CanadianCindyB

Making ANOTHER Leap: Decreasing Employment Hours to Increase Self-Employment

2018-01-07T20:53:00.000-05:00

I posted that in early 2016 I was reducing hours at my job in order to increase self-employment.

It's time to do that again. I've put in notice that I would like to decrease my hours from 20 hours/week to 14 hours a week at job 1. I've also stopped working at Job 2 during the months of March and April which means I'm working slightly less there as well on average. There have been hourly pay increases at both jobs over time as well.

My updated chart is below. For 2017 my self-employment was FORTY percent of my income.

I'm super excited about reducing my employment hours once again, and being able to have more time to do more self-employment of Personal Income Taxes and Payroll Services.

Primary job: (25 hours/week)

2012: 79% of income
2013: 75% of income
2014: 80% of income
2015: 70% of income
2016: 55% of income (decrease to 20 hours/week)
2017: 51% of income

Secondary job: (average of 5 hours/week)

2012: 12% of income
2013: 13% of income
2014: 10% of income
2015: 10% of income
2016: 10% of income
2017: 9% of income (decrease to 3.5 hours/week)

Self -Employment:

2012: 5% of income
2013: 11% of income
2014: 10% of income
2015: 20% of income
2016: 35% of income
2017: 40% of income

Other Income:

2012: 4% of income (Maternity Employment Insurance during January)

Making a Leap: Reducing Employment Hours to Increase Self-Employment

2015-10-02T07:01:00.000-04:00

Looking back to 2012, one of my goals was to increase my self-employment income to be more than 15% of my income for the year. Three years later, I've surpassed this goal! Although we aren't at the end of 2015 yet, I can estimate my numbers quite well. There is a possibility that my self-employment income will be more than I have forecasted.

Primary job: (25 hours/week)

2012: 79% of income
2013: 75% of income
2014: 80% of income
2015: 70% of income

Secondary job: (average of 5 hours/week)

2012: 12% of income
2013: 13% of income
2014: 10% of income
2015: 10% of income

Self -Employment:

2012: 5% of income
2013: 11% of income
2014: 10% of income
2015: 20% of income

Other Income:

2012: 4% of income (Maternity Employment Insurance during January)

WOOT!! This year my NET self-employment income will be 20% of my total income. I've grown business slowly, quite purposefully. I havn't advertised due to fear of growing too fast, and not having time to allocate to new clients. New clients currently come via word-of-mouth from current clients.

I've been hesitant to reduce my hours at my primary job up until now, because it pays well, has employer paid RRSP contributions, and paid sick time. It also includes FULL medical benefits while working Part Time. There are not many places where you can obtain medical benefits working part time!

I'm making a leap in 2016. I've already discussed with my manager permanently reducing my hours at my primary job, probably starting in February. I'm not reducing by much, but I will have an extra two days a month to have available for self-employment work, or a small amount of contract work elsewhere. Maybe I'll even start blogging more or pursuing more within the social media world. I will probably even advertise my services a bit this year. In case you are wondering, I do Income Tax Preparation and E-Filing, Payroll, and some Bookkeeping. I'm also open to new opportunities!

It's a big jump to do this, because reducing my hours means that I lose medical benefit coverage. I'm earning enough in self-employment to both purchase medical benefits for my family, (medical benefits are EXPENSIVE), and to cover the wages for the number of hours that I'm decreasing by.

I'm excited to make these changes, and to leap into them in the New Year.

Ready to jump! (Not really!) See my husband at the bottom? 1/2 way up Dorset Tower

2013 Contest Winnings Totals

2013-12-13T17:15:00.000-05:00

As a follow up to my post in July on my 2013 Contest Winnings at that point, I thought I should post the winnings for the rest of the year.

In July, I had won a total of $940 worth of prizes.

2013 Winnings (2nd Half of Year)

Google Nexus 7 Tablet x 2 (both my husband & I won one) Kitkat Contest Value $450
Google Play Codes from Kitkat Contest Value $30
$100 VISA Giftcard from Royal Bank Small Biz Twitter chat Value $100
$100 Giftcard to Glamagirls from Tweenhood Value $100
2 Books Muse & Secret Shared from @BookaliciousCA Value $30
$10 iTunes Giftcard from @PTPA Value $10

2nd Half of Year Total: $710

Total for 2013: $1650

Trip to Washington, DC - Tips from a Canadian

2013-11-16T18:56:00.001-05:00

Last week we travelled to the Washington DC area from Southern Ontario, Canada. We crossed the border in Buffalo, NY. Here are my tips and tricks:

1) Take the scenic highways. We took scenic highways on the way down, and some of the interstate highways on the way home. The scenic highways, particularly those in Pennsylvania were absolutely gorgeous. Travelling through the mountains is a must! However, I wouldn't advise this trip for winter, as the slopes on some of the roads were crazy steep, and very well could be treacherous for inexperienced drivers in the winter.

2) Stay outside of DC. Accomodation within DC is extremely expensive, and still not cheap on the outskirts. We stayed in Silver Springs one night, and in Bethesda for three nights. Both are on the metro (subway) line, which makes downtown DC easily accessible. We used Hotwire to book our hotels.

3) Take the Metro (Subway). Don't attempt driving to any of the tourist sites. Traffic is ridiculous. Take the metro instead! Buy a Metro card for $2.00, (the website says $5, but it changed to $2 in October) and put some money on it. If you don't buy a card, every time you use a paper pass it costs $1 more than the fare using the card. The subway system was easy to use, especially when using Google maps for directions. There are day passes available for the Metro, but unless you are travelling to many places in one day, I don't think it would be cheaper. They are $14.00/day. We did have someone pass us a couple day passes they were done with when we were putting money on our Metro card, and when we were done with them for the day, passed them on to someone else who was putting money on their card.

4) Smithsonian Museums. Go to a couple of the Smithsonian museums. Although accommodation is expensive as mentioned above, once you are there, being a tourist is inexpensive. All the Smithsonian museums/galleries/zoo are FREE admission.

5) Panera is better than Starbucks. If you are looking for a good coffee, a bite to eat, and free wifi, head to a Panera. It is a chain, that we do not have anywhere near us here in Canada. The food was delicious, and everyone goes to use their wifi. Nearly everyone had a laptop or tablet out while there. I had a bearclaw, which is apparently an American pastry that I was not aware of. I will buy one again!

We'll be heading back down next month for a couple days for a medical appointment, and I look forward to taking in a couple more Smithsonian museums, and having some delicious DC food. We've kept our Metro cards, so we're all set!

Participating in Research Study at NIH for Urea Cycle Disorders

2013-11-06T10:53:00.001-05:00

Note: i will add in some pictures later. My phone hasn't done a Google back up of the pictures I've taken yet.

Friday, November 8th would be our son Kyles second birthday. While being aggressively treated for Ornithine Transcarbamylase Deficiency (OTC Deficiency), a urea cycle disorder, with the hopes of having him obtaining a liver transplant, he acquired an E Coli infection at the hospital. The infection was not caught in time, and in doing the treatment for the OTC, dialysis was performed, which in turn spread the infection throughout the entire body.

Last year at this time, we had a follow up appointment at the
hospital. I'm hopeful that in my participating, new things will be learned that will help future generations.

This year, at this same time, I am at the National Institute of Health (NIH), in the United States, participating as a research subject in a study called MINI. It stands for Metabolism, Infection and Immunity in Inborn Errors of Metabolism. They had started the study with only urea cycle disorder patients, but have opened it up to all patients with inborn errors of metabolism.

Here is a link for more information on the study.
http://www.nucdf.org/research_UCD_MINI_Study.htm

We arrived on campus on Monday night. We were booked in to stay at Safra Family Lodge while here. It is directly across the road from the clinic hospital. It acts as a Ronald McDonald House for families of adult patients. It is a very beautiful building, with 34 bedrooms, large sitting areas, a grand piano in one of them, and a large communal kitchen for the families to use. There is another building next door to this one for families of child patients.

On Tuesday morning, we had breakfast at the house. They have free muffins, bagels, toast, fruit, tea, coffee and hot chocolate available, as well as a section that is "house" food available to anyone that is donated by people who are staying and have made to much, or packaged food from residents who are leaving. Residents are able to stay for up to a month.

We then walked across the road to the clinic. There is transportation provided for those who may not be able to walk over.

Admission took about 1/2 hour, and then we went up to the room I was assigned to. Met with the coordinator, went through medical history, had a quick physical exam, had bloodwork done, met the primary doctor in charge of the study. Had a quick lunch. Had a liver ultrasound, which I've never had done before. Apparently my liver looks fine. Then went to the physio/rehab dept where they had me do a number of exercises and strength tests. They only recently added this into the study, as they were finding that most of the subjects were very physically weak. They said I was only the 5th person in the study to do this portion. I had to run up and down 4 stairs (they have railings you can hold onto if needed), and they times it. They had me walk and run 10 meters and timed. Timed the length of time it takes to get from lying down to standing without using any aids like tables or chairs to hold onto. Timed on length of time to do a sit up. Interestingly, they were surprised I could do one at all because other subjects couldn't. And then they had a number of exercises/positions that they timed how long I could hold the position for. I could do them all, but could feel the muscles starting to shake by the end. Also did some balance tests (not so great at those! Once my eyes were closed I started to tip!) They started to do a number of strength tests, but the one piece of equipment had the battery die, and I was too strong for the tech. We are going to redo these strength tests tomorrow to get more accurate readings.

I then left and went back to Safra house with my husband Mike and daughter Natasha. We ordered in some pizza, and then I walked back across the road around 8pm. Interestingly, as I was walking, there were 6 deer that pranced across the road in front of me! Apparently there are about 35 deer that live on the NIH campus.

