Phoenix update

I feel like I have this ongoing love affair with Phoenix. There is something about her that makes me notice, over and over, what a sweet child she is.

One of the things I like best about Phoenix is her sociability. We recently had the twins first birthday and had a lot of friends and family over. It was busy, loud, and hectic and Phoenix behaved beautifully. She made the rounds from Aunty, to Grandma, to Grandpa, to Uncle and back to Aunty. She visited, she ate, she played and she opened Christmas gifts. It was an awesome night for her. She got some of the most thoughtful gifts: all things Minnie Mouse and some lovely clothes to grow into. We even were given matching dresses for all the girls to wear. There is room for them all to grow into the dresses, so I can wait until the twins are full time walkers and hopefully do a photo session with them all.

I love how you can see her sandle gap (space between big toe and 2nd toe). It is  a marker for DS, one of many that she has.

I know I look through rose tinted glasses at my own child, but I frequently wonder how I managed to get such a great kid. She's pretty easy to manage, her behaviour is excellent and even when she is asserting herself with her sisters she is polite. I frequently hear her high pitched, panicked voice exclaiming "My Ipad please!" to her sisters. She dislikes getting her nails clipped, but when I do she thanks me afterwards. And at night when I lie down to cuddle her to sleep, she holds her bear and gives me her bunny to cuddle. She shares her beloved cuddle toys.

I know not every kid is like this, although we all love our children for who they are. But I am so thankful that this particular kid is mine.

This and That

I haven't updated in a while, partly because of being extremely busy, but partly because at the end of the night when all the kids are in bed, the last thing I want to do is to sit in front of a computer and write.

Phoenix:

Phoenix has been wonderful lately. School is going well. We have set up funding for another 6 months for a private OT and a private aide. We get our amazing, fabulous, talented aide for 9 hours a week and an hour of OT a week. We are seeing progress in Phoenix's independence skills of pulling her pants up and down, being more engaged in the potty routine, trying to brush her teeth herself and doing a better job of eating with a fork and spoon.

Phoenix is still a delight and I really treasure our time together. She has started with some pretend play, making up animals that she sees and telling me what colour they are and what their name is (usually Amma or Gramma, funnily enough)

Me:

Our twin zygosity testing came back 2 days ago and we found out that we are monozygotic (identical twins)! Mind. Blown.

Seriously. We were raised our whole life as fraternal twins, who just happen to have a strong family resemblance. Being a twin is pretty special. Being an identical twin even more so. It makes me rethink our relationship and our upbringing. It also makes me rethink how remarkable it is that given a very similar set of inborn strengths and weaknesses, that we have pursued such different paths in life. I am a teacher to high risk and behavioural youth and my sister as a professional photographer. How fascinating.

Ash and Wren:

Are so adorable right now! They are into everything, they are more stable on their feet and getting closer than ever to walking. They are great eaters and love feeding themselves. I give them real people food and they tackle it themselves. Lots of it ends up on the floor, but they chew and swallow much of it too. It's been a nice change to have kids who aren't super picky (yet!) and who look at food without the suspicion we have come to accept from Phoenix.

About being a twin

Since having my twins, I have been doing more thinking about what it means to be a twin. For Ash and Wren, I hope it means a lifetime of friendship and sisterhood, with all the good and the bad that comes with it. Of course, I wish and hope that Phoenix is the third part of this triad of love and she creates strong bonds with her younger sisters. 

I wonder if coming second, and always having Phoenix as part of their lives, will impact their acceptance of her. She has been a consistent part of their life ever since they came home from the nicu. And at 10 months old they are fascinated with her. They try to get Phoenix's attention and try to get close to her on the couch. They follow Phoenix across the room and always have a smile for her. She is a permanent part of their existence in a way that the twins are not for her. 

Phoenix still knows and remembers what it was like to receive all our love and attention. She remembers a time when she had peace and quiet and time alone with mom or dad or her beloved iPad. 

It's been hard for her to begin accepting their presence and what it means in terms of one on one time with us. She's generally very good with her sisters and has found her own way of getting back at them for so thoroughly invading her space - she invades their space now. 

