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Saturday, 27 June 2015

Hospital visit anxiety

This week brought us to Children's hospital for more testing, with half of our complex sibling group (the other half have their turn next month).  Having a large siblilng group with multiple challenges has presented quite the puzzle for the medical team working with our family.  It seems whenever we visit a doctor, which seems like always, we leave there with more questions and upcoming appointments than we started with.  The added challenge the doctors face is that the the kids are adopted making it difficult to get birth family information which would be extremely helpful with such a complex mix of medical needs.

For us too get to Children's hospital it takes 6 or more hours depending on how long the wait is for the ferry.  We usually leave the day before our appointments and return the day following our appointments and add some fun into our time away.  Our son has extreme anxiety and was terrified about the idea of going to the hospital yet again.  We are fortunate that so far none of the testing has been invasive however in the past we did have one traumatic day when they were trying to do blood work on all 7 young screaming children and couldn't get veins in any of them which resulted in them giving up and having to try a different day.  This event has scarred our extremely anxious son and no amount of preparation seems to relieve his fears.  We tried social stories, talking about what was going to happen on our visit, talking about why he was scared, we tried focusing on more enjoyable activities while away however nonething seemed to help him even combined with his on going anxiety medication.  Do you have any tips on reducing a child's anxiety?

While on the ferry we listened to presentations by the Naturalists they had on board which was a nice diversion for the kids.  The presentation went well with our planned afternoon activity of visiting the "aquarium".  The last few visits to the aquarium it has been extremely busy but this time was great as the crowds were small.  The kids loved the dolphin show and we were fortunate that the staff recognized the fact that a couple of the kids were in wheelchairs and provided us with exceptional seats.  One daughter was truly amazed and squealed with joy every time the dolpin jumped.  From the aquarium we set off to our hotel and spent the evening in the swimming pool.  This long day with different activites was very beneficial in keeping the kids awake as they needed to be sleep deprived for their testing at the hospital and were only allowed 5 hours of sleep.


At the hospital 3 had sedated sleep EEG's and the good news is 2 actually showed seizure activity.  The kids have seizures regularly and every time they have had an EEG nothing has shown even though doctors have witnessed them having seizures, so seeing the activity on the EEG is apparently a good thing.  Our 5 year old had a lot of difficutly waking up from the sedation and could not sit or stand unassisted until the next morning.  We then met with the neurology and genetics doctors were they decided more testing is in order.....looks like MRI's, spinal taps and cardiology are int the childrens future.

Friday, 8 May 2015

EVEN IF THEY ARE CLUELESS

Some days it seems as if everyone has an opinion on how our children should be raised and feel the need to tell us everthing we are doing wrong.  This unsolicited advice comes from strangers, professionals, friends and family but most don't have a full understanding of our childrens/families needs.


Recently one child had to have an ultra sound of her bladder and kidneys the technician requested she empty her bladder, this is something that she does not yet have control of.  Instead of the health care professional accepting that this is our daughters reality she goes into a long rant as to how they are able to retrain stroke victims to control their bladders so why haven't we taught our daughter.  Even after explaining that our daughter also doesn't have the cognitive ability to be trained this way the technician could not or would not let this go.

Therapies are another issue of great concern to the people in our life.  We get the "if only you took them to more therapy they could overcome their challenges" and we also get the opposite "your child (children) need time to be kids, they would make far more progress if you just stopped all the therapy".  The reality is I would love it if they didn't require therapy but they do and we are having it provided for them hoping for positive results.

As parents we also get blamed for their various challenges and I know we aren't the only ones who get this, many parents get blamed for causing their child's conditions.  It's because you didn't do ____ correctly or if only you did ____ differently.

When it's been a particularly long day...week... month... it can be difficult too hear the words of a well intended person without replying in a nasty way.  Sometimes I need to pause and consider where their advice is coming from and are they trying to be helpful or are they just being nasty?  Is there anything I can learn from the information they are sharing?  I also need to remind myself, especially on the stressful days, that they have a right to their opinion EVEN IF THEY ARE CLUELESS.  I also need to remind myself too speak to others how I would like to be treated because others also have exhausting and stressful days.  We need to give each other a break and keep our unsolicited opinions and advice to ourselves.  Telling people that everything they do is wrong or their fault doesn't benefit anyone.  Offering to help or simply acknowleding the effort a parent puts in would be so much more beneficial.  I would like to start by acknowledging all of you hard working parents "thank you for everything you do for your child (children)".