Slept for the night, fasting after midnight in order to prep for a 24 hour chamber study that measures exact metabolic rate. Most people opt out of this part of the study, but I think that this is one of the more interesting facets, and am interested in finding out the results. The chamber is sealed, and is basically a bedroom, with TV, computer, treadmill, chair, bed, and washroom facilities. There is a small window facing outside, and a window that faces the nursing desk. Food comes in through a window. They open on one side, seal their side, and then you can open your side to take out the food or vice versa.

Tomorrow I do a body composition in a bodpod machine, and a dexa scan to measure bone density. I will finish the strength testing, have more bloodwork, get a hepatitis A shot, and meet with the geneticist for final results. It looks like I will come back in a couple of months for a bit more testing, and I will have my family doctor give me the second hep A shot. I'm interested to see what the final results will say.

For now, I have 21 more hours in this room. :)

Education Options We've Been Offered (Gifted vs French Immersion)

2013-04-05T13:50:00.003-04:00

A couple of weeks ago, I received a phone call from the principal of another school in our area, wondering if our daughter might be interested in attending there next year. She met the criteria for the gifted program, and she has a choice of staying within her own school and having a slightly adapted program, or switching schools into the gifted program.

The fact that she met the criteria was not a surprise to us. Every teacher she has had over the years has commented that she probably fits into the "gifted" category. My husband was in gifted as a kid, and I was always one point away from meeting the criteria, but instead, I skipped two grades (grade 1 and grade 8).

The gifted program in our city is very small. It is currently one classroom of students ranging from grade 5 to grade 8. They are sometimes broken up into grade level (5/6 vs 7/8), and for that reason there are 1.5 teachers designated towards this class.

We went on a tour earlier this week, and I was blown away. It seems fabulous. Heck, *I* want to be in the class! The 5/6 portion of the class only has 6 children. One in grade 5 and the rest are in grade 6. They were working on a Carmen San Diego type exercise. (None of the kids know Carmen San Diego, but the teacher being about my age knew that I would understand the reference.)

With world maps, atlases, and Netbooks on hand, the kids were working in pairs to figure out where they were going. They had a list of about 15 countries, had to figure out where the countries were, then figure out what currency the country used, and then they had to convert a certain amount of the currency into Canadian dollars. The teacher was helping one of the kids in writing down the answers for his work.

The class has some kids who are strictly "gifted", and others who meet the dual diagnosis of gifted and learning disabled. You can be gifted in some areas, but learning disabled in others, which many people don't realize.

Our daughter joined one of the groups for about an hour working on this assignment. She loved the class, and has decided she would like to switch to this school.

The one downfall to switching is that she will have to leave the French Immersion system as this program is only offered in English. However, since my husband speaks French he can teach her. Busing is provided, which is great, because if it wasn't offered we wouldn't be able to realistically get her to and from this school.

She could start at anytime, but I think we've decided to have her finish her year out, and have her start in September.

National Infant and Pregnancy Loss Remembrance Day

2012-10-15T09:48:00.000-04:00

October 15th is National Pregnancy Loss and Remembrance Day.

We are coming up on October 24th, which is what would have/could have been the 1st birthday of our son Kyle. He died at Toronto Sick Kids last November from an E. Coli infection while waiting for a liver transplant, which was to be the treatment for a genetic metabolic disorder called Ornithine Transcarbamylase Deficiency aka OTC Deficiency.

It's an extremely difficult genetic situation to manage with drugs until the point of transplant. But the doctors were hopeful. They were willing to try everything possible for us. It was the very first time that Sick Kids was dealing with a case where it was known before birth that a liver transplant would be needed. In order to have him on the transplant list immediately after birth and to help search for a living liver donor, we found out his blood type before being born, through the extra sample of amniotic fluid during the pregnancy. There were high risk pregnancy specialists to look after my health to keep my ammonia levels low during the pregnancy and birth, genetic teams from four different hospitals, and transplant teams from two hospitals. It had also been arranged for us to fly with him to Yale university hospital for an experimental hepatocyte transplant of liver cells, and to be flown back to Toronto if a liver were to come available while we were there.

Toronto General had more people apply to be a living liver donor than they had ever had apply for a child before. Apparently many children have no applicants at all, and their only chance is with a cadaver liver. At the last moment, only a few days before I delivered, they even decided they would be willing to try a transplant with the wrong blood type if one came available because of the severity of the situation. Again, this was something that had never been done with a child at Sick Kids, only with adults. Pretty amazing preparation work behind the scenes with all the teams co-ordinating together.

I'm still dealing with this death a year later. I'm angry. I didn't expect to still be angry after a year, but I am. I'd like to be rid of the anger. Unlike the doctors, we didn't actually expect our son to come home because we understood how hard it is to treat OTC. But in all the potential situations in my mind, one that didn't enter was that of an E. Coli infection! E. Coli? Really? Found in the picc line, it most likely got there from one of the many many staff not washing their hands properly. There were dozens of staff handling him each day... Its impossible to say which person caused it. The almost impossible to treat genetic condition was actually being managed successfully. Without the infection, he would have made it through to being transplanted. Long sigh. The infection was found on day 8. It became septic and caused brain stem damage. Test results on day 14 showed the infection had caused damage to the part of the brain that tells your body how to move. It had also resulted in no response to sound or visual stimuli. His last natural movement was on day 13. His brain had actually atrophied (got smaller) from one week before. All from the E. Coli infection, and not the genetic condition.

The treatment options they were using last year were very new, and as I already stated, we were extremely appreciative for the great attempts at treatment that were made. We know the treatment methods are new, because in 2003, our first son Colin was born with the same condition. So, yes, you read correctly, this was the second time we went through a neonatal death. Transplant was not a treatment option for infants then. We went through that pregnancy learning he was affected at around 20 weeks knowing there was no treatment. We did "care by parent" at the hospital, and he was held the entire time he lived. He was a typical newborn until the 40 hour mark, at which point his system started shutting down from poisoning. We had been told to expect him to go into a coma, which he never did. His systems just gradually shut down, and he died at 52 hours old, on his third day of life.

After this first death, I had a miscarriage the next year at 9 weeks. Physically more painful than any of my labors, and difficult in and of itself, it also brought up all the emotions of Colins death. Our daughter was about four at the time, and I remember her crying harder than I've ever seen her cry before when I came home from the hospital and said the baby had already died inside of me.

Between the death and the miscarriage it took many years before I was ready to try again. Which unfortunately didn't work due to the stupid E. Coli infection.

Takeaways

People. The positive. People are amazing. The amount of support we had from others was unbelievable. When I miscarried, people phoned and said "I had a miscarriage too. I'm so sorry."

The number of people who applied to be an organ donor for Kyle made us extremely humbled. Many others who couldn't apply because they didn't match the strict criteria (which included being under 150 pounds) signed up for the organ registry.

People came to visit us at the hospital in Toronto, sent cards, brought food and gift baskets, cleaned our house, mowed our lawn, raked our leaves, gave us money, looked after our daughter, bought thoughful gifts for our daughter, and sent us on a needed and delightful family outing to a musical in Toronto after the fact.

Many new friends were made. Acquaintances became friends. Both in real life and online.

People. The negative. As much as people have supported us, there are now groups of people I'm not very comfortable being around. I can't be around people who talk about how difficult being a new parent is. Or around those who don't treat their children well. I skip social events like baby showers unless they are family or already a really good friend.

So many people around us have watched us go through all of this. They remember each instance with "I was pregnant with X at the same time." They have trouble being around us. I completely understand because I would probably be the same way if the situation was vice versa.

Medical Recognition. Due to the huge amount of background work for us last year, there are many more medical professionals who are now aware of this extremely rare disorder. There have been two other baby boys born in Canada over the last year and a half with this disorder, and although their mutations were less severe than ours to begin with, both have survived. The hepatocyte cell transplant that they were going to send us to the States for, is now offered in Canada as well due to our expression of concern as to how difficult going to another country would be for us as a family and that we would have no social support being so far away.

If You Want to Offer Support. If you know someone going through a loss and you can think of something to do for them, just do it. People would ask all the time what they could do. To be honest, we were so overwhelmed I had no idea. I also didn't like asking for anything, even if it was needed. We were told by our pastor and social worker to learn to just say yes. So whenever someone had a concrete offer of something "Can I bring you a meal? Can I come visit you? Can I rake your leaves?" I said yes. It was the best advice we could have been given. Saying yes was hard for me, but it made our lives easier, and provided a way for people to help when they felt our helplessness. We were overwhelmingly humbled by the love around us. So my advice, is to think of something concrete to do for your family/friends and just do it.

Final note: OTC is one of 6 different Urea Cycle Disorders. I am a carrier. If I get pregnant again, with each pregnancy there is a 1 in 4 chance that the baby will be an affected male, and with the specific mutation that we have, means that without treatment the baby will die at 3 days old from ammonia poisoning. There is another 1 in 4 chance that the baby will be a female carrier.

1 in 100 Canadian Births Conceived With IVF

2012-01-11T17:07:00.001-05:00

This past Saturday, the Globe and Mail newspaper had an article regarding PGD - pre implantation genetic diagnosis. I plan on writing more about that topic in the future, but in the meantime, one of the statistics that was in the article was that approximately 1% of the live births in Canada were conceived via IVF - in vitro fertilization.

The 1% quote is pretty close. In 2009, there were 380 863 births in Canada, and 3160 of these were via IVF based on the statistics stated below. This is an overall rate of 0.83% of births were via IVF, which can easily be rounded up to state approximately 1%.

