Day 862 & Day 863: Wonderland!

We have had some technical difficulties with the blog. Thanks for waiting! Here is what Madison has been up to the last two days:

Thursday:

Madi had a very busy day – but she was up for the challenge. Her energy was higher, she had colour in her face, swelling almost down and she ate everything in sight.

Mommy booked this weeks therapies well before Madi was ill, so it was a tough decision to move forward with things or not- Madi is responding really well to her meds so we are happy that we continued on with our own version of “an intensive therapy block”.

Her day started with Judy working on floor transitions, crawling and feeling her feet flat with different sensory inputs.

With all her swelling, Madi has not been able to wear her knee imobolizers for over a week – so as soon as she got home and Mommy saw no swelling she put them on.


After some rest and stretching, Madison went to visit Jo-Anne. Madi worked so hard on different balance and strengthening exercises it was so impressive!




Madi and all her friends work so hard each and every day – they try so hard to achieve things that come natural to other people. So it’s nice when we can step back and do something fun to celebrate all the hard work and have some fun! Madi and her buddy Ben went to Wonderland and Madi went on her first roller coaster ride!


Friday:

Madi had her last session with Judy this morning of her ABM block. They focused on sitting positions on the floor, squatting to stand and trying to achieve more rotation in her trunk. 


Madi & Jack had very different schedules this week so they loved hanging out at the house this afternoon playing together and helping Mommy & Daddy set things up for Canada Day celebrations tomorrow!

Day 861: Back to Business

Madison has now been on her new meds for 3 days and is starting to get back to her old self. She is still a bit swollen and has moments of exhaustion, but her personality and eagerness to be busy is back! Something that is now part of her day is what her doctor called “hangry spells”. We battled with Madison before to eat and now she can’t stop eating and has moments of emotional distress if she doesn’t get to eat as quick as possible. We are learning to get in front of it and stay consistent with the calories to help her be more stable and happy.

Madison was at ABM with Judy this morning which went great! They focused on getting a feel for new ways she can sit with her ability to have smoother transitions on the ground. 


It was then time to head home to rest and have some lunch. Madison has been napping lately which has helped with her energy levels.

After her lunch she headed to Grandview for some Physio with Kate. Today they focused on strengthening exercises recommended by St Louis and transitions from standing to squating to sitting. 


Madi then headed to Sun Valley as an Ambassador of Variety Village to be a part of a cheque presentation from a recent golf tournament benefiting Variety Village. She was happy to be paid in smarties and gifts from Nina for her appearance hahaha.


Madi, Mommy & Nana then had a nice dinner together and then played with her new bubble Barbie!




Before the day was at its end, Madi went for a swim with Ryan and Jess. Madi did her first assisted front float with face in the water! Mommy was so happy to hear that! They also built her water toys a home to hang out in while she had her lesson. 

Day 860: Childhood Nephrotic Syndrome

For the past few months you may have noticed various posts where Madison has been swollen, not feeling well and very tired. As parents we are always looking for answers and better ways our children can be taken care of with their health. For Madison her major focus since birth has been managing her CP diagnosis. 

We now have another diagnosis we will be focusing on in the short term, and hopefully is not something else she will have to manage for life. We are releived to finally have answers, but hearing that your child has a kidney disease is never an easy pill to swallow. After several hospital visits in the last few days, every method of testing under the sun and visiting with a kidney specialist today, it was confirmed that Madison has Nephrotic Syndrome. She will be on a daily dose of prednisone for the next 3 months and then she will be re-assessed to see if she is doing well with that type of treatment or if she needs something different. We will be meeting with her specialist again next week and then the following week. She also has been prescribed water pills to manage swelling and is only allowed 600mls of fluid a day. 

She has been amazing through all of the doctors assessments and tests but is not in love with her meds- yuk! Gross! She says to it all. This syndrome is manageable by steroids and we hope to find other more natural ways of managing it through vitamins and a low sodium diet. 


She is a champ and started back at Physio today to get her legs moving which will also help with the swelling


Here is an excerpt from the Canadian Kidney Foundation which has more specific information:

Childhood Nephrotic Syndrome

Nephrotic syndrome is also called nephrosis. These two terms describe a disease in which the kidneys leak large and abnormal amounts of protein into the urine. When protein is lost in the urine, this leads to puffiness or swelling (edema), often of the eyelids, feet and ankles, and eventually the abdomen. If left untreated, this can lead to problems with breathing, eating and infections.

Nephrotic syndrome is diagnosed by recognizing three findings:
Swelling (edema)
High levels of protein in the urine (proteinuria), and

Low levels of protein (albumin) in the blood (hypoalbuminemia)

The onset or first “attack” of nephrotic syndrome can be a disturbing experience for parents and for the child. Because the swelling tends to develop slowly, it may not be recognized right away. By the time a diagnosis is made by a doctor, a child may be very swollen and may need to be hospitalized. Most children respond very well to treatment of nephrotic syndrome and, although most children have further attacks of the disease, the long-term prognosis for most children is very good.
Who is affected?

Childhood nephrotic syndrome can start at any age, but usually begins between the ages of two and five years. It is a rare condition that affects about 16 out of every 100,000 children at any given time, and it affects more boys than girls. It is extremely unlikely that other children in a family will also have nephrotic syndrome. While there are a few types of nephrotic syndrome which do run in families, these are very rare.

