1 year + 1 month

Good evening all. Shawna continues to increase slightly with gains to physical movements. The tone in her left side has been slowly decreasing. We have decided to wait for making a decision about a shunt insertion until the aspect of tone medication has been explored fully with the assistance of Dr. Gillette. Shawna has experienced a few changes of late with respect to her personal support worker. Her PSW Sharon Kingma had to take some time off to become a new mom to Avaia Faith. Shawna was able to hold the baby and stare intently at her for a few minutes today. It was a beautiful moment. Today another important development in her treatment was tried. She had pool therapy! We tried first in the cooler pool to do assited walking but that was not too successful we decided to move her to the warmer pool and have her float and try having her initiate leg and arm movements. That part was succesful as she floated on her back with her new pfd-a. Her physiotherapist breathed a huge sigh of relief as everything went according to plan and her life vest proved to be very effective in preventing her from turning over and protected her airway completely. In the heated pool (91F) the tone was almost completely gone and she relaxed almost to the point of falling asleep as she floated. Travelling home she was exhausted and promptly fell asleep. Tonight when we make swimming motions and talk about her pool therapy she breaks out in spontaneous laughter, because she enjoyed it sooooo much. Heated pools here we come!
Another fantastic development in her treatment which was alluded to by Mrs. Vanyken in the last blog coments was a loaner "all in one"computer which is set up for touch screen and eye-gazing. The eye gaze portion of the computer has two cameras which watch Shawnas eyes to move the "mouse" and when she holds it long enough in one position clicks the mose to activate the programs or icons. It is completely set up for her to type messages that way and email or talk to friends online once she becomes more precise with her eyes. She demonstrates quite readily that she can read and regularly clears the screens playing memory games. The computer has an associated speech sytem which will speak the sentence she types out or the command she has enacted right down to saying what she would like to wear that day or have a drink etc. Right now we only have the computer for a two week evaluation but i'm pretty sure the therapists will recommend this device to enact a major breakthrough in commuication. The therapists were so enthusiastic the first time they brought the unit here when Shawna demonstrated she knew exactly what it was for and promptly sounded the alarm page and turned it off again and again for 4 times. Each cycle required three processes with eye movements to different quadrants of the screen. Very exciting..hopefully...considering one of the therapists questioned if Shawna could even do it since she herself couldn't.
Shawna also enjoys the new sunroom/exercise room which has been added to our home. A beautiful well lit and warm room to enjoy even on the coldest of days. Again we are experiencing the riches of God's grace as he continues to show us he cares for us and all is in His control. Thank you for your prayers and support. Al, Deb, Shawna and family

1 year + 2 weeks

Good morning all. As we continue on the path chosen for us we've come to a small hurdle. The meeting with the neurosurgeon did not give us any concrete answers. When he examined the CT scan he explained to us that brain surgery is not an exact science there are still many unknowns. He could not tell from the pictures if the right ventical enlargement was a result of pressure or the natural enlargement as the water pressure tries to equalize toward the area where the damaged brain tissue has dissintigrated. For the actual shunt insertion there is a 10% risk from the operation from infection, bleeding, wrong area insertion etc. The reults are varied 30% chance of immediate results, 30% chance of limited result and the remainder no change. There also is a danger Shawna may lose more brain function from the shunt insertion as it passes through the brain into the ventrical and if there is bleeding and an infection. It is left completely up to us. Shawna is included in the term us as Dr. Wells made a point of explaining the whole operation and possible complications to her after she demonstrated to him she could respond to his commands to blink and give a thumbs up. We decided to wait as there is only a two week wait for the proceedure and we are going to be in the middle of another treatment to try to eliminate the thrush in her mouth. Shawna is going to an oral surgeon who will put her to sleep to completely examine and clean her mouth and teeth. After that she will have an additional diet of antioxidants and some special oils to internally combat this infection as well as a new toothbrush for each cleaning and everyone who contacts her must wash hands thouroughly before and after contact. Since that meeting almost two weeks ago Shawna had an increase in the tone immediately following the meeting. We could not get definite answers if she wanted the operation or if she had headaches or pressure. Thankfully that excess tone dissapeared quickly and mustve been brought on by stress. Since then there has been a large reduction in left side body tone. Shawna has been able to center her head and track her eyes to the right and move her left arm more. There has also been less side curvature as her left back and side muscles have relaxed. We've also been able to stand her again with minimal effort against the tone. We're slowly getting back to where we were a couple of months ago. The rest of her therapy continues to be successfull as Shawna is able to stay awake now for most of the day and participates in all the sessions. We have been blessed again with this progress as the shunt idea seems less of an immediate concern. This process though is an up and down thing and we may still have a large uphill battle looming against the tone issue. We are thankfull at those times that we can lay those needs before our Heavenly Father and he continues to provide what we have need of daily. Thankyou again for your continued prayers and support. Al, Deb, Shawna and family.