Phoenix's new favorite spot to hang out by herself and play games on her iPad is Ash's crib. She very patiently waits for the twins to wake up in the morning, follows me into their bedroom and hops into Ash's crib as soon as I take Ash out. Then she asks us to turn off the light and shut the door. 

I grew up as a twin too, but in our case Meg and I came first and our brother came next. Apparently, we did not accept his presence as gracefully as Phoenix has accepted her sibs. In fact, according to my mother, we both ganged up on him repeatedly and were quite convinced we didn't want him. 

I know that my twins are identical because right from the 7 week scan they were seen to be in the same larger sac and shared a placenta (mo/di). Back when my mother gave birth to us, doctors thought that when twins were born with separate sacs and placentas (di/di) that they had to be fraternal. Because of DNA testing we now know this is not the case. Approximately 6% of di/di twins are actual identical. 

So, even though my sister and I look remarkably similar, have similar facial features, body types, height, hair colour, eye colour and blood type, we always thought we were fraternal. Looking at us, you know that we are sisters, and most people could guess that we are twins. However there are differences too. 

Until Ash and Wren were born I didn't know that head shape could impact ones facial features so much. But the girls have different head shapes, and to me look very different. I know they are identical twins, but if they had been di/di, I wouldn't be sure. They look disimilar enough to me to think fraternal. 

Maybe, it's the same with Meg and I. In order to know for sure, I finally ordered a zygosity test from a lab in the US that tests twins to find out if they are identical or fraternal. The tests are on their way to our respective houses and in a few short weeks we will know the truth!

In reality it doesn't mean that much. We are the individuals that we are, and the formative years of the development of our personality and our sense of self has passed. However, I can't help but wonder how much of our very different career paths (myself a teacher; Meg a photographer) came from a self perception that we were no similar than any other set of siblings and that if we had know we were identical, if it would have impacted our life trajectory. 

I read an article recently written by an identical twin who specialized in working with other identical twins trying to develop a better sense of self, separate from their identical twin. The author found  that it is important for parents to emphasize that each twin is their own separate, distinct and valuable person, not simply because they are part of a twin set, but because they are both individuals with their own quirks, strengths, weaknesses, hopes and dreams. Ironically enough, the twin sister of the author works as a therapist as well. 

Loss of my triplet

I've been thinking a lot lately about what significance my lost triplet holds in my heart and in my head. 

We found out about our three little embryos at my first ultrasound after my successful iui. We knew the chances of twins 11%-17% based upon my own history as a "fraternal" twin. Those are pretty good odds. The odds of triplets from iui was about 1% and the odds of higher order multiples was much less than 1%. 

You wonder if a multiple birth will happen to you, but you never really expect it. I was ecstatic when the US showed 3 little heartbeats! We did it! We conceived our babies. One of the very first things out of the doctors mouth was "selective reduction" and that we needed to consider it. 

We were excited and scared, all at the same time. Triplets! How many people get to be pregnant with triplets? And within the triplets was a pair of mo/di twins (identical, sharing a placenta). 

Identical twins and a single baby. It was a lot to consider. Looking back, I can see that the danger and reality of trying to carry 3 babies and trying to care for 3 babies never really set in. I had twins at 31 weeks after my water broke at 30 weeks. I shudder to think how early the babies could have been born if baby  C had made it. 

I love my life now with the twins. I can't imagine risking their health and safety with a third fetus growing. Yet, it was my baby too. It was alive, grew for a while and passed away. 

What if it was a girl and was identical too? What if it was a boy, giving us our only son? It's a lot to consider. 

Would we have considered SR, to make it more likely for the twins to survive and to make it to a gestational age where they could (hopefully) avoid serious disabilities? Would we have tried to have them all and then lost them all? I read a news story recently where a couple lost quintuplets. They lost ALL their babies. Heartbreaking. It makes me think how lucky I am to have the two and their older sister. 

I am especially lucky because the twins developed twin to twin transfusion syndrome (TTTS) during the last week of their pregnancy. Many, many babies die from TTTS. Some moms lose one of their babies. Some lose both. It takes more babies than SIDS does each year, yet almost no one knows what it is. 

My MFM doctors tracked and screened the babies growth