Causes of Childhood Nephrotic Syndrome
The exact cause of nephrotic syndrome is not known and it cannot be prevented. However, research into this condition is ongoing and researchers are trying to develop increasingly effective treatments. What we do know is that nephrotic syndrome is usually caused by an imbalance, from time to time, of the body’s immune system. This imbalance causes certain chemicals to disturb the filters of the kidneys. These filters begin to allow proteins to leak into the urine.

All the successful treatments for nephrotic syndrome work on the immune system in some way. Many, but not all, attacks of nephrotic syndrome are brought on by something that stimulates the immune system, such as a cold, flu or other infection.
Treatment for Childhood Nephrotic Syndrome
When a child is first diagnosed with nephrotic syndrome, the doctors will usually prescribe steroid drugs such as prednisone or prednisolone. The kinds of steroids used to treat nephrotic syndrome are not the same as the anabolic steroids that are sometimes abused by athletes.
Most children respond very well to steroid drug treatment. Usually, within one to two weeks the protein in the urine disappears and the swelling in the tissues goes away. This stage is called remission. A child that responds to steroids (steroid sensitive nephrotic syndrome) by going into remission is usually thought to have a clinical diagnosis of minimal change disease. Minimal change disease usually has a good prognosis.
There is a very small group of children who do not respond to steroid treatment (steroid resistant nephrotic syndrome), who continue to have lots of protein leaking into their urine, or who show serious adverse effects from prednisone. These children may require other treatments prescribed by their nephrologist.
Relapses and remissions

Most children will have at least one relapse or recurrence of protein in the urine. Each relapse will need a further course of steroid treatment. In general, steroid treatment for a relapse is for a shorter time than the initial treatment at the time of diagnosis of nephrotic syndrome. If a child has fairly frequent relapses then they might take a small dose of steroid medication on alternate days to prevent relapses. This is usually called maintenance treatment. However, as the child becomes older, the relapses usually happen less often.
It is not possible to accurately predict when the relapses will stop, but it is uncommon to have relapses after adolescence. It is also uncommon to have a relapse after the child has been free of protein in the urine (in remission) for five years.
It is important to remember that children with the usual type of nephrotic syndrome (minimal change disease) have no risk of kidney failure. Usually, as a child grows older, the nephrotic syndrome will become less troublesome. The great majority of children will eventually outgrow the problem and become teenagers and adults with normally functioning kidneys.

Day 858: Popsicles 

Today when Madi got up there was no change from how she had been feeling the last couple of days. She didn’t want to eat or drink, was super quiet and didn’t say much, cried cause her tummy hurt, wasn’t able to go to the washroom and fell back asleep after only being awake for an hour. Mommy had enough of waiting around for Madi to rebound this past week so Mommy took Madi to the hospital to get some answers. Triage took her in right away and after some blood work, urine samples and several physicals – they couldn’t figure it out and chalked it up to a virus that she would have to just ride out. The only thing she would eat for them was a popsicle. She slept the whole time at the hospital and slept the rest of the day at home. The doctor wants her back at the hospital Monday to see if she has improved. They were efficient and did a great job with her.


Around dinner time she woke up and seemed a bit more herself. She was chatty and had a little bit of dinner. She decided she wanted another Popsicle so her and Jack went outside to have one. After a few minutes she was ready to go back upstairs to bed. Hopefully she sleeps well tonight and rebounds tomorrow.


Day 857: Vibrafit

Madi had a good start to her day. Daddy took her to Variety Village to do some work with Stephanie. The big focus was walking! She walked up a ramp, did some standing with ski boots & Gaitors and walking with her ski boots! 


When Madi got home, Mommy set up her new Vibrafit vibration plate. It finally came (long story).

Many people with CP use vibration therapy to help improve things like circulation, bone density, muscle mass, balance and strength.

Here is a link for more information:

http://www.nature.com/articles/srep22518
Mommy let Madi and Jack simply explore it today so Madi would be comfortable and then Madi will be doing different positional work on it like holding 4 point, high knees and standing on it.


​​

Madison received priority mail today which she was excited to open. A beautiful letter was enclosed from Mario and the Romano family who supported Madison and many other families in Ontario who were in need of support for the same surgery Madison had. We are in the process of planning a dinner for all the families The Romano’s supported so everyone can meet and give thanks. This is a very special letter that we will keep for Madison to have when she is older when she can truly appreciate the meaning of everything.


As the day went on, Madison quickly went down hill. She is under the weather and went to bed early. She will have a low key weekend to hopefully recover for Monday.

Day 856: Slowing Down

From the moment Madi woke up this morning she was not herself. She was exhausted all day, quiet and didn’t want to eat much or do much of anything. Either she is hitting the wall from therapy overload or possibly getting sick. She is such a little warrior and always tries to move forward with things no matter what. Cancelling things today was not an option for her. She was looking forward to time with Jo-Anne and Ryan and nothing would stop her from doing that. 

Madi worked hard with Jo-Anne today. She proved to herself over and over how much strength she has developed. She had some tears that came from exhaustion, but pushed through and did some great standing, weight shifting with walking and even some step ups. 


After a sleep in the car on the way to Nana’s and lots of resting at Nana’s, Madi headed to Variety Village for a swim with Ryan and Ruby. She did lots of walking around the pool, some bobs and some activities to develop body awareness in the water.