Saturday, 18 April 2015

6 hours on a deserted island

Today we met up with 2 of our adult sons, their lovely wives, our beautiful granddaughters and their dogs and went to a small island that is all parkland.  We were able to access this island by a small boat that transports 24 people at a time.  The plan was to spend the day geocaching, hiking and have a campfire so we could roast hotdogs and marshmallows for our lunch.


For most families this would mean throwing together a picnic and hitting the road however for us it's not that simple.


We were meeting at 10:00 am, an hour from our home, which resulted in a 6:00 am wake up call for Mom and Dad and hitting the ground running.  Each morning we try and get up beofre the kids so we can shower, dress, prepare breakfast, etc. before the kids are up.  On top of the usual routine today we had too pack for the day.

So what's needed for 6 hours on an island, without any amenities, for our large family?


Food....lots and lots of food.  6 dozen hotdog wieners, 4 dozen buns, condiments, 4 bags of potato chips, 6 bags of marshmallows and a flat of water.  Plus daily medication, diapers, wipes, multiple changes of clothes, first aid kit and sunscreen.  A plan of how and where we will change the childrens diapers as public washrooms/outhouses don't accommodate 10 year old "infants".  Hats, sunglasses and hoodies to help with all of  our sensory issues.  We also opted for a wagon and strollers instead of the wheelchairs (our wheelchairs don't do well on forest trails).

Once we had the basic prep for the day done it was time to get the kids up, on top of the regular routine we had....3 wet beds and 1 soiled bed (with added finger painting) resulting in 4 unplanned showers, 4 linen changes, 2 extra loads of laundry and a lesson on wall cleaning for our young artist.  One teen returned for more appropriate footwear, an adult child needing lessons on clothing choices for a warm spring day, a discussion with an adult child on why she must pack sanitary products for a day out and one teen strongly encouraged to eat breakfast.

Once load into the bus and 10 minutes down the road we needed to turn around as I noticed that the 4 year old had 2 left shoes.  We get going again trying to make up for lost time and come around a corner to a complete traffic stand still with vehicles turned off.  Nobody is going anywhere because the air ambulance has landed on the highway for a medical emergency.

We finally arrive at the boat, that was nice enough to wait for us and we head to the island for some fun.  While at the island we explored the shore line, found a nest of snakes (which was exciting for some), a couple climbed a tree hoping to find a geocache, found another geocache, hiked, played and ate.  We were thankful for the first aid kit when our young adult cut the tip of her finger exiting the outhouse, we really don't know how she managed that. Overall it was a very enjoyable day and well worth every minute of work getting there.



Tuesday, 7 April 2015

NO REALLY, SHE'S NOT!!!!

"Oh she is so sweet" have become the words that irritate me beyond belief.  Our daughter has FASD, low cognitive function and seems to be developing some severe mental health issues, doctors are leaning towards a diagnosis of schizophrenia.  As we are the people around her constantly, we get the brunt of her mood swings and it is especially irritating when we have been verbally attacked for weeks from her and then someone who doesn't know us that well says " I was talking with....she is just so sweet".  Comments like these make me want to scream NO REALLY, SHE'S NOT!!!!

It's not that I don't want people to see the nice side of her or to have positve thoughts about her.  It's that we haven't seen that side of her for a long while and would love to have a break from the crazy making.  When you add a mental health low with PMS everyone should run for the hills!  I want to run for the hills but can't get away.

Working with her physicians and mental health team we have been making progress at helping her however it is just as important (if not more important) to help ourselves and the rest of the family.  If the rest of the family isn't strong and well cared for we won't have the strength to support the ones affected by mental illness.


1. Accept your own feelings and know that you are not alone.
It is natural to feel many different emotions when a loved one has a mental illness.  Other people experience the same challenges and complicated mix of emotions.  Let yourself and family feel whatever they need to feel.

2. Learn more
Take time to learn more about mental illness.  This will give you a better understanding of your loved one's experiences and help you see what they may be going through.