I know a number of people who have used IVF in order to get pregnant, but I had never considered the overall percentage before. I'd share one of cute pictures of friends children who have been conceived by IVF, but even for those who are open about the conception, it feels a little too public to request permission to use a picture.

One in one hundred children being born are being conceived by IVF. This means that you probably know a child who was conceived in this way, but you probably just don't realize it, since infertility, like miscarriage, is considered a private issue by many Canadians. Both are starting to be talked about a little more.

I looked up some statistics on IVF in Canada. According to the news release from the Canadian Fertility and Andrology Society (CFAS), the following are statistics that have been compiled from all 28 fertility clinics across Canada.

"Live birth rates were reported for a combined total of 10,532 IVF treatment cycles (including intracytoplasmic sperm injection [ICSI]) undertaken in all 28 IVF centres in Canada in 2009. There were 3332 IVF/ICSI treatment cycles performed in 8 centres in Western Canada, 5015 cycles in 14 centres in Ontario, 1875 cycles in 5 centres in Quebec, and 310 cycles in 2 centres in Atlantic Canada.

The overall live birth rate was 30% per cycle started, 33% per egg retrieval procedure, and 35% per embryo transfer procedure.

71% of births were singletons, 28% were twins, and 1% were triplets or more.

A healthy term singleton birth occurred following 16% of cycles started, 18% of cycles having egg retrieval, and 19% of cycles having embryo transfer.

The live birth rates per cycle started, by age of the mother, were:

40% for women under 35 years old

29% for women aged 35-39 years

12% for women 40 years old and over.

The chances of a healthy term singleton baby per cycle started, by age of the mother, were:

21% for women under 35 years old

16% for women aged 35-39 years

7% for women 40 years old and over.

The proportion of babies with congenital anomalies was not different from that in the population of women conceiving naturally.

The miscarriage rate of 17% per clinical intrauterine pregnancy is in keeping with that for natural conceptions.

Preliminary results were reported for a combined total of 11,718 IVF/ICSI treatment cycles undertaken in all 28 IVF centres in Canada in 2010:

The overall clinical pregnancy rate was 34% per cycle started, 37% per egg retrieval procedure, and 39% per embryo transfer procedure .

75% of pregnancies were singletons, 23% were twins, and 2% were triplets or more.

A singleton pregnancy occurred following 23% of cycles started, 25% of cycles having egg retrieval, and 27% of cycles having embryo transfer.

The clinical pregnancy rates per cycle started, by age of the mother, were:

43% for women under 35 years old

34% for women aged 35-39 years

18% for women 40 years old and over.

The singleton pregnancy rates per cycle started, by age of the mother, were:

30% for women under 35 years old

23% for women aged 35-39 years

12% for women 40 years old and over.

Complications occurred in fewer than 2% of treatment cycles.

Live birth rates for assisted human reproduction cycles started in 2010 will be released when they become available.
The CFAS makes these data available for reference and education."

I'm sure these numbers would be even higher if it wasn't for the cost and accessibility. The cost is much too high for many people to even be able to consider the option of IVF. At thousands of dollars per IVF attempt, the costs are prohibitive to many. Secondly, accessibility is a concern for those who do not live in urban areas where there is a fertility centre.

For people who live where I do, it requires a daily 1.5 to 2.5 hour commute each way to a clinic for numerous days during a cycle. How do you balance travelling that long for appointments while also maintaining a job?

Community of Love

2011-12-14T16:07:00.000-05:00

We have been very open and public about our journey through our pregnancy with our son Kyle (Oct 24 - Nov 8, 2011). His life has not only affected us as a family, but our extended family, friends, acquaintances, doctors, hospital staff, and many people who I have never even met.

Not only did it affect these people, but his life created a lot of conversation right from the very beginning. Some people didn't understand why I didn't abort immediately after finding out he was affected. Others were incredibly hopeful for the medical treatment of a liver transplant that was available this time, that wasn't a possibility eight years ago when we went through this before. After his death, many have struggled with the "How could this happen," either from a medical or theological perspective, or both. Awareness about urea cycle disorders and awareness about organ donation have occurred. A new study on hepatocyte transplant (injection of healthy liver cells) will be taking place for children with urea cycle disorders in Toronto because of the behind the scenes research that the metabolic genetics department did because of information I had them look into while looking into treatment options for us.

We have been overwhelmed by the generosity of others. From the many people who looked into the possibility of being a donor, those who spent hours in prayer, those who helped financially, those who brought us flowers and meals and gift cards for meals both during our time at Sick Kids as well as in the weeks we've been home. For those who have visited and listened and laughed and cried with us. For the heartfelt letters, that I will go back to read. One family even provided us tickets to go see Mary Poppins the musical in Toronto as a way to reconnect as a family, which is something I would never have thought of, but was highly valued and appreciated by us. People often ask what they can do for us, and I never have an answer. Sometimes you don't even realize what it is you need. A reconnection experience to adjust into our "new normal" was one of those things.

I'm not very good at accepting things from people, but I was told by many (my husband, social worker, pastor, etc.) that if someone offers something, I need to say yes, because 1) I need to and deserve to (I still have issues with the "deserve to". I don't think I do, but I digress...) and 2) Because individually and as a community, people want and have the need or desire to help, and they can't help with allowing us to still have our son, so they help in whatever way they feel they can. So when offered, I say yes, and we have been blessed and overcome by the generosity of others.

I have noticed a few blog posts about Kyle's life in the last few weeks. I thought I would share them here.

http://www.transplantedthoughts.com/?p=2309

http://myunstilllife.blogspot.com/2011/11/with-love-in-my-heart.html

http://www.theanthonycrew.com/2011/11/power-of-prayer.html

http://jamsideup.ca/blog/?p=1397

I was also interviewed during my pregnancy by Camilla Cornell, who wrote an article entitled "Gene Genie" in the 2011/2012 Winter Edition of the Pregnancy Special of Today's Parent Magazine. I can't find an online link at this point, but I'll put it in if I find one. Look for this magazine at your doctors office. They are distributed free of charge.

It is now 7 weeks since I gave birth to Kyle, and 5 since he died. I went back to work after our son Colin 6 weeks after giving birth and his death (he lived for 3 days) and it was much too soon on an emotional level. I will return to work this time at the beginning of February, 15 weeks after giving birth, 13 weeks after his death. It's amazing how much time is needed to process death. I'm not sure that it ever fully gets processed.

The Last Few Days Nov 6-8 and Beyond

2011-12-14T00:57:00.000-05:00

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011. We had 15 days with him. This is a summary of the last few days.

If you havn't read my recap of Week One, or the recap of Week Two, read them first.

We spent the day at Sick Kids on Sunday, including our daughter. The nurse that day was the same nurse who was there the very first day Kyle was born and brought over from Mount Sinai. She arranged to have Natasha be able to be let in to see Kyle since she wasn't officially allowed to on the PICU floor since she was under 12. I'm very thankful she did this.

This was the last day that he was responsive at all...he would still grip your finger if you put it into his hand.

They did neurological tests on Monday and Tuesday. MRI, ECG, and a special type of ECG where they put goggles on and flash lights, do hearing testing as well as physical testing and all of them showed absolutely no response to stimuli of any form. We made the decision to let him go, and spent time with him as a family for a while before releasing him from the meds and breathing tube. He was 15 days old.

It probably sounds strange, but the fact that the tests showed complete instead of partial damage made it easier to let him go, since we didn't have to make a choice in any form, the choice was already made for us.

It is extremely frustrating to us and to the doctors that they were able to get the metabolic condition under control only to have the E. Coli infection take over to such a terrible extent.

We came home late Tuesday night (Nov 8), and made visitation/cermony arrangements today for Saturday evening. We then travelled north to Sudbury to have him buried next to his brother Colin who died from the metabolic genetic condition at 3 days old 8 years ago. It is also the same graveyard where my two brothers who also died from OTC, the same genetic disorder, were buried.

We are exhausted, and sad, but overwhelmed by the tremendous amount of support we have received from all around us. It's hard for people to hear that a baby has died...especially when this is the second time we have gone through it. I don't know why us, but despite the grief and loss and pain and exhaustion, we are feeling overall ok right now, mostly because of how much support we have had.

The doctors commented how impressed they were with our advocacy for Kyle right from the beginning during the pregnancy. Because of some of the information I had gathered and presented regarding emerging research for the condition at the beginning of this process, Sick Kids will be starting a new experimental treatment study to help babies with the same type of condition as well as other urea cycle disorders in the future. Kyle was not physically big enough for this treatment study, but I am proud that because of him it will be started at Sick Kids to help others if needed.

The study is experimental, and a little controversial, but we were willing to participate if we didn't have a liver donor or cadaver liver lined up fairly quickly due to the severity of the illness in our particular mutation of OTC. It had been arranged for us to be flown to Yale to be in the study if needed. One of our big concerns was travelling to the States. As we had said to our doctors in Toronto, "Being in Toronto is hard enough, but at least our family and friends can come visit. To go to the States means noone will be able to visit (due to finances), and we aren't familiar with the doctors down there."

In case you are interested in this study, here is a link, and if you want other information, let me know, as I do have other links I could share as well.

http://www.newswire.ca/en/story/861109/cytonet-s-liver-cell-therapy-trial-for-children-with-ucd-expands-to-canada

We were also told that Toronto General was overwhelmed with the number of applications they had for living donor for liver. I know of six who applied, and another six who we told to told off because they only test one person at a time and they were still going through the applications they had. Hopefully this has raised awareness of the need for organ donations and will help other families waiting.

