3 years

Hello out there!

I don't know if anyone still looks at this blog but since Shawna is still unable to post for herself, I thought I would update her progress so far. Progress is very slow but there still is progress. We've been tweaking the meds and still working with new ones to improve initiation and response. The most exciting progress has been in the area of walking. This summer Shawna started walking with her right leg in her Grandparents pool. It was an amazing development. Rapidly through the summer Shawna progressed to taking 100 steps with her right leg only in chest deep water. By the end of the summer we were concerned this treatment would have to stop because there are no pools with 90 degree water that are chest deep. We tried to have her walk in the shallows and lo and behold she could still do it!. Off to the Valley Park warm recreational pool for the next sessions of pool therapy twice a week. From September to December Shawna improved dramatically. She not only increased the distance she could walk being supported, but also started to use her left leg, bending it at the knee and dragging the foot to neutral position. We stopped when it became too cold to transfer from the pool to the frigid temperature outside. By this time Shawna had managed to walk 16 lengths of the pool using both legs......approx 1000 ft! Simply amazing, praise God! She now continues to "walk" on the hardwood at home which is considerably tougher to do but still manages 6 trips from our living area into the kitchen with assistance approx 30 ft each trip.
Other areas of improvement are her ability to assist in getting out of, and into bed, sitting stationary, and standing for long periods of time in a standing machine. Her ability to swallow has progressed to 20 x 1.5 mls and sometimes if the timing is right 2 teaspoons of yogurt at supper in 1/8 teaspoon increments.
Oral communication is still an issue. Shawna has been vocalizing a lot but not consistent on a "need to basis". Most of the vocalization comes from excitement and spotanaity. Communication has been very consistent with long blinks for yes and two short for no. Her friends have been able to harness this communication style and have taken her out for many trips and visits to their homes, shopping and weddings etc with fantastic results. The engagement and stimulation she recieves from these outings ususally result in her being very revved up and unable to sleep. She wakes up laughing and very excited. Shawna's ability to follow conversations has also improved. Her laughter at funny parts of the conversation tends to improve the aura and bring it to a higher plateau where everybody is now laughing and clowning around.
Shawna with Grandma Bethlehem's tutelage has been doing a fantastic amount of hand-over and independant painting lately which involves her choice of colour and textured brushes. Hopefully this can help her to develop more finite control and point/touch abilities as she continues to complete pieces for an art showing scheduled for 2012(more news to follow when this comes closer).
I have been the recipient of some fantastic two armed standing hugs lately and she does not want to let go. Her left arm is starting to get more movement as is the left leg. Shawna can easily grab something that is put before her and has been scratching her chin and head lately.
Neurologically there will be some more work coming up in the near future at the General in the ABI clinic, but first we are taking her for a trip to Florida, breaking up the winter doledrums.
We continue to walk on the paths chosen for us and are thankfull for the continued support we recieve from our brothers and sisters in the Lord Jesus Christ. We rely totally on God's faithfull promises which always guide our path. Praise God from whom all blessings flow!

