lots of fun playing cards, Boggle, and many other games as well as lots of baking and eating yummy food. Each of the kids helped out a lot.

We even had a play, directed by Adrienne, of the Christmas story (Gus played baby Jesus, Rose was Mary, Ian the narrator, and George an angel).

Gus has really enjoyed all of the Christmas excitement. He loves the tree (touching the prickly branches, watching the lights) and all of the other decorations. He has been really happy and content, especially if tickled or played with in any way.

Just before the holidays, we did a regular 'house cleaning' and asked Ian to keep Gus happy in my room. He was so quiet...we went to find out why and found this.

Our latest concerns and prayer requests are for Gus' strength to return, particularly for his back and legs. His back keeps curving to his right side when he is relaxed and although we keep straightening it, it could end up rotating and staying curved. If he could walk, this wouldn't be a big problem. To help him with walking, we are working on strengthening his legs with squats, standing in his stander, and different stretch positions to help him stay loose. Please pray that he moves his legs more, gets stronger, and is able to crawl and walk soon. If his back doesn't straighten out, it will affect his breathing and he would need surgery. (He loves standing and doing squats, laughing each time we do them.)

Thank you for your continued support. With a grateful heart, esther

daily work

Each day we have Gus stand in his stander, sit in his sitting frame, play with some toys, try some food (usually pudding at this point) and practice rolling over with belly time. His muscles, since the chicken pox (and a huge growth spurt) have been harder for him to control so he fights everything a lot more, even if he doesn't want to fight it. We might need to increase some of the medicine that calms those muscles down so that he can have more control. Here are the latest pictures of him.Please continue to pray for Gus. He has a hard time sleeping again and continues to lose control of his body temperature (sweats a lot, over heats, or gets really cold regardless of air temperature).

For those of you who are interested, I thought I'd post the latest our older children have learned in pottery (with their Aunt Deborah). They recently had a show-n-tell for Matt and I:

set backs

A couple of weeks ago, Fergus, George, and I visited the Delta Gamma Center for vision assessment. The assessor, Jo, is fantastic and Gus loved her immediately. Each time she talked to him, he looked at her and smiled. The evaluation lasted for over 2 hours and at the end, Gus was responding faster to the visual stimulation. I asked her what he could see and she said told me what he likes to look at. He apparently doesn't have any areas of vision that are completely gone. He can see colors, not just black and white and shadows. He prefers shiny, noisy, moving objects. Mylar is one of his favorites. Jo kindly gave him a few things to take home and he loves all of them but his favorite is a blue Mylar balloon. His ability to respond to the balloon and to control his arms to get the balloon (not with his hand yet) has improved over the past few weeks and has really encouraged us. His response to other toys has been much slower.

The weekend that followed, we visited friends in Memphis. We had a great time and Gus seemed a little sleepy, but not much out of sorts. On the way home, Sunday night, we noticed he was more upset than usual and I assumed he was teething and a bit tired from visiting. Monday morning I noticed he had chicken pox. I was hoping he wouldn't get them until he was a few years older. George and Rose also contracted them but theirs lasted for just a few days. Gus got a really bad case. For the last 2 1/2 weeks it seemed as if Gus had slid back developmentally at least a few months: he 'postured' (uncontrollable tightening of the muscles throughout the entire body) just as he had done in the hospital, even had a day of 'storming' (where he gets really upset and can't calm down regardless of what we do), and was unable to sleep for the first week (except for small naps of 15-20 minutes every few hours). It was very overwhelming to see him like this again. We were a bit shaken. I felt like I was grasping in the dark and finding nothing to hold on to. This past weekend, after the chicken pox was officially over, improvements started to happen. God heard my prayers. Each day since then, Gus has done better and better, although he is still regressed from where he was before the chicken pox. His 'tone' (when the muscles tighten too much) is still a little too much and he sweats a lot (not from heat but lack of control from his brain). When happy, he has returned to smiling a lot, with extreme ticklishness and responding well to any praise.

Today we saw the doctor overseeing Gus' therapies. He reassured me that this is very normal behaviour and that in the next week, we should see many more improvements.

We didn't want to take any pictures while Gus was in the worst of the chicken pox so here's the latest of him:

Thanks to the generosity of my sister Mary, we have the ability to update now at home and we can now access email. Thank you for your continued support even through my lack of consistent updating. Your prayers and support are holding us up.

better and better

Gus is continuing to do better. He makes lots of progress and then seems to plateau for awhile, which I'm told is common with brain injuries. This past week, we had an extra busy schedule. On top of the usual therapies, Gus had a 'swallow study' done and saw an eye doctor. Both visits were very encouraging. The swallow study, done with a radiologist, showed that his muscles for swallowing are all functional - just weak. We simply need to get them stronger. We've started to work on feeding him more often every day. It takes a lot of his energy and he doesn't do much else after that but sleep. Once he is stronger with swallowing, we'll work on liquids so that we can finally get rid of the G-button!!

The eye doctor as well had good news. He was checking to see if damage was done to the optical nerve during the swelling, but God protected it - there was no damage done to his eyes from the accident. The visual problems are all related to the brain injury. The next step for helping his vision is to take him to Delta Gamma, vision specialists. They can tell us if he sees double, just shadow, only up high, certain colors and not others, and so on. Our appointment with them is on the 13th of November. They will help us with strategies to improve his vision.

This past week, Gus is suddenly very limp (the drugs he is on relaxes the muscles and as he improves, they relax more and more). He isn't too crabby but he won't even roll over like he was. Please pray that the doctors realize the improvement made and will reduce his medications accordingly. They want to go slower with reducing medications but every time Gus has less medication, he does new things - it is always an improvement. If we need to wait to reduce them, please pray for patience on our part.

The kids all say hi to you. They love Gus and he adores them. They can always make him smile.

Thank you for your support. Without it, we would fall apart. Your prayers keep us going, keep our hope alive. Your comments mean a lot to us, even if I can't read them often, I treasure them when I do.

with hope and thanksgiving to God who hears our requests, esther