There is so much more to write, but I have difficulty putting my feelings into words in general, and particularly in this situation.

Week Two at Toronto Sick Kids recap of Oct 31-Nov 6

2011-11-28T17:03:00.000-05:00

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011. We had 15 days with him. This is a summary of week 2.

If you havn't read my recap of Week One, read it first.

Mike and our daughter left on Sunday night to go home, while I stayed in Toronto. I already had a hotel room booked at the Delta Chelsea for this week, since originally I was supposed to have baby on Nov 1st by planned induction and I had booked it as a place for Mike to be able to sleep for the first couple days before I would be discharged, and then for me to join him. The hospital and the hotel are only a block apart from each other which is really helpful.

The weekend had been hard, as I described in the previous post, with dialysis lines inserted, dialysis started and stopped, and ammonia levels spiking high. They had also attached Kyle up to a fancy EEG machine over the Sunday and Monday for 48 hours to monitor for the potential of both convulsive and non-convulsive seizure activity from the high ammonia levels that had occurred on Saturday. Apparently Sick Kids is the only hospital in Canada to have this machine - it has many more electrical leads on it than a typical EEG machine.

Monday was Halloween. Mike wrote his status on G+ and Facebook that day:

First day back home for the day ... its a bit of a blur. Feels like yesterday I left with +Cindy Babcock, but its been a week. While I was there it felt like forever, like months were passing, watching him get hooked up to so much equipment and have so many people figure out how to best care for him. Its surreal now that I'm not there, trying to imagine now what I know I experienced all week.

Cindy's still at Sick Kids with Kyle trying to be strong, Natasha's here with me excited about Halloween tonight. Its two different worlds, and yet they're both happening right now.

I met with many doctors and support staff that day. If I was in the room, there was someone there waiting to talk to me. If I left to drink or eat, I came back to messages that people had come in looking for me. I spent so many hours talking to staff that day, that I had to sit and start writing stuff down. I'm usually quite good at remembering things, but it was overwhelming.

I'd also forgotten it was Halloween, and after talking with the lactation consultant who had what looked to be a police or army uniform on, I confusedly asked her if she was part of the Salvation Army? That was the only thing I could think of as to why she would have this odd uniform on! Nope, just Halloween!

A week of general antibiotics had just ended, which had been given as a precautionary measure against potential infection because he was so little, but that day they found E.Coli in a urine sample. A kidney was enlarged as well, they suspected the E.Coli infection caused the enlargement. New antibiotics to treat the E.Coli infection were started. None of us realized at the time how bad this infection would turn out to be.

Ammonia levels were creeping back up, and the metabolics genetics team were concerned about the levels creeping back up and the potential cyclical cycle of needing dialysis. They ordered a special TPN mixture (Total Parenteral Nutrition) in from the States that contained only essential amino acids and no non-essential amino acids, because the TPN mixture he was on was not being tolerated by his system well since it had too much protein in it with the non-essential amino acids in the mixture. The special TPN mixture had to be approved by Health Canada, and once approved would be MADE in the States the next day.

Feeding had not been going great the previous week, which they put down as being because he was still slightly preemie with digestive tract not completely/fully developed yet. They were feeding Kyle a "whopping" 2ml/hour of low protein formula, but he wasn't digesting it well, because of being small. They were starting him on domperidone to help with digestion. The rest of his food was coming from the TPN mixture, along with IV drips of glucose and lipids (fats). On the Monday, Oct 31st, they brought his formula feeding down to 1ml/hr through the NG tube.

The doctors did an ultrasound of the brain and could see swelling, and ordered an MRI for the next day to see more detail.

On Tuesday, on top of the E.Coli being found in the urine, they found an infection/growth that had started in the PICC line. Ugh.

Neurology came back with results from the 48 hour EEG monitoring from the weekend, but no seizures were found on it. This was really good news in my opinion, since it meant the high ammonia hadn't caused any neurological damage. In retrospect, if only that was all we had to worry about. In reality, the E.Coli infection had already started to cause damage on it's own...and it affected a different portion of the brain causing more damage than the ammonia would have.

Ammonia levels had continued to go up over night and through the day on Tuesday. Dialysis was started again. It did bring the levels down quickly, but the machine clotted, and they had to stop the dialysis after a few hours.

The MRI didn't end up happening on Tues, there was a backup of people waiting to use it, so it was booked and done on Wednesday.

On Wednesday afternoon, they asked if Mike could come come back to the hospital so that the doctors could meet with both of us together later that evening. Never a good sign. Mike left work early, dropped Natasha off a relatives along the way, and made it down for our meeting. Thank goodness I had one of my friends with me that day visiting. I was a mess.

Once Mike arrived we met with the metabolic and PICU doctors. The doctors were highly concerned because of the infection. It had developed into full septic shock, and Kyle was already on the highest dosages of blood pressure medication they could give him. They didn't know if the infection had already hit it's peak or not. If it hadn't and if it was going to get worse, they feared there was nothing else they could do, because they couldn't give any more medication for blood pressure. Their fear was that if the infection had not reached it's peak, and the blood pressure got worse there would be nothing they could do because they couldn't increase the blood pressure medication.

They were also concerned about the swelling in the brain that they could see from the MRI. They knew based on where the swelling was (base of brain stem and basal ganglia) that it was caused by the infection and not from high ammonia. They were hopeful that the swelling would reduce, but it would have to be a wait and see situation.

We were told that treatment for the E.Coli infection/septic shock was a three week treatment of heavy duty antibiotics. I remember gasping when I heard three weeks...that is what cemented how serious everything was to me, since I've never heard of antibiotics being used for that long at once.

Kyle was taken off the transplant list on the Wednesday night because of the infection. I had assumed that this meant he would be off the list for the full three weeks while treating the infection, but I learned later that as long as the infection was shown to not be getting worse he could be put back on the list.

On Thursday, the special TPN mixture that had been specially made in the States on Tuesday arrived. It had got held up at the border on the Wednesday and it took some behind the scenes work by the metabolic doctors to get it through customs. Amazingly, this mixture did the trick, and ammonia levels kept low once this mixture started to be used. The infection seemed to have leveled off and not got any worse, and over the next few days they were able to reduce the blood pressure medication until he was taken off all blood pressure meds.

He was considered stable over this time, and blood work showed that the infection was starting to clear up based on blood cell counts. Although he wasn't getting worse, he wasn't getting any better either. He hadn't been awake or been able to open his eyes since the dialysis tubes went in on Saturday. He was responding a little bit, but not a lot, to touch, and was only moving his arms and legs on rare occasion. What we didn't realize is that normally babies start trying to take the breathing tube out after a couple days, and he hadn't tried to. The doctors were really hoping that he would start responding more, and ideally, try to take the tube out to show that he was responsive.

On Friday, transplant had him weighed. He weighed in at a whopping 9 lbs (from birth weight 12 days before of 5lbs 5oz), because he was SO swollen up with all the fluids/IV's they were giving him. Transplant includes this swollen fluid/extra weight as normal weight. Transplant co-ordinator told us that since the infection was decreasing, he could be put back on the transplant list as soon as it was approved by the transplant surgeons. Transplant surgeons decided they needed to wait until he showed signs of more responsiveness before putting him back on the list, since they were worried about potential neurological damage.


Saturday. Swollen from all the fluids.

On Saturday, we realized why they had weighed him. We havn't been told this officially, (and due to privacy reasons I'm sure we won't be told), but we're pretty sure it's because they knew a liver was coming available and wanted to see if Kyle was big enough as well as healthy enough to be put back on the list for this possibility. On Saturday, in the late afternoon they brought in a young baby, maybe only a couple months older than Kyle, who had just had a liver transplant into the bed space across from us in the PICU room Kyle was in. We're not supposed to know medical conditions of the other children in the room, but, a) the surgeon's name was listed as his doctor on the wall outside the room and it's the same doctor we had been dealing with, and b) I overheard one of the nurses telling one of the other staff that he had just had liver transplant. I'm pretty sure in retrospect that had the infection not set in, causing the permanent damage it already had, that Kyle would have been transplanted that day.

A close up picture from Saturday.

By Saturday night I was getting quite concerned. That he hadn't opened his eyes in a week, and wasn't responding enough. Seeing the other baby come in and realizing he had been transplanted, and that he was alert and moving around even right after surgery, was more than hard. That night I took a look at a blog that I had bookmarked (there's a link on the side of this blog for it) of a family in the States who had a boy earlier in the year with a severe mutation of OTC, who had since been transplanted to see where they were at in the same time period. The pictures showed the baby awake, alert, and with no breathing tube, and this was after having had a severe hyperammonemic episode in his first couple days. At this point, I knew we were in trouble, but tried to remain hopeful.

The next post will be about the final couple days and beyond.

Week One at Toronto Sick Kids. A recap of Oct 24-30th.

2011-11-18T12:11:00.001-05:00

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011. We had 15 days with him. This is a summary of the first 7 days.

As many people reading this know, I was pregnant with a baby boy affected with a severe mutation of Ornithine Transcarbamylase Deficiency, which means that he can't metabolize protein properly. Protein gets changed into ammonia, but it doesn't get past that point in affected children. The ammonia builds up, causing potential brain damage, and eventually causing the organs to shut down. We were going to do medical treatment to be followed by a liver transplant. We weren't convinced we would get to the point of transplant, because the treatment would be difficult to manage. But we were willing to try. We were doing it day by day. We were going to try, and if he made it, we would go buy everything that was needed.