Al, Deb, Shawna Bethlehem and family

2 years

Good Evening to all the readers. I know we have'nt posted in quite a while. As yesterday was the two year anniversary we thought it appropriate to make this post the last one to close off this blog dialogue. We are extremely grateful for all the helpful and uplifting messages we have read. Hopefully in the future Shawna herself can post her own thoughts on this blog.
Since the last posting Shawna did end up staying in the hospital quite long almost 2 full weeks. When she finally came home her feeding had been trimmed down to the minimum to keep her stomach from being upset by the antibiotics she was recieving. She was very weak and it took a long time till she regained her strength, almost a month. The Spinal tap she recieved was deemed to be unreliable so she was scheduled to have another performed by her neuro-surgeon, Dr Wells. When this was done it was confirmed that there was indeed no extra intra-cranial pressures that were contributing to her issues of tone. Her Neurologist, Dr. Gillett, prescribed a new medication to combat the condition of "Appraxia" which Shawna suffers from. When movements are not rehearsed, Shawna is able to do many with ease. When asked to point or move this or that she becomes agitated and stiff, and unable to comply. The meds which are slowly increased month by month to their maximum at 6 months have been giving wonderfull results to this point at the halfway mark. Vocalization has been steadily increasing. No words yet but loud sighs and laughter. Shawna has been standing by her pole while we only help her left hand to hold on, for periods in excess of 15 mins at a time. During this excercise we take away her comfort zone by moving her right hand from the pole and leaving it in midair to see what she will do. We also push her sideways to help her learn to make the minute adjustments she requires to remain standing. In all these exercises she continues to do very well, especially maintaining her standing posture. We also assist her to walk across the floor from the livingroom to her bedroom and kitchen area. Shawna maintains her own weight over her legs, but we support her side to side, and slide her legs across the floor. Her speed and strength going from sitting to standing is steadily increasing, as well as her ability to relax and place her feet on the floor working against the tone. On the reverse side her ability to go from standing to sitting is almost getting perfect. She is now able to hold up her head unassisted when you pull her up from lying down to sitting. She is easily able to center her head but still favours looking to the left. Her eyes track left to right and vice versa in very quick motions now. Her eye to hand co-ordination has been steadily increasing. Somehow on Sundays she has always managed in the last month to grab my tie when I assist her into her wheelchair. She smiles immensely at this small success. Once just recently when Deb and I were assisting her to get to bed, she reached up and removed her own glasses as if "here I can do this to help you guys". We were amazed! Once she reached up and removed Deb's glasses too. The therapists working on helping Shawna learn to swallow have been stimulating her mouth muscles for quite a while with some success, not a huge breakthrough but consistent. Another really good development has been the use of her computer. We have several new attachments which are making the use of the computer from her wheelchair very successfull! It may take a long time but there is promising developments in that area. Her computer will make it possible for her in the future to communicate with others and regulate anything that uses a remote in the house. Shawna is very consistent with her Yes/No eyeblinks, and communication showing her cognitive ability has been fantastic. Some of her therapy sessions have been happening at night now when she is very awake and ready for family things. These sessions have been integrating her friends one at a time to show them her abilities and help them to feel part of the solution, making it very easy to socialize in other situations.
The two year milestone again brought many memories to the foreground, but the most important one is how we were upheld by God's almighty power. Last night we read with Shawna and our children from Isaiah 40, where God gives strength to the weary and increases the power of the weak. The chapter ends with the words that those who hope in the LORD will renew their strength and soar on eagles wings. Looking back now on this journey we can see how we've been strengthened and protected by God's gracious providence. When I talked with Shawna about how we found strength from this portion of God's Word, she vocalized her agreement and smiled at me as tears made their way down my cheek. We ended the day with singing Hymn 9 vs 5

They shall mount up with eagles' wings;
Unwearied they shall run.
They'll neither falter nor grow faint
As they in faith walk on



Yours in Christ
Al, Deb,Shawna, and family

1 year + 8 months

Good day all. We've had a small setback this week as we are in the hospital with Shawna again. Two weeks ago She had a small siezure which was followed by increasing tiredness and sleepiness. Four days ago Shawna became unconscious during her therapy session at home for approximately 25 mins. She could not be roused during this time. She was hospitalized that evening and a series of tests and monitors performed. She had another siezure on Wed. morning for about 5 mins. By this time the doctor had determined that her bloodwork was good, in fact her kidney and liver functions had returned to normal finally after medecine changes. The Urinalysis however confirmed an infection which they promptly started to treat. There was an advantage to Shawna being hospitalized in that she could now recieve certain proceedures which we've been waiting for since May(good health system). Shawna went for a CT scan yesterday which showed no internal brain changes since Dec 08. That was good news of a sort. She recieved a Spinal tap this morning which showed that the intracranial pressure was normal and not elevated. Unfortuneatly the Dr. could not withdraw 30cc of spinal fluid which was required to test if lowering her brain pressure would lower the amount of tone in her body and increase her cognitive function. Since the pressure was considered normal the tap was discontinued for Shawna's comfort. She is now resting and has to lay flat on her back for 24 hrs and thus will not be coming home till Saturday morning. It is quite possible that all the symptoms she was experiencing were from the infection.
We are thankful that we could experience one last fling at summer with Shawna at Long Point. Although our test beach wheelchair did not arrive we managed to get Shawna down to the warm beach and lay her in the sand where she could let the sand trickle through her fingers. Although Gramp and Gram's pool has been closed for the season Shawna's pool therapy can continue at home in the hot tub. Shawna continues to pull herself to standing from the wheelchair with great effort. We have also patern walked her for 40 ft to which she smiled immensely for hours. The use of the MyTobi computer has been integrated into therapy and Shawna continues to use it successfully. She also continues to do swallowing trials. Shawna also spells words and phrases with her eyeblinks using flipcharts of letters. One of her first phrases was "Big Brother Will". That was immediately follwed by a visit from her big brother two days later as she requested. We are still blessed with small advances every month and continue to rely on our Father's hand for our daily needs. Thanks for your prayers and support. Al, Deb, Shawna, and family