3.  Stay connected
Embarrassment, social stigma and fear can stop many family memebers from seeking help when a loved one has a mental illness.  But that can isolate you at a time when you need the most support from others.  Talk to trusted friends and family and let them know what you're experiencing.

4. Join a support group
Support groups are a good place to share your experiences, learn from others, and connect with people who understand what you're going through.  Find the support that works for you, it could be a group of friends, a support group or a counsellor.

5. Take time for yourself
If you are caring for a loved one, your responsibilities may use up your physical and emotional energy.  It's important to take time for yourself and the other members of the family.  It can help you recharge and give you a more balanced perspective toward any challenges you experience.  Schedule opportunities that allow you to relax, have fun and get away so you can come back to your loved one with a healthier outlook.  You can't care for someone else if you haven't cared for yourself first.

6.Seek help for yourself
Caring for a loved one who's unwell can be stressful.  Seek help if you find your own well-being slipping, and encourage family members to seek help if they need it.  Mental illness can have a big impact on family relationships.

7. Develop coping strategies for challenging behaviours
There may be times when a loved one shows strange or challenging behaviours that can make you feel confused, embarrassed, or scared.  This can happen in public or in private.
- Make a plan as a family how to best deal with situations
- Understand that their behaviour is not personal, even when it feels personal.

Friday, 3 April 2015

Life skills as play

We have been adding "life skill bins" to our home school curriculum.  Many of my children have limited abilities and it takes them a long time to learn various skills so it is important to teach them practical life skills early.  Most recently we added a "laundry life skill bin" - we purchased 2 small laundry baskets from the dollar store and labeled one "lights" and the other "darks".



 We then included 12 pairs of socks, 6 white pairs and 6 black pairs and also a clothes line and clothes pegs.  To aid with the imaginative play we also made a washing machine out of a cardboard box.



During life skill class we practice sorting the socks, darks and lights.  We also hang them on the clothes line with the clothes pegs which is working on our pincher grasp and coordination.



 Matching the socks into pairs and rolling them together is another skill we are working on.


While "playing laundry" we also practice our counting, expand our language skills and have a lot of fun.  Our laundry bin also has a folding option with multiple coloured face clothes for sorting, hanging and folding.  Once these 2 options are mastered, outgrown clothing will be added for practice and eventually the kids will take over doing the laundry....hopefully, years down the road.  We also reinforce their sorting skills every time they change clothing by having laundry hampers marked "lights" and "darks" for their dirty clothing and the adult changing them oversees the laundry being put in the correct hamper.

Stay tune for more life skill bins.

Tuesday, 31 March 2015

Naomi needs a liver transplant

It has been determined that my granddaughter, currently 5 months, will require a liver transplant before she turns 1. The last week was spent at the Edmonton Childrens hospital.  My son, daughter in law, granddaughter and both grandmothers (myself included) travelled the 2000 km for a week of testing, teaching and information regarding the process required for transplant and organ donation.

We started the process with more testing for Naomi, she had a MRI, CT scan, ultra sound, X-rays, ECG, echocardiogram, blood work....lots of bloodwork, so much that they had to take it over days because they maxed out the allowable amounts to be drawn each day.  After the testing it was appointment after appointment meeting with each medical professional that makes up the transplant team.  The occupational therapist and neuropsychologist both did base line assessments on Naomi so they will be able to determine any loss she may have as a result of the disease progressing or the surgery.


We met with an infectious disease specialist to discuss accelerating her vaccines as her immune systems will be severely compromised after the surgery and for the rest of her life.  After transplant Naomi will be put on anti rejection medication which will help with the transplant however also makes her vulnerable to every virus out there.  The infectious disease specialist also discussed with us the many potentially dangerous situations Naomi will need to avoid, severely limiting contact with anyone with a virus, avoiding contact with birds (including chickens, her other grandmother is a chicken farmer), reptiles (her parents will be getting rid of their geckos), avoiding eating any game, never able to get a "live" vaccine after surgery, etc.