I was due Nov 14, or Nov 11 based on ultrasound. I've had two previous full term pregnancies. My daughter was born at 10 days overdue. Our first son, who died at 3 days old due to this same genetic disorder, was born exactly on due date. Back then, in 2003, there was no real treatment option available to us, so we did care by parent after he was born. With this history of when I went into labour with previous pregnancies, we booked a planned induction at 38 weeks, 2 weeks before due date, so that the doctors would be ready for us and ready to treat the baby immediately. I was planning on going to live in Toronto starting one week before as a just in case... The doctors wanted me to be in the downtown core of Toronto (over two hours from where we live) as a precautionary measure in case I went into labour early.

Things don't always work out as planned.

My Facebook Status on Saturday Oct 22: "I will be moving to TO on monday. If you don't have my text # let me know and I'll send it to you. My phone also has facebook, so you can still find me here too."

I had been planning on taking the evening Greyhound bus to Toronto on Monday Oct 24th and stay at my cousins for the week, but it didn't work out that way. Instead, that morning I woke up to the very slightest bit of blood upon wiping after using the washroom. I woke up my husband and told him we should probably go into the hospital as a just in case, since I've never had any bleeding in my pregnancies, and I was pretty sure I had "dropped" about a week and a half before.

That was 7am, got in the car at 7:30am, and my water broke in the car at 8am! Contractions started about an hour later, and we arrived in Toronto around 10am. We phoned the hospital on our way after my water broke, because there were special medicines that were to be used during my labour in order to help both the baby and I due to the genetic condition. They can't be mixed more than a couple days in advance, so they had been planning on having the pharmacy mix them the day before the planned induction. I'm not going to go into it at this point since it probably deserves a whole post unto itself, but after delivery, I went into a wee little episode of medical delirium, where I lost 8 hours of memory and went a little crazy, due to extremely low potassium levels -a side effect of one of the medicines I was given. We'll talk about that another time. I'm not saying that I kicked doctors out of the room, or tore all my IV's out or anything like that of course. (Did I mention I went a little crazy? And remember none of it?)

Here is a picture of me at the hospital before they had a room ready for me.

Kyle was born at 1pm, at exactly 37 weeks going by last period date. I was really sick this pregnancy, and had a hard time gaining weight...I gained 4 lbs, and he weighed 5lbs, 5oz. I got the natural labour I wanted instead of the induction, and without the planned PICC line insertion for me that I had been worried about having. Up until a few days ago, I was still bruised from all the bloodwork that had to be taken, which is what they were trying to avoid by having a planned PICC line put in. Considering that I tore out my IV lines, it's probably a good thing I didn't have the PICC line in.

My FB status 4:45am Tuesday morning Oct 25: So much for moving to TO a week ahead of time. Was planning on arriving in TO Monday evening, but went into natural labor monday morning! Baby Kyle Alexander Babcock arrived at 1 pm weighing 5 lbs, 5oz, or 2.405kg for the metric people. :) He is across the road at sick kids stable in picu now.

Kyle and I right after delivery.

Kyle was taken to across the road to Toronto Sick Kids immediately on Monday afternoon. He was started on treatment for the metabolic condition, and was on the liver transplant list by Tuesday evening. He had a PICC line inserted on the Thursday Oct 27th due to all the blood work they were taking from him to monitor ammonia levels, etc.

The hospital treated him as a preemie, because of his size, and because the doctors said he was actually more like 36 weeks instead of 37 weeks based on a number of factors including size and digestion. They put him on antibiotics immediately as a preemptive measure since small, preemie babies don't fight infection well.

Kyle Day 1 after hooked up to medicine through IV's.

On Friday Oct 28th, ammonia levels started to rise gradually. The plan was that if levels went above 200, dialysis lines would be inserted and dialysis started. By Saturday morning they had drifted into the high 200's. High levels of ammonia can lead to brain damage, so the plan was to ensure the levels were kept relatively low. Kyle went into surgery to have the dialysis lines inserted. The surgery went well, but he lost a lot of fluid/blood during the surgery, and looked really tiny after it was done. It then takes a while to get the dialysis set up and primed, and during this time his ammonia levels spiked really high, really quickly...to 600 and then to 900. The spike in levels was unexpected. They were able to bring the levels back down with the dialysis, but in the meantime the room was crazy busy due to the spike in levels and the doctors trying to figure everything out. We had gone in, watched for a few minutes, realized it was too busy, and went and waited in the waiting room. The metabolic specialist said there were 25 staff in the room at one point between pediatrics, metabolics, dialysis, neurology, dietitians, respiratory therapists and more. They had put a breathing tube in before doing the surgery, which was to stay in for at least a few days after.

This picture is from the Saturday. PICC line in, dialysis lines in, breathing tube in, NG tube in, and IV's going in in many places. It gives an illustration of how much medicine and equipment he was on at the time.

With the breathing tube in, he got bumped up a level on the transplant list from category 3 (in hospital) to category 4 (in hospital in ICU on life support systems). The only category higher is 4F (in hospital in ICU on life support systems with fulminant sudden, full blown liver failure).

The plan had been to keep him on dialysis for a few days, and they would be able to adjust nutritional requirements during that time with the amount of protein they fed him, by combination of TPN (Total Parenteral Nutrition) and a low protein formula called Cyclinex via NG tube. Nope. Plans don't work. Although the dialysis worked in bringing the ammonia down quickly, it was hard on his body, and by Sunday morning they took him off the dialysis because it caused his blood pressure to change too much. (High/low? I can't remember!)

Over Sunday night and Monday he was considered stable again, although ammonia numbers were starting to rise again.

Our daughter went back home after the birth and my mother in law came and looked after her for the week. She came back down on the weekend, but in PICU siblings aren't officially allowed in unless they are over 12 (she's almost 10), because they can carry germs without being sick, and they don't want them transmitted in ICU, so it was hard.

Being on the PICU or NICU floor is draining. You can't have food or drinks with you in the room, so I would have to force myself out to go eat/drink. I knew I needed to in order to maintain my own energy, but also because if I got sick, I wouldn't be allowed on the floor or in the room with Kyle. It's a shared room with 3 other children (there are no semi private rooms in ICU at this hospital), and if the doctors were doing rounds, you could stay in the room while they were discussing your child, but had to leave while they were discussing other children. If they were doing a sterile procedure on someone you had to leave. And during shift change between approximately 7 and 8 both am and pm, you couldn't go in either. Add in time away for pumping breastmilk...the lactation consultant recommended pumping for 20 minutes if you were double pumping (both breasts at the same time) or 40 minutes for single pumping, every 3 hours. I pumped, in the hopes that the milk could be used after liver transplant, or to supplement the low protein formula, but nowhere near that amount. It simply wasn't realistic in the situation. You can also only have a total of two people in the room at a time, so if family came to visit, Mike or I would have to bring people in one at a time to see him.

When you were in the room, much of the time was spent talking to the doctors and other staff. Pediatrics, Metabolic Genetics, Transplant...each of which had the doctor on call, specialists, fellows, residents, etc, as well as supporting staff such as dietitians, respiratory therapists, transplant co-ordinators, social workers, lactation consultants, chaplains, plus your nurse for the shift. Every staff member we met, from housekeeping to cafeteria workers to doctors and nurses were phenomenal to deal with.

During Sunday and Monday Kyle was considered stable, but the ammonia levels did start to creep back up.

This is the end of the recap of week one. I think this post is long enough, and I will post week 2 as a separate post, hopefully by later this week.

Liver Transplant Donor Application Update

2011-10-21T21:26:00.000-04:00

I have some important news to share. All blood types can now apply to be a living liver donor towards our baby. Previously only B or O could apply, and they are now opening it up to A and AB donors. Positive/negative blood type does not matter. This is called "ABO incompatible matching", and is not typically done. Toronto has done it with adults, but never with children.

When we met with the transplant team a couple of weeks ago, they had mentioned that they were going to add in the possibility of using ABO incompatible livers from cadavers if they came in to bring up the odds of finding a liver. This is only done in rare cases. Our next question to them automatically became, "If you are willing to do that, what about incompatible blood type living donors?" They mentioned that they had not done this at Sick Kids before, but would talk it over with the living donor co-ordinators at Toronto General as well as the main surgeon (who was in surgery during our last meeting.)

I received an email today saying that it had been approved, and if we knew of anyone with the other blood types who would be interested in applying that they could. Healthy, ages 18-60, in normal weight range.

This is a link to the Liver Donation Manual. There are a few things in it that don't apply to our situation - like the fact that normally they don't look at potential donors until the person is on the transplant list. Since baby will be on the list immediately after birth, they are looking at the possibilities of screening donors now. It's a very detailed document about the procedure!

Finally, here is a link to the Donor Health History Application Form. Where it asks for the recipients name, we are using "Baby Boy Babcock" for now, and he will be at Sick Kids. If you need any more info let me know, and I'll give you the number for the living donor transplant co-ordinator at Toronto General Hospital who looks after all this, and answers questions for those considering the process.

Applications get sent to:

Toronto General Hospital
Living Donor Assessment Office
585 University Avenue
NCSB-12C 1217
Toronto, ON M5G 2N2
Fax 416-340-3097

Random Liver Transplant Facts

2011-10-06T12:45:00.001-04:00

Some random facts about liver transplant:

There are typically between 20 and 30 children on the waiting list for a liver at a time just at Toronto Sick Kids hospital. Toronto and London are the two transplant centres in Ontario.

No cadaver livers came into Sick Kids hospital during July or August this year, but two became available this past weekend resulting in transplants (including the other OTC case I wrote about earlier). The waiting period for a cadaver liver is very random.

The first living donor transplant in Toronto was performed in 1996.

Toronto is the largest, most experienced living donor transplant centre in North America.

