1 year + 3 months

Good evening all. A lot has happened since the last posting. Our prayers have certainly been answered as the tone or Distonic in Shawnas left side is continually lessening. The physiotherapist is excited to have Shawna almost back to the point she was before her brain turned all the muscles on her left side on full. We are once again working on sitting her nice and straight to work on strenghthening her core muscles. Accupunture is being used regularly to relieve tone in her arm with a lot of success. We have another new machine to use which is called an Acutouch which uses very strong magnets to change energy flow in the muscles. It works on the same principles as accupuncture with the pressure points but the skin is not pierced. Shawna seems very relived when we use this on her and tends to fall asleep almost immediately. Pool therapy also is a huge succes as we go onces a week every Sat night to Valley Park. When immersed in the 96 degree water the tone immediately dissappears and Shawna can move her limbs bit by bit Shawnas cognitive ability has become increasingly evident as she answers questions with eye-blinks. She is also increasing her food intake by mouth she's gotten as far as nine big teaspoons full swallowing successfully. She likes pureed pears and yams. Communication continues to be the primary goal and her eye blinks are very consistent but it takes a long time to determine what she is thinking. Shawna received her own P10 Tobii computer which uses eye gaze to manipulate screens and text editing as well as environmental control and blue toothed to her cell phone to text her friends. Much of this will take her years to learn but we have a very excited young lady on our hands chomping at the bit to learn. When the tone decreases significantly enough we can bring the computer with her everywhere for her to communicate as it speaks the words she types. Shawna has had several outings for social interaction aside from regular church attendance. One of the most intriguing was when her friends came and took her out for an evening of shopping and out for supper. This was totally unsupervised by us but we were very confident of her friends. After all one is a paramedic another is her OTA another is a nurse , one is her PSW and others trained to care. It is truly a blessing to have friends that care and are willing to sacrifice their time for Shawnas benefit. She was so energized when she came home that she was vocalizing for almost an hour and could hardly go to sleep. Our addition is finished and now we just have some landscaping to complete the walkways and gardens around our home. We have been so blessed by our Heavenly Father to experience the riches of His grace as he continues to provide for us. We belong to a community that continues to uphold us and strenghthen us with their word, works and prayers. We stand amazed and thankful to God for his blessings. Thankyou all. Al, Deb, Shawna, and Family

1 year and +/- 2 months

Good morning all. I hope you are all enjoying a beautiful Sunday. Just a little reflection first this time. Many times we are travelling around in Hamilton and surrounding areas and people come up to us and say " We're still praying earnestly for Shawna and your family". When we hear this we are deeply humbled and at the same time tremendously strengthened. We know that God hears prayers and by our daughter's progress we can see the answer to these prayers. We join many others at this time who pray for the Bos family in Smithville who yesterday buried their beloved Ricky Bos. She succombed to a form of brain injury in the form of an anuerism. We know in faith that God has called her home, and that her earthly work is done. On the west coast (B.C) my cousin Evelyn Cumming (Debruin) was devastated with the loss of her daughter, Leena (24), in a car crash on March 4. She leaves behind her young daughter Elissa. We continue to pray for our family out West. These accidents teach us how fragile our lives really are, and that we must always be prepared to meet our creator. Live every day to the fullest doing the best work to the tasks we are given, and giving thanks for the blessings we have recieved.
On to Shawnas progress we continue to watch the small steps she continues to take. The thrush in her mouth is steadily lessening with a special diet of probiotic powders and anti-oxidants and some good old fashioned tongue scraping. She has been to see the dentist and amazingly enough she opened her mouth for him to check one time and on another appointment opened her mouth for the hygenist to be able to clean half her teeth this time and hopefully the other half in another appointment. We could not do all her teeth in one appointment as she would have too hard a time to keep her mouth open that long.
We are still waiting for the family doctor and specialist to confer and come up with a recommendation or prescription to administer a different drug to combat tone(dystonic). Her tone is steadily decreasing on its own but very minimally and slowly. She is able to move her head now to center and slowly strenghtening that process. She can also track her eyes from left to right again, but when shes tired they stay to the left.
Pool therapy continues to be a huge success, as the tone is almost all gone when we lay her out in the heated pool. She is experiencing gains in her leg movements steadily, and starting to move her left leg more, while her right leg is increasing its range of purposeful movement. We are changing the location and construction around our hot tub at home to facilitate more of this type of activity especially sitting in the pool.
We lost the MyTobii computer for a while(it was a two week trial) but the process is in the works to get a newer one with more bells and whistles, this time for keeps! A lot of research has to be done to make sure this is a good fit for Shawna and that she will have lots of room to expand her abilities.
We continue to be thankful for the blessings we have recieved from Gods hand and contiue to be strenghtened by your prayers and support......Thanks Al, Deb, Shawna, and family

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.

