Saturday, August 29, 2009

1 year + 7 months

Good morning all. It's been a very busy summer. We've been on many outings with Shawna and she is still progressing slowly. She enjoys these trips and holiday outings immensely and is very stimulated by them. We went to a cottage mid July on Lake Kennebec which was posted as handicap accessible. When we phoned in January to set it up we inquired about wheelchair access. We were told no problem. Well it was a good thing all our children were there because it was a few steps up to the patio (not a ramp) and all the doors were tight, and the trips to the beach and boat dock were feats of strength to let the wheelchair slowly down the hills and pull back up later. Needless to say we should have checked the cottage out further by tripping down there before making arrangements. All in all, the holiday was thouroughly enjoyed by all, esp. Shawna when we were all together for a week. We have been may times to the pool at Grandpa and Grandma Bethlehem for therapy swims and sometimes just for fun. We get the water heated to 90deg F which enables Shawna to have more independant mobility. Sometimes she moves her right arm in a swimming motion as we move her left arm and that way moves herself around the pool. We also have the hot tub at home now accessible with a lift for Shawna once the pool becomes too cold to heat efficiently. We still have one more camping trip lined up for next week. We are supposed to recieve a beach wheel chair for trial but so far it has failed to show up. We really could use it as we will be going to Long Point in hopes of giving the chair a fair trial in the sand. The Mytobii computer useage seems to be on hold for the moment as the OT continues to pursue a better mounting system for the wheel chair which will accomodate Shawna's needs. Therapists continue to take Shawna on trips into the community to shop and sightsee. We took her to the Toronto Zoo as well. Too bad it was sooooo Hot. It was a good thing we had zoo-mobile tickets to travel which took away the great amounts of wheelchair pushing up and down the hills.
Physically Shawna's distonic or tone has been steadily decreasing with occasional flareups which may be weather pressure related. She has been able to independantly turn her head all the way over to her left shoulder. She can track her eyes now completely from left to right although it requires a lot of effort on her part and is not something she does without stimulus. The lack of tone in her left leg has made standing up more difficult as the tone was assisting to help her stand. She used to stand by activating her left leg first and the right would follow. Now it is reversed but this time it is her own ability to turn on the muscles to stand which sometimes is a bit slower but still forward progress as she is now in control. The physio therapist is still baffled by the way Shawnas body is reacting. Some days she has absolutely no tone which is supposedly an impossible thing for an ABI person, and some days she has it back. He tested her reflexes and her right side acted normal as if she didnt have a brain injury while her left side was only slightly slow. Shawna has been for a Botox injection consultation to determine if we can alleviate some of the tone in her left and back and neck muscles so she can further develop her own messages to those muscles without having to overcome the tone first. Before the injections take place we are waiting for a Spinal tap and immediate testing by the Physiotherapist and Speach and Language therapist to determine if the decrease in brain pressure has a positive effect on her physical and cognitive abilities. If this is determined to have a postitive effect we will go ahead with the insertion of a shunt to further Shawnas possible abilities and then redetermine the necessity for any Botox injections.
Speech still seems to be a major hurdle for Shawna. Although we get by with the long blink method for yes and two rapid blinks for no, it remains difficult to communicate in this method. She has been making more and more noises ususally when she is lying down and more often when she is not concentrating on making noise. It seems that when she tries intensely to do some things, they become impossible for her to do them.
Shawna is waiting for an appointment with an Opthamologist to determine if her vision has changed due to the accident. We have noticed she doesn't like to have her glasses on, and seems to see quite well without them. We're just not sure how clearly she sees. She is also waiting for an appointment with a bone specialist to determine if any corrective surgery needs to be done for her hips as they seem to be a bit misaligned from the accident and subsequent healing which was not done by surgery but externally since she was so badly injured that surgery would not have been possible.
As we celebrated our 25th anniversary with our children we were reminded that God is in control of all our lives. We could easily be missing one of our dear children if that was God's plan. We are very thankful to Him that we could enjoy that precious time together at the cottage. We pray that he will continue to heal our dear Shawna. Although we continue to plan for her long-term impairments we also pray that she may recover fully. We are thankful for her healing to this point, that she is able to stand and return our hugs, that she can smile and wholeheartedly laugh, that she is able to recognize us and that she is able to hear the faithfull preaching of God's word with her brothers and sisters in Attercliffe.
I'm sorry for missing a post at the end of July but we've been so busy this summer trying to balance all the "family things", that it was just one of the tasks that were shelved for more important ones. I thank you for reading along and keeping us in your hearts. We are constantly reminded by occasional aquaintances that they and their small children continue to pray for Shawna. Once again thankyou for your prayers and support. Al, Deb, Shawna and family