The list for people needing transplants in Ontario is maintained by the Trillium Gift of Life program. They maintain a publicly accessible list that tells you how many people in Ontario are on the waiting list for organs at a time. At time of writing this, there are 235 people in Ontario waiting for a liver transplant (both adults and children). You can check the current number of people on the list here.

Baby's Blood Type is B!!

2011-09-07T11:03:00.000-04:00

We've been waiting prenatally to see what baby's blood type is in order to be able to plan a bit ahead for the needed liver transplant.

Baby's blood type is B!! You might ask why I'm excited to hear this. We knew that the blood type would be either O or B, based on the blood types of myself and my husband. It was a 50/50 chance either way. Here are the statistics on why this is good news. (The +/- factor has no influence on liver donations, and the lab report didn't specify +/- anyway.)

In Canada, 46% of the population have an O blood type (39% O+, 7% O-).

In Canada, 9% of the population have a B blood type (7.6% B+, 1.4% B-).

Being B, he can receive a liver from someone who is either O, or B blood types. It slightly raises the number of potential people that he can receive a liver from than if he was O, since O can only receive a liver from another O.

From the opposite perpective, someone who is a B blood type, can only give to someone who is B or AB (AB is a total of 3% of Canada's population), whereas O can give to anyone. So if a B blood type liver became available, there are less people that it can be given to...only B or AB blood types.

The fact that baby is a B blood type slightly lowers the waiting time involved for receiving a cadaver liver than if he was an O blood type.

Ok, so I know that most people won't be nearly as excited about this piece of info as I am, but it's a step in the right direction for us!

If you happen to be interested in applying to be a donor, let me know, and I'll send you more information.

How to Become a Living Liver Donor

2011-08-27T18:05:00.000-04:00

I've had a few people ask me what the process is to be tested to be a donor for our baby's needed liver transplant due to his genetic condition of Ornithine Transcarbamylase Deficiency. I had posted a little bit about our meeting with the transplant team earlier, but not the actual application process.

If you are interested in being a potential donor, you must be either O blood type, or possibly B blood type. Positive/negative doesn't matter. We are currently waiting on results to find out whether baby's blood type is O or B. If you are O, you can be a donor no matter what blood type the baby is. If baby turns out to be B blood type, then B blood types can also be donors.

For other info, see the same link as above...Meeting With The Transplant Team. You will see that currently they would really only consider people under 150lbs. However, if you are bigger than this, and are still interested, please keep the thought... If baby grows well after birth, and passes the 10lbs mark, then that raises the maximum weight limit for the donor. You could even submit your application in the meantime, and they would probably keep it on hold until baby reaches a bigger weight.

This is a link to the Liver Donation Manual. There are a few things in it that don't apply to our situation - like the fact that normally they don't look at potential donors until the person is on the transplant list. Since baby will be on the list immediately after birth, they are looking at the possibilities of screening donors now. It's a very detailed document about the procedure!

Finally, here is a link to the Donor Health History Application Form. Where it asks for the recipients name, we are using "Baby Boy Babcock" for now, and he will be at Sick Kids. If you need any more info let me know, and I'll give you the number for the living donor transplant co-ordinator at Toronto General Hospital who looks after all this, and answers questions for those considering the process.

Testing Baby's Blood Type via Amniotic Fluid, and Other Stuff

2011-08-04T13:05:00.001-04:00

After meeting with the transplant team a couple weeks ago, one of the big pieces of missing info was "What blood type is the baby?" By knowing the blood type definitively, it helps the process along by knowing who can and who can't be a donor. If we know ahead of time, they can put baby on the transplant list probably as soon as I'm in labor, or right at birth. It also helps potential donors know if they would qualify or not.

I knew they had taken extra amniotic fluid as a just in case measure when I had my amnio done back in June. I mentioned this to the transplant team as a potential source of information for blood typing, and that I would have genetics look into whether blood typing could be done in this way.

It took some research, but it can be done! Sick Kids has found a lab somewhere in New York that will process the extra amniotic fluid to find out the blood type definitively. I think this is pretty cool on a theoretical, scientific, research basis. I need to fax back the consent forms later today.

A couple days ago, I had more appt's in Toronto, and afterwards I met with Angela, mom of Baby Bronson. He just had a liver transplant a week and a half before, for completely different reasons than why we are, but it was nice to talk with someone about the liver transplant experience in and of itself. Her baby is looking really well, and was moved out of (Pediatric) ICU later that day. I had a little tour of the PICU floor, which is where we will be spending time after baby is born.

At this point, I have no more medical appt's booked for another 3 weeks, unless something pops up. I think this is the longest time without appt's since the very beginning of the pregnancy. I will go down for a social visit with my mom and aunts one day in between though, as they will be heading down to Toronto from Northern Ontario to participate in the Longitudinal Study for Urea Cycle Disorders that we are all a part of.

On complete other topics, our house is really quiet this week. We dropped our daughter off at overnight camp for the first time. She is 9. And she was super excited to go! But the house seems really strange without her here.

Liver Transplant Team Meeting Results

2011-07-21T23:57:00.002-04:00

Today we met with the liver transplant team at Sick Kids, and learned the following.

1) The surgeon has no conditions on minimum age or weight. As soon as a liver is available, either cadaver liver or living donor liver, he will do the surgery. This was probably the most surprising piece of information for us, since we assumed there would be a minimum age/weight or both. He said if we had a living donor ready the day baby was born, he would perform the surgery that day.

A living donor is someone (related or unrelated) who donates (via surgery) a part of their liver to be transplanted. The donor's liver regenerates and grows back into a full liver...it's the only organ that will regenerate. Pretty cool, eh?

2) Having a living donor for the day of the birth is nearly impossible because they do a maximum of a 15:1 weight ratio for donor to baby. My previous two pregnancies have resulted in babies that were less than 6.5 lbs. At 6.5 lbs for baby, the adult donor (18 years old or older) would have to weigh a maximum of 6.5 lbs * 15 = 98lbs!!

However, it is possible (but doubtful!) I would have a bigger baby, and also possible that baby will grow after birth. With this in mind, here are some potential weights of baby vs weights of potential donor.

Baby weight = Maximum Donor Weight
6.5 lbs = max donor weight of 98 lbs
8 lbs = max donor weight of 120 lbs
10 lbs = max donor weight of 150 lbs

3) Living donor would also have to match blood types with the baby. We know based on our own bloodtypes that the baby will either be B or O blood type. The +/- part doesn't matter for liver transplant. We will try to find out which one baby is before he is born.

If baby is O, then donor must be O blood type.
If baby is B, then donor can be either B or O blood type.

4) Sick Kids typically does 20-25 liver transplants each year, but this year the numbers have been much higher. They are currently working on transplant number 22 for the year, and it is still July. Approximately half of the transplants are via living donor, and the other half are from cadaver livers.

5) Approximately three transplants have been done over the last 2 years for urea cycle disorders (of which OTC is one of six), but all were for babies that were diagnosed after birth.

6) This is the first time they have had a liver transplant in the planning stages before the baby is born. Typically only heart transplants are prenatally known to be needed after birth.

7) As soon as baby is born, he will go on the transplant list to receive a cadaver liver. Wait times to receive a liver can never be guaranteed. The hope is that baby can survive long enough to receive one using the medical treatment that the metabolic genetics team has come up with, as stated in my previous post The Treatment Plan (click here).

I'm sure I've probably missed some info in here. If there is anything I missed that you would like to know, ask, and I'll answer!

The Treatment Plan

2011-07-10T21:39:00.001-04:00

We had a long meeting this week with metabolic genetics. We were not originally sure if the hospital would be willing to treat baby's OTC (ornithine transcarbamylase deficiency) or not. I wouldn't have been surprised if they had said "Sorry, but this is beyond the scope of our abilities."

However, they are optimistic (much more so than we are) that they can treat baby. It requires a LOT of work, and co-ordination between numerous departments of a number of different hospitals. Since I know we have many people interested in how this will work, I will try to outline what we know so far. We will know more specific details later, as we have not yet met with the transplant team, and they will answer many questions regarding transplant at that point.

1) Ideally the doctors would have me deliver by planned c-section, so that they will be ready and prepared for us and baby with a known time of arrival, but I have decided against this for a combination of reasons. It's surgery and I've never had surgery before. The surgery itself could potentially make ME sick with my body and OTC reacting to the stress of the surgery. But mostly, I've decided to deliver naturally because it's the one thing in this whole process I can keep "normal", and I need that one piece of normality!

2) When I'm in labour, I will be given a drug called Ammonul by IV which will reduce the ammonia in my bloodstream. The theoretical thought is that the drug will also pass through to the baby, helping the baby to have lower ammonia levels after birth as well, since the birth process itself is hard on baby and breaks down protein turning it into the dangerous ammonia. Medical literature says this has only been done once, but we suspect it may have been done more often than this.

3) Once baby is born, he will immediately be given an IV with a 10% glucose solution in order to give him calories so that protein isn't broken down.

4) After this, I'm guessing within an hour of birth, baby will be taken across the road from Mount Sinai Hospital to Toronto Sick Kids Hospital. NICU is not set up for this situation, so baby will go straight to Pediatric ICU (PICU). The "tube" team (I don't remember what they are actually called!) will put tubing into baby to be ready for dialysis. Baby will most likely be on dialysis 24/7 most of the time. Baby will also be put on a strict, medical diet of a special formula made up of amino acids and sugars. Ammonia levels will be monitored constantly. The hope is that baby will eat by mouth, but if not, baby will be fed through an NG tube (yes, more tubing)

5) It's really important to keep a balance between calories needed for growth and formula given so that baby isn't taking in protein, or breaking down his own protein. If this happens, ammonia can build up, which would cause brain damage. This is why ammonia is constantly measured, and if it goes high, dialysis will be started.

