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.

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.

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.