We met with the transplant surgeons to discuss the process, timing and risks involved.  It has been determined that ideally Naomi must grow for the surgery to have a better potential for success.  It is preferred that transplant patients weigh at least 10 kg and Naomi is currently 6 kg.  As the liver disease progresses the ability to grow is severely limited as the body is not able to digest the fats in the food and the body stores fluids around the damaged organ limiting room for food.  We have already been seeing signs of these issues for Naomi so the doctors will need to continue monitoring her trying to determine the optimal time for surgery.  A dietician is also involved to guide optimizing Naomi's feeding for the best growth potential.  In the future Naomi will require tube feeding so she can be fed 24 hours per day but for now she is being breast fed and getting a high calorie supplement that doesn't require bile to break down the fat.

A cardiologist and neurologist both met with us after testing as they both look for any possible risks that might affect the surgery outcomes.  An allergist was brought on as Naomi had a reaction to one of her medications after the last surgery and they need to determine all risks before the next surgery.



We had a teaching session that explained all the steps involved in waiting for a donor, the type of donors, getting the phone call saying they have an organ match, surgery, and the steps to recovery.  When the surgery does happen Naomi will be in the hospital for 4-6 weeks, then discharged into the hospital community for a couple months before she is able to return home.

With a liver transplant there is the option of having a living donor or a cadaveric donor, your liver is the one organ that regenerates and the part that is removed will grow back.  Both of Naomi's parents started the process to determine if they would be an organ match for her.  Meeting with the living donor coordinator we learned that a living donor needs to be 18-55 years of age, have the same blood type, weigh 60kg or less, not be overweight, have a small frame, healthy habits and good health.  The testing for the donor is similar to the testing for the recipient as the goal is success for both parties.  While in Edmonton it was determined that Naomi's father was not a good match due to his stature but they are still testing her mom.  Ideally parents aren't desired donors as they are so concerned about their child that they don't make very good patients and look after their own recovery.  The recovery time for a donor is 3 months, meaning full recovery by 3 months.

We finished our week with a visit with a social worker who was there to share what resources are available and things to consider.  Naomi and her parents will be moving to Edmonton for 3 plus months, her parents will need to be available to support her limiting their ability to work, they will need to set up a temporary home in Edmonton while maintaining their current home, if Naomi's mother is the donor she will also need support to help her recover.

Tuesday, 17 March 2015

Hockey, swimming and Special Olympics

With the close of this season of sports, our young adults involved in Special Olympics have been participating in the end of season competitions.I really like Special Olympics, all the people there are so loving and accepting, having been too many local practices and then competitions with multiple teams I believe this is the way most of the groups are.  This applies to the many dedicated volunteers and the athletes alike.  There aren't to many places that you can walk into that everyone, even strangers, are excited to see you and will come up and give you a hug.

Ring hockey recently had a tournament and then a fun game against our local junior hockey team.  At the tournament they played against multiple teams unfortunately the teams were all ranked higher than them and they didn't really have a chance.  The wide point spread didn't seem to deter any of their effort or enthusiasm while playing.  The week after their tournament they had a game with local junior hockey team as a fundraiser to support their team.  The young men from the junior hockey team were amazing with our athletes.  They played to the teams level, maybe even slightly under, yet didn't make it obvious, engaged our team team and thoroughly seemed to enjoy playing against our team.  When either team scored a goal, which didn't happen often for the guest team, everyone (didn't matter what team you were on) was giving high fives, much to the surprise of our guests.


The kids also participated in a swim meet recently and we were completely surprised when our daughter came home with a 1st and 2nd place ribbon.  Each athlete had the opportunity to sign up too race in what stroke and length of swim they felt able to compete in.  Everyone that attends practice for whatever sport is able to participate in the competitions and everyone has the opportunity to participate the same amount.  The cheering was incredibly loud for every swimmer as the other participants encouraged one another.  It was amazing too see athletes that really seem to struggle with their limited mobility on land, get into the water and enjoy competing no matter what their ability level.  It did not matter whether they won or lost they participated, everyone cheered for them and they were proud of their accomplishment.

In our area some of the athletes participate in every sport available but for our young adults we limit them to 2 per season as we try to keep a balance with everything in our life.  I strongly encourage you to check into Special Olympics if you have someone in your life that would benefit from joining or if you are sports minded and willing to volunteer your time.  For now we are heading into softball and soccer season so you will see at the fields.