6) Using the above methods, we hope that baby does ok and grows well in the meantime. Everyday holds potential unknowns, and we have been told to expect baby to take 4-5 weeks to become stable.

7) If baby needs some extra help during this time, it looks like I will be flown down to Pittsburgh with baby for an experimental clinical trial where healthy liver cells will be injected into baby's liver daily for a week. This is a very controversial cell therapy trial, that just opened in the last couple months, and they are looking at having 20 children in the trial over a period of 5 years.

8) All of the above is being done in order to keep baby alive long enough to have a liver transplant. We will be meeting with the liver transplant team soon and have many more answers after this meeting. Once a liver transplant occurs, there is no more risk of brain damage from elevated ammonia levels, and baby can begin eating foods that contain protein. How long we have to wait after birth until a transplant can be performed will be known after we meet with them, as well as how long baby will be kept in hospital after the liver transplant. I'll update on all the transplant issues after we meet with that team.

We aren't feeling overly optimistic about this, probably because we've been through the death of a baby from this genetic issue already, but with the advances that have been made since then in the last 8 years, we are willing to try for treatment.

Fetal Echo Cardiogram

2011-06-30T11:21:00.001-04:00

The fetal echo cardiogram on Tuesday at Sick Kids went fine. No problems at all. So that's good news. The medical fellow who did the ultrasound was 16 weeks pregnant with twins...can you imagine how hard it would be for her to have to tell people that things aren't good with the heart while she's pregnant herself? A tough spot to be in.

So we're glad that went well, because if it hadn't, we're pretty sure that the possibility of using any treatment options/end results liver transplant would have been eliminated.

On another note, I've been looking for blogs from anyone who has documented their time in treating a baby with OTC. I havn't managed to find any. I have found a few blogs that talk about treating their children with other urea cycle disorders (of which OTC - ornithine transcarbamylase deficiency is one of six urea cycle disorders, and the most common of the six).

Even though it's not exactly the same (but similar) I found Katie who posts about her experiences with her daughter (who will be 1 in August), who has another urea cycle disorder called Carbamoyl Phosphate Synthetase 1 (short form is CPS-1). They had a liver transplant done at 4 months of age, and she has many posts about the reality of the disorder and the reality of life after transplant.

In case you are interested in taking a look at her blog, it is at:
http://from-magerks-to-i-dos.blogspot.com/

Not What We Were Hoping For

2011-06-28T03:05:00.000-04:00

The genetic results are finally in, but unfortunately they are not what we were hoping for. We received a call after business hours on Wednesday evening from the head of genetic and prenatal diagnosis to give us the news. He had just received the results (by Blackberry!) from the Yale lab. It's an OTC affected boy. AGAIN. Crap.

The doctor who called wasn't even in Toronto when he called... he was in Ottawa at a conference for a few days. He asked if he could share the news with the other doctors and counsellors that we deal with, and we said yes.

We had appointments already booked for the next day (Thursday). I had my 20 week ultrasound, and an appointment with my internist and OB. All the appointments went late due to the genetic results.

The hospital had just done a teaching case about our situation that morning to the residents and doctors, so many of the people I saw that day said "We just had a teaching about OTC today." I said that I knew (it had been planned for a few weeks), and that it was because of me, the only OTC (ornithine transcarbamylase deficiency) case they have. Of course, when it was planned, the results were not in yet, and my OB had just received the results that morning (via his Blackberry!), which resulted in more teaching regarding the affected baby and choices we would make.

Our doctors at Mount Sinai are fabulous, and make it clear that all final decisions regarding care/treatment etc. are up to us. They respect the fact that we are well versed in our diagnosis, and have respect for our decisions.

So, in the meantime we now have appointments booked with Toronto Sick Kids metabolic genetics department to go over progresses in any potential treatment options since the last time we went through this 8 years ago.

I also have an appointment with Sick Kids tomorrow for a fetal echo cardiogram, because just in case we didn't have enough to deal with, they found a slight potential problem with the heart during our biophysical ultrasound last week. Even though OB thinks it is probably fine, we are being treated with white gloves and he is sending us for this specialized ultrasound now. If ONLY the heart issue was the only thing we had to deal with instead of the OTC!

50/50 Chances

2011-06-01T13:07:00.000-04:00

My amnio was on Monday. My own OB performed it this time, and it was a much better experience than I've had in the past. He was super quick at doing it, and it didn't hurt as much as previously, and there was no cramping involved.

I had to somewhat laugh at the post-care instructions...bedrest not required, but no working, lifting, carrying, bending, laundry, dishes or exertion for two days. Um...so what does that leave?

We were expecting to get results today (Wed) but got partial results yesterday instead.

It's a boy. With being affected with OTC Deficiency (and X linked disorder) this now means that our chances of a healthy baby have dropped from 1 in 4 to 1 in 2. The 25% chance of baby being affected has now been raised to 50%. One in two. 50/50 odds. The odds suck.

I had been hoping to hear it was a girl so that we could shed our worries. I admit to crying when I found out. I'm glad for the info, but now our concerns have been raised.

For those who don't know our history, baby being affected = baby not living for more than a few days after birth.

We've already "been there, done that". I don't feel like doing it again! In 2003 our son Colin was affected, and died 3 days after birth. I had found out at 18 weeks pregnant with him that he was affected. It was a brutal time for us...

For now, we need to wait for the full genetic analysis. They can't even do it here in Canada, they have to ship the cells from the amnio down to Yale in the States to be examined. We should have the results in 2-3 weeks. That time is going to be a terrible waiting period.

In the meantime we're waiting, family is waiting and friends are waiting for the news. Many of them were with us the first time around and watched us go through everything that time. We have many, many people rooting for us that baby will be ok. I sure hope so, because I'm afraid of the mental basketcase I will become if he's not.

I also feel a little bit like an "untouchable"...people don't know what to do or say, so it just gets avoided in many cases. I also feel like we are getting talked about by people, which is probably true, mostly out of true concern for us, but I am fairly private person all in all (even though most people would think of both my husband and I as extroverted!) so it feels a little weird to feel like my life is on a very public display. I don't want to be pitied...I just want people to say "It's completely crappy that you are going through this, and I hope/pray that all ends up good." It's that verbal/written acknowledgment of the situation itself that I personally appreciate.

Overall, despite the 50/50 situation, I am still optimistic that we will have a healthy child (boy!).

Quite the week!

2011-03-11T22:01:00.000-05:00

So, first of all, I'm writing for mostly myself. I'm kind of hoping that no-one I know in real life will read this for at least another month. So if you know me, please keep this a secret!!

One week ago today, on a Friday, I took a pregnancy test, and it was...POSITIVE. That was three days before my period was due, but I suspected, because the weekend before I slept, and slept, and slept. I slept for 14 hours each night, when I normally only get about 7 or 8 hours of sleep.

So...due to my being a genetic mutant, being a carrier of ornithine transcarbamalase deficiency, (OTC Defiency for short), Link to older post describing otc deficiency, my first step past telling my husband was to phone my genetic friends at Mount Sinai in Toronto.

The last time I dealt with Mount Sinai was in 2003, which is when my son who was affected by this genetic disease, was born and died three days later. I had known during the pregnancy that this was the case - we had an amnio done at 16 weeks and the results were in at 18 weeks. There is a 25% chance that it could be an affected boy again (which would die a few days after birth), 25% chance for a carrier girl which means watching diet very carefully, and a 50% chance that everything will be fine. I'm hoping for the last one. :)

I phoned my genetic counselor at Mount Sinai, but she is no longer there. I got a hold of the secretary, who told me I needed a referral because it has been more than two years since I've been there. But, but, if you just go get my chart you'll see that it's really, really thick, and I *shouldn't* need a referral I was thinking.

Fine. I phone my family doctor, hoping to get a referral from him. Apparently he's not back in the office until APRIL. Not much help to me. I got a hold of the front desk of the practice who told me I should use the after hours clinic to get a referral. Getting into the after hours clinic (we have no real after hours clinics here), is like getting into a radio telephone contest. Nearly impossible. With that, plus the fact that it's not the ideal place for a referral, I set about another route for my referral.

I'm involved in a longitudinal study for Urea Cycle Disorders (of which OTC is one), and I had just been contacted about a follow up visit a year and a half after my first visit. This is being done at Sick Kids, right across the road from Mount Sinai, so I asked if they could refer me. Within 24 hrs, referral was complete and I had a phone call from Dr. Chitayat's office. Dr. Chitayat is the most amazing doctor and he is the head of Genetics and Pre-Natal Diagnosis at Mount Sinai. He is brilliant, nice, and compassionate.

So, on April 12th at 9 weeks and 1 day according to LMP, I will go to Sick Kids in the morning for my followup visit for the longitudinal study, grab lunch, and then head across the road to the Hydro Building where Mount Sinai houses their high risk clinics, prenatal ultrasound and genetics departments for a dating ultrasound and then a chat with genetics.

I'm feeling a little weird about telling people, and am pretty sure I'm going to wait until after this first ultrasound to ensure the pregnancy is viable. I've had a miscarriage in the past, at 9 weeks, but apparently the baby stopped growing around 5 or 6 weeks. It will mean an almost 10 year age difference between my daughter and this baby, and I'm pretty sure at this point people aren't expecting us to have another child due to our traumatic loss of our son Colin and the amount of time that has since passed.

I'm feeling optimistic/good about everything this time around though. Last time I knew from the start that it wasn't going to work out well. So put us in your thoughts/prayers anyway though!