1 year

Good morning all. Today will most likely be a day of reflection, as we celebrate life. A life given back to Shawna by our gracious Father. Yes the events of this day remain a vivid picture in our minds but we hold fast to the riches we were given during that time of need. We continue to be supported by the communion of saints and our family and friends to the effect that we truly know we belong to our faithful Saviour.
Some fantastic things have happened to Shawna in the past two weeks. Shawna enjoyed 9 full teaspoons of applesauce in one setting. Her tongue is starting to work better as she swished the applesauce around in her mouth and swallowed successfully. She agreed to each teaspoonfull and opened her mouth to receive it. This was a huge success and Shawna was very excited about it. Another important development was getting Shawna onto her facebook page. She was very excited as she began to read her messages on her wall and inbox. It takes a great deal of effort for everyone who assists her with this to make sure her wishes are followed.
Its been quite cold lately and as a result we have not been taking her out anywhere except appointments. She already went through a bout with stomach flu. With round the clock monitoring she pulled through that episode. On this Wednesday she has an appointment with the neurosurgeon Dr. Wells to see if anything needs to be done regarding the right ventrical enlargement in Shawnas brain. He may want another CT scan done as the last one is now two months old. At least we are started on a pathway to explore why her tone on the left side is so intense.
We've been trying new physio things with Shawna. One that she has been successful with is getting her to initiate rising from her chair or bed and sitting back down again. We bend her forward and give her our arms for her to pull herself to standing and then hold her shoulders as she breaks tone in her knees to sit. She has been getting faster and faster at this and it makes transferring her a lot easier. Another thing we did was have her on her stomach an try to have her in a crawling position. This was not very successful as Shawnas face was pressed into the mattress and she was not comfortable with that position. Later she (5 hrs later) she became sick from that exercise. We will have to wait for more equipment to facilitate this procedure. All in all we continue to receive many blessings from the hand of our Heavenly Father as we continue on the path he has chosen for us. Thanking you again for you prayers and support. Al, Deb, Shawna and family

day 352

Good morning all. When you look at the days gone by it seems like passing by in a high speed train. I can hardly believe that in two weeks we will be 1 year to the date of Shawna's accident. I must say that there has been no shortage of emotional and physical help from Family, Friends and the Communion of Saints, without which we would most assuredly have been swept away. God is an awesome God. He continues to bless us with continued healing and strengthening. Shawna continues to struggle to make consistent sounds. Some days are better than others and some events trigger louder responses. She definitely has a good sense of humour and laughs easily when her brothers clown around with her or themselves in front of her. When she's watching a show she will become deeply involved and will also laugh almost instantaneously at the punchlines. One thing that has been a good investment has been getting the wii system for her therapy. Although the others(myself included) would like to play we first have to do some hand over hand sessions with her. She is very intense, and esp her right hand is right on time and tenses to hit baseballs, tennis balls, music chimes, and especially boxing which she laughs continuously as we decimate her opponents.( thats probably why I'm late on blogging) She enjoyed her birthday with many visitors, cards, and well wishes. I won't lie that she enjoyed it tremendously because the days after she was quite downcast, and pretend sleepy when the therapsits came. This may have been because she remembers her other birthdays and the realization of her limitations at this time in respect to them. We seem to have crossed that bridge again though and she's back to her "old" self. The occupational therapist as well was quite excited to have the wii accessible for her and they use it often for her therapy(I think they just like to play too). Shawna is starting to point with a pointer to smaller items and this is very encouraging for her as the link to communicating becomes stronger. For physical therapy shawna continues to bike, although the tone continues to make a mess of it. We continue to stand and sit her. A new thing we do with her is having her sit and holding her arms in front of her to help her to rise to standing. We wait quite a while for her to pull on our arms and she straightens her legs on her own. This is just another small step in relearning how to stand up. We finally recieved the results of the CT scan done in early December because of the increase in left side tone. Although I have personally not recieved a copy yet, we have made short work of arranging appointments to deal with those results. Its frustrating that it takes so long for results to come to anyone when they are on an outpatient basis. If Shawna was still in the hospital they would have been deeply involved in a plan of action the same day the CT scan was done. According to what has been read to me by our family doctor and the physiotherapist the main findings of the CT scan was that the left ventrical has decreased in size but the right ventrical has increased. We would have expected a decrease in size at the year mark because thats how long it takes. The increase in the right poses a problem. That is most likely the cause of the marked increase in left side tone as the right side of the brain would be under pressure, which is the side that controls the left side of the body. A referral has been made to Dr. Wells at the General to see if anything should be done about this. He may suggest that a shunt be placed in the ventrical to drain it as the normal drain may have been damaged by scarring. Although it is a scary thing to think Shawna may have to have another brain operation, we realize that all things are not in our hands but remain in the hands of our Heavenly Father who sustains and provides us with all things necessary for body and soul. Thanking you again for your support and prayers. Al, Deb, Shawna, and family

(Day 334)

Good day all. Shawna has continued to make good advances in communication. She is definitely good with pointing at pictures and words using a drum stick. She even named her puppy using this form of communication. We received a gift of a beautiful white male shnauser mini mix. His name is Q-tip. He's 5 weeks old and hopefully Deb and Jessica are not alergic to him as Shawna and the family are already quite attached to him. He sits and sleeps very sedately on Shawnas lap while she carefully pets him. Its an amazing form of therapy. There isn't much therapy for the next couple of weeks but we have our hands full with visits and therapy we can do with her. Not includng the puppy training. The doctors still haven't given any instructions for the increase in tone but the physiotherapist has given us a stimulation machine where we attach probes to her right back muscle to make the left side release. This has proven to be very effective in reducing the amount of tone that is present in her left side. We hit a bad spot with the biking as Sawnas tone increased to the point she couldn't do it by herself anymore. Weve changed the way that we do the range of motion exercizes involving her legs and she has again been putting in some very good days on the bike. We remain thankfull to our Heavenly Father for what he has given and continue to thank you for your prayers and support. We would also like to take the opportunity to wish you all a blessed Christmas celebration and God's continued blessing for 2009. Al, Deb, Shawna, and family