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

1 year + 5 months

Good morning all. Shawna continues to improve and we are constantly reminded that God is in control and continues to provide us with his blessings. Shawnas standing at the standing pole has continued to improve and there is now a new variation to it. We park Shawnas wheelchair about 1 ft away from the pole, put her hands on the pole and with little to no assistance Shawna pulls herself to standing. This is a huge development and now we will have a standing pole installed by the w/c (toilet) to facilitate bathroom use. Shawna has been out in the community a lot and it shows by her level of excitment when she returns. She's been to soccer games, Port Maitland pier, mudcat activities and more. We've had a few more stressors especially when our son AJ was involved in a motor vehicle accident recently. We were called to the same hospital that Shawna went to, where he was sent for observation. Thankfully he only had a minor concussion and no further injuries. God is merciful and we have been spared additional hardship. Right this instant we are in the middle of our Buist family reunion at Selkirk and Shawna is enjoying this trip immensely. She was exicited about the trip before we left and the excitement continued to ramp up as we got closer. We bought a toyhauler/camper which has a ramp and lots of room for her hospital bed. Shawna enjoyed watching the little children play at the beach and feeling the sand in her hands. She became a bit upset during this time as tears came to her eyes but she quickly became happy again as Brandon Oosterhoff wheeled her speedily around the campsite. She enjoyed sitting around the raging campfire. She went to bed smiling and laughing and had an unevenfull night sleeping soundly. On Thursday morning as she was waking she started laughing before she even opened her eyes. The rest of our holiday has also been very enjoyable as Shawna enjoys the company of her family and extended family. We haven't had as much rain as the weather network predicted and certainly not near as much as last year when the bottom of the group site became a 1/4 acre lake and the campers had to be towed out by a tractor. We are thankful for the blessings we have received from God's hand and continue to rely on him for Shawna's continuing recovery. Thankyou also for your prayers and support. Al, Deb, Shawna, and family

1 year + 4 months

Good morning all. I hope everyone is enjoying this beautifull Sunday. Shawna continues to recieve God's blessings as she continues on her road to recovery. Albeit the progress is quite slow there is still progress. With physio She is able to stand on her own for 1+1/2 minutes holding on to a standing pole with both hands. The physiotherapist pushes her slightly to get her off balance and watches to see if she makes necessary corrections, which she is able to do. As a result Shawna has been able to stand and give her family members a full hug.We finally met with Shawna's neurologist who made a whole bunch of reccommendations. One of these has been to adjust her meds slightly to see if that would reduce the dystonic(tone) on her left side. So far, after 1 week of this treatment the tone is visibly getting less and less. There is a down side to increasing these meds. She must be regularly monitored by blood and urine samples to make sure her liver and kidney function are not compromized. We continue to pray that everything may work properly. Pool therapy has been quite a success. Shawna has been able to move her left leg in the bouyant environment without tone present. When the kinesiologist got excited about that and Shawna also became excited and was smiling all the way home. The pool at Grandma and Grandpa Bethlehem has been made ready for use with reinstalling a heater unit, and the hot tub at our home renovated and repositioned so that Shawna can be lifted in. The other modes of therapy have also continued with many variations. The most important has been a big brainstorming session on how to use the mytobii computer so that Shawna will not become frustrated . At first they will only use three screens and progress from there when they can see purposefull use. One of the screens is a tv remote which is actually can turn on the tv and adjust settings through the computers hardware. Another screen is a simple yes/no board where they can continue with communication instead of eyeblinks. The last screen is a music choice page where Shawna can choose her music the computer will play. The computer is capable of so much more than this but it is important to start out slowly and build Shawnas confidence in using this as a communication tool for hopefully using in community settings. There are many more outings into community planned for her as the weather contiues to improve. She has been getting a bit of sun outside as she watches the garden being planted and construction on the new ramp to the front door. Our children all enjoyed an enriching experience last weekend as they banded together to take care of Shawna for 4 days as Deb and I slipped out of Canada and into Holland, Michigan for the weekend. There were many notes to read and schedules to maintain as Deb wouldn't leave until all the finest details were covered including lining up extra psw's and grandparents. It was good to get away for a few days and sort of build back up the reserves as we ramp up for a busy summer. We couldn't do many events last year but we have a full plate this year. Lots of Soccer, Buist family camping and cottaging to mention only a few things will keep us quite busy. We continue to rely solely on God's providential care as he continues to care for us. Thankyou for your paryers and support Al, Deb, shawna, and the family

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