OTC Deficiency - A Genetic Abnormality

2010-12-16T11:46:00.000-05:00

My husband likes to tease and tell people that I'm a mutant. It's not really wrong. It's true! I'm missing an enzyme that tells the body how to metabolize (use) protein properly.

There's a name for what I have. Don't worry, I don't expect you to remember it. It's Ornithine Transcarbamylase Deficiency, typically denoted as OTC Deficiency. If you really want to remember it, just think OTC - Over The Counter. If you watch House, you might have heard of it. In the very first season, one of the characters had OTC Deficiency. I didn't see it, but apparently it had to do with a man who got sick, his brother snuck a steak into the hospital for him to eat, and then he got much more sick!

I've known about this since I was 4. I have this lovely family memory of going to Ponderosa (does Ponderosa exist anymore?) and getting to eat jello while none of the adults cared what the kids ate. It was nearly the whole family on my mom's side there...grandparents, their 5 kids and spouses (ok, maybe 4...I think one was missing) and numerous grandchildren, of which I was one. We had all just had our blood taken to be analyzed. ALL of us!

At that point, in good ole 1981, my mother had had two pregnancies after I was born. With each, she had a boy who was fine upon birth, and then hours later got sick. Each lived for 3 days. Her sister had also had a boy. Same thing. Fine at birth, got sick, died on day 3. And my mom had been a twin, but her fraternal twin brother had also died on day 3, and he had been the larger, healthier baby at birth.

All of these births were diagnosed as SIDS - Sudden Infant Death Syndrome. The family got together, contacted the health unit and said, Listen...this is not SIDS. There is obviously something more here, since there have been 4 deaths of baby boys in the same family. The doctors did some investigating, decided that there was a potential that it was OTC Deficiency, and that's how we all ended up going in for blood work.

Turns out that OTC Deficiency is an X-linked metabolic disorder. The boys are more highly affected (in my families case that means neonatal [newborn] death), because they don't have the extra X chromosome to make up for the defective one if theirs is defective. It's a 50/50 chance of the baby getting the defective gene with the missing enzyme.

So all in all, the odds are like this. 25% Healthy Baby Girl. 25% Carrier Baby Girl. 25% Healthy Baby Boy. 25% Affected Baby Boy (in my family = neonatal death at 3 days old).

We know that my grandmother was a carrier (but don't know about HER mother). Grandma had 6 kids. 4 girls - all carriers, 1 boy unaffected, and 1 boy (mom's twin) who died. In my generation, although there are many grandchildren, only two of us are female carriers. The other one has decided NOT to have children, partially or all because of the fact that she is a carrier herself.

That leaves me. And a story to be told in a future post.

Your Child's Personality

2010-10-21T08:23:00.000-04:00

Have you ever done a personality test? To see what your personality characteristics are? Admittedly, there a lot of really hokey ones out there that i wouldn't recommend other than for a laugh. But I have found that the Myers-Briggs testing runs true. Myers & Briggs were a mother and daughter pair born in the late 1800's who were spent nearly their entire lives putting together their theories on personality types, which were based originally off of Jung.

Divided into 16 categories, some more rare than others, I have found that this test rings true! Do you know what category you fall into?

I am an "ENTP". Extraverted, Intuitive, Thinking, Perceiving
My husband is an "INTJ". Introverted, Intuitive, Thinking, Judging.

I was interested in knowing what my daughter might be. She is 8. I found a site, where parents can answer questions, and find out. Here's the link. They don't tell you what the third of the fourth characteristics is, because it is still in progress of developing, although in some children you can tell.

So, my daughter is "INJ" according to this, and we're pretty sure the missing one is "F" making her an "INFJ". I thought it was pretty accurate in it's description. I have cut and pasted it here, from personalitypage.com

Portrait of an INJ Child

(Introverted iNtuitive Judging)

INJ Traits

They have vivid imaginations

They're curious about everything, and are always asking "Why?"

They enjoy spending time one-on-one with others, rather than in large groups

They're often off in their own world, and have a dreamlike quality

They enjoy art and music

They love books, and especially enjoy fiction

They're likely to hang back and watch before participating in a social situation

They're intensely private, and don't always share their thought and feelings

They like structure and are unsettled by chaos or unplanned events

They prefer sports that focus on individual performance rather than team sports

They are perfectionists

They're serious and intense

They often seem older than they are, and may have older friends

They are original and independent, and value their uniqueness

They're not overly concerned with grades, but they want to completely understand a subject that interests them

Potential Strengths

They're usually very intelligent

They can grasp the big picture easily

They can see any far-reaching consequences of their actions

They're very resourceful

They are extremely creative and imaginative

They easily come up with good ideas

They're usually well-liked by their peers

They will completely master a subject that interests them

Their desire to be in control of themselves makes them take responsibility for their actions

They are usually confident in their ideas, and know instinctively when they are right about something

Potential Weaknesses

They have short attention spans

They get bored easily with details or routine tasks

They won't put any effort into doing something that doesn't interest them

They frequently don't hear people

Once they have made up their mind about something, they can be very stubborn about it

They ignore details

They are unsettled by change, and don't usually adapt well to new situations

They're uncomfortable and somewhat overwhelmed by large groups

They are rather unaware of their environment, and seem "out of it"

They are rather self-centered, and may be unaware of how their actions or words affect others

They can be controlling and bossy

Although they come up with ideas easily, they don't do as well implementing their ideas

INJ Learning Style

INJs are extremely curious and intellectual children who need a wide variety of mental stimulation. When they are interested in a subject, they will naturally want to know everything about it. Teachers should be prepared to point INJ children towards sources where they can learn more about the subject.

INJ children don't do well with tasks that require following prescribed steps in a plan or rote memorization. They find these kinds of things extremely boring, and they will resist doing them. They also don't like to do things repetitively. Once they have done something once, they are done with it and want to move on to the next thing. To keep things interesting for the INJ, teachers should give them the basic theory and the desired outcome, and let them figure out how to get there on their own.

Teachers should realize the INJ's weakness of not always being aware of their environment, and recognize that if an INJ didn't hear the teacher, it doesn't necessarily mean that they weren't listening. Sometimes the INJ's private world overtakes the INJ to the point that they completely tune out their environment. As much patience as possible should be shown with this characteristic. INJs will develop some control over this as they grow older.

INJs love to come up with ideas, and naturally want to put their ideas into some kind of structure or plan. They want to do this on their own, with little or no direction. They highly prize their ideas and their competence at performing their projects, and are threatened by someone giving them too much direction. This is almost an insult to the INJ, who bases a great deal of their self-esteem on their independence.

INJs thrive doing independent projects that require creativity, such as science projects or writing projects. They will probably not enjoy group projects as much, although they are likely to be fine working with one partner on a project.

Answer the INJ's many questions as thoroughly as possible. If you don't know the answer to a question, be honest and tell them that you don't know. Offer possible avenues for discovering the answer, such as library research.

Present the rules and expectations clearly and consistently. INJs naturally crave structure and order. Although they don't want to be told exactly how to do something, they need to understand any rules clearly.

INJ Special Needs

INJ children need a good amount of time alone. They get most of their energy from within themselves and their rich imaginations, so they need adequate time alone to recharge their batteries. After a long day of school, the INJ may head to their room to spend some time alone. Respect this need of your child's, and understand that once they have spent time alone they will be ready to interact with you. Don't push them to be around yourself or others until they have spent some quality alone time. An INJ who doesn't get the chance to spend any time alone will be irritable, cranky and tired.

INJs who have made up their minds about something can be quite stubborn and unwilling to compromise. When faced with an INJ who has "dug in their heels" about something, take some time to present them with clear and valid alternatives to their way of thinking. This will help the INJ to not become overly rigid, pompous and unbending in their views.

Socially, pre-teen INJ's are usually fairly reserved and may be intimidated by large numbers of people. They like to watch for awhile before participating. It's best not to push the INJ to interact socially before they are ready. Allow them to watch first, and jump in when they want to. If you are a very extraverted or gregarious adult, don't expect the same behavior your INJ child. INJs usually prefer to interact with one person at a time, and enjoy having a couple of close friends rather than a number of acquaintances. As the INJ gets a bit older, he or she will probably become more social. In the meantime, understand that your child is probably uncomfortable with large groups of people, and don't make them feel guilty for that fear. If your child is afraid of walking into large social situations alone, you might arrange to walk in with your child, or have your child go to the event with a friend.

Too many suggestions or feedback on a project while it is still going on may interfere with the INJ's creative energy. Much of the interest in actually doing the project comes from the INJ's drive to prove their inner visions and independence. Any "interference" from the external world will confuse the INJ, and it may cause them to doubt themselves or their idea. In any event, it will usually cause them to lose interest in the project and abandon it. It's probably best to wait until an INJ's project is finished before commenting.

Talk through their ideas with them one-on-one. This will help the INJ to put their ideas into context within the external world. The INJ doesn't naturally have a high awareness of how their intensely personal visions fit into the world. Getting them into the habit of talking through their ideas while they are young will help them develop the ability to apply their ideas realistically and effectively.

The "Missing" Letter

Adult personality types have four letters, while for children aged 7-12 we use three letter types. What happened to the missing letter? It's there, we just can't usually determine what it is until after a person is 13 years old. INJ kids will grow up to be either INTJ "Scientists" or INFJ "Protectors". At this stage in their development, it's not obvious whether they will choose Thinking or Feeling to complement their Intuition preference. You will see the child practicing both Thinking and Feeling as they settle down into their preferred function. In some children, it's possible to distinguish their "missing" letter, but for many kids we just have to wait a few years to be sure.