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.

Sunday, 1 March 2015

Reducing frustration, 1 ball at a time

When we adopted our son 2 1/2 years ago, at 2 years of age, he struggled with almost everthing and many of our friends and family thought of him as difficlut to love.  With severe sensory issues, autism, epilepsy and a chromosome deletion everything in his life triggered screaming, raging and head banging.  Our sons abilities were extremely delayed, he wasn't walking or standing, could only sit when propped up, he could not speak and his feeding was similar to a 6 month old.  Existing took major amounts of energy and he slept the majority of the days and nights only waking for nourishment and a limited amount of interaction before the screaming, raging and head banging returned and the need for more sleep.

This little boy only had one thing that made him the slightest bit happy, so we knew that we had to work with this interest if we ever hoped to have a happy boy.  The slightest bit happy meant he wasn't screaming, raging or banging his head for a couple minutes while we tried to interact with him.  We needed to meet our son where he was at, and progress from there.  He was able to hold a ball and enjoyed watching us play with a ball.  We would have mutliple very short sessions throughout the day playing with a ball building slowly and steadily on skills and language.

Speech increased as we described everything, starting with single words, and increasing the number of words.  Ball, roll, throw, roll the ball, etc.  We used "picture cards" and "sign language" while verbally speaking hoping to make a connection.

Strength and coordination increased as he went from holding a ball, to moving to reach for the ball, to rolling, throwing, catching and kicking the ball.

We varied the balls, shapes, sizes, weights, textures and colors which built on the strength, coordination and topics for speech.  We encouraged him to play with siblings and pets,  with the balls.  When we attended therapies we had already started developing a pathway for the therapists to reach our son which they were able to work from.

From starting with a simple ball 2 1/2 years ago he is now able to play with many other toys and work through his therapy sessions working on a variety of skills.  He is still substantially delayed but he is making huge progress from the little boy that spent the day screaming, raging and head banging.
We will still resort back to that ball whenever we are working on a particularly difficult skill.  Most recenty we took 2 soccer balls to the playground hoping to work on social skills with peers.  Today there were 3 other young children and when they saw us coming with 2 balls they came over (with their adults) wanting to play.  All the adults encouraged the children to take turns and they all enjoyed playing together.  Having 2 balls made it easier so each child had more turns so nobody lost interest too quickly and if our son decided not to have anything to do with sharing at least the other children could use the 2nd ball.

All the hard work from therapists and family, that started with a simple ball, is paying off.  People regularly comment on what a happy little boy he is and the head banging, raging and screaming has dramatically decreased.   Finding that interest to build on took time but was well worth the effort and throughout his life I believe we will be looking for more interests to build on as we develop more skills.

Friday, 20 February 2015

Substituting art for therapy

We have been working our way through the kindergarten level of the Home Art Studio.  I like when we have activities that incorporate many of  our therapy and educational goals so the kids don't realize they are working and this weeks art project fit right in (with minimal modifications).  Today's project was a Van Gogh inspired Sunflower picture.

Before starting this project we went for a walk and discussed the seasons.  We made a point of noticing that spring is coming and plants are starting to sprout.  When making our picture we discussed how the sunflower seeds that we eat are actually the seeds for the plant to reproduce.

Occupational therapy
Cutting straight lines and circles
Tearing paper to make leaves
Glueing and working on hand strength by squeezing the glue
Using our pincher grasp picking up sunflower seeds and placing them in the center of the flower

Speech therapy
We worked on "prepositions" when discussing where to place the various parts of the picture - beside, next to, in front of, under, etc.
Also we worked on following directions from 1-3 steps depending on the child

Shapes - circles and rectangles
Length and size (in relation to the stems and circles)
Counting (circles, flowers, stems, and sunflower seeds that we placed in the center of the flower)
Patterning when painting the background

We have really been enjoying the Home Art Studio as a way of creatively working on our goals and the kids are extremely excited whenever they see "art" listed on their daily schedule wondering what this week project will be.

Thursday, 19 February 2015

Success at Swimming with Sensory Stimulation

Shopping at Costco recently I came across swimsuits that are perfect for my daughters who have sensory issues and still wear diapers.  The best part is they only cost $15, not an extreme "special needs" price.  Finding swimsuits that work for special needs can be a challenge and coming across these for such a reasonable price was enough to make me do a "happy dance".

I love these swimsuits because they are 2 piece making it easier for the girls to pull the bottoms down when we are working on toileting and the fact that the shorts style modestly covers their diaper.  The short sleeve surfer style shirts are snug and calming, stylish and also provide UV protection when in the sun, which is huge for my very fair skinned children.  The boys also wear surfer style shirts to help them with calming along with their swim shorts.

The new swimsuits got me thinking about swimming and the many challenges for children with sensory issues and other special needs.  It seems like my bunch want to make sure we experience it all when it comes to swimming challenges so I have had to come up with some ways to deal with things.

So much motor planning is required for swimming and when this is a difficulty you may need to find an instructor who can break down the strokes and teach in a way that your child learns.  Private lessons may be required as a group lesson may just be too much.  For us we have been doing weekly private lessons for the last year and a half and for some the progress is extremely slow.

I don't know about you but I find swimming pools to be extremely loud quite often and the experience can sometimes be overwhelming.  The running, squealing, splashing and the noise of all the water features can be a lot for people with auditory and visual processing challenges.  When we go swimming we try to find quiet times to avoid a lot of the additional stimulation but have found ear plugs for swimming and goggles that are tinted can also be helpful for these situations.

The temperature of the water can also be a challenge, quite often my kids are happy in the tot pool as it's warmer than the main pool which is often too cold for them.  Also getting their face wet is a big challenge for a couple of the children, so we play a lot of games working up to this and hoping to desensitize them both at the pool and in the bathtub at home.

If we are swimming anywhere but the pool, water shoes are also required, if I want the child to move at all.  I confess, for my child that is extremely busy and likes to run, it is a benefit him having these issues as it tends to slow him down.  The textures on their feet walking on sand or rocks is enough to put an end to the day for the others.

Another issue can be the chlorine that they treat the water with, the smell and the way that it effects their eyes can really make some people uncomfortable.  One solution is finding a pool that treats their water with ozone as opposed to chlorine.

Tuesday, 17 February 2015

Tonight's evening has a "Publication Ban"

The balancing act of parenting seems to take more effort for our family as the gap between ages and needs becomes more evident.  Having a large family comprised of both adoptive children with many special needs and birth children the gaps between their abilities seems to increase over the years. 

13 years ago when we adopted for the first time we had 5 biological children ranging in age from 5-12 and the 2 we adopted first were 6 and 11.  At that time both presented with delays but the 11 year old was functioning higher than our then youngest and the children and their differing abilities blended together.  As life evolved we adopted multiple times and the differing abilities tended to blend together up until we adopted our youngest 7, and around the same time that our older children were becoming adults. 

Now that some of our children have become adults the gaps have really become evident.  We have adult children that have graduated college or are attending college/university, ones living on their own, married and with children.  We also have adults that live at home, need a care provider when we are out, need reminders for....well almost everthing, have extreme behaviour challenges, developing mental health issues, etc.  We have adult children that require more supervision now than when they were adopted, due to later onset mental health issues, and they require more supervision than our 3 year old (with significant delays).  We also have our youngest sibling group which have abilities that you would expect for children 10 years old and younger. 

One challenge we have been finding lately is when we are planning an activity with the adult children, not everyone functions as an adult.  Sometimes we want a drama free adult evening or activity were we can all have fun together.  We don't always want to deal with the constant stress and mental health challenges.  Sometimes the adult kids want their Mom and Dad, sometimes they want an activity were they are the center of attention, sometimes we just all need a break.  Don't get me wrong, we truly love all of the family, and the majority of the family activities include everyone, however sometimes not everyone is invited.  We also understand that the individuals in the family with these extra challenges don't have control over some of their issues and if they thought that they are causing stress for us or that we needed a break from them it would upset them.

Recently we had a group gathering with some of the family and everyone that was attending was discrete about attending.  Everyone that attended left home at different times, with different stories about where they were going, the babysitter didn't even know that everyone was together.  We imposed a publication ban on any pictures that were taken.  We feel bad that we need to sneak out but also need to consider everyone else's feelings.  How would you handle this?  Would you have an all or none approach, risking adults refusing to attend?  Would you add further stress to the adults suffering already with special needs and mental health issues and tell them the family needs a break from them?

Sunday, 15 February 2015

Homeschool wrap up

We have been continuing along with our schooling and are wrapping up a few of our courses having completed and met the curriculum goals.  Each homeschool year we put a heavy push on the academic courses at the beginning of the school year with the goal of finishing some early so we can switch our focus throughout the year.  Language arts and math continue for the entire school year as they tend to be a challenge for some and my thought is if the kids can be stronger in these then learning in other subjects will be made easier.

We start the week with swimming lessons for some, we have 3 instructors and 1 assistant teaching 7 of the children and an added bonus they have the whole pool to themselves.  We are very fortunate to have this set up and we are seeing some nice progress.  With the more compromised children there is a heavy focus on safety which is really important as we live so close to the water.  2 of the girls have been making great progress and are now swimming lengths of the pool.

While we swim 2 of the others are focused on language arts and math with their education assistants.  The teens are also wrapping up science and car maintenance just studying for the final exams and will be so relieved when they are complete.  Car maintenance was a community class with their peers and is being replaced with interior design another community class which hopefully will be just as interesting.  The teens have also been taking a variety of one day community classes with their peers including food safe, WHMIS, science labs, snowboarding etc.

4 of the kids have been learning to sew and just finished making boxer shorts.

Tuesday is therapy day which amounts to an insane amount of therapy appointments, schooling in the vehicle, walks through the forest and playing on the playground at the park.  Each day at home we are also working on our therapy homework with the help of the kids education assistants.

We have been working on our baking skills and enjoying the added snacks we have created.

We are studying the life cycle of salmon again this year as we raise 100 salmon eggs to the fry stage.  Our salmon eggs have been hatching in the last few days and are now at the alevin stage.

For art the younger children have been working through the Home Art Studio program and thoroughly enjoying it.  They have been learning about prime colours and mixing them.  Also they have been learning how to handle a paintbrush and how to get different effects while painting - straight strokes and swirling strokes.  The art work they have been doing is also helping to reinforce some of the scissor skills that their occupational therapist has been working on with them.

All of the children have been learning sign language at varying levels dependent on their abilities.  Sign language is also very helpful for the children with speech challenges as it is another clue in trying to understand what they are saying.

The bulbs that we planted in the fall have sprouted and have encouraged us to plan our spring gardening program.  We recently bought some seeds to start inside and have ordered seed catalogs to plan our garden.  The teens will be working with Dad building more garden beds and designing a sprinkler system while the younger kids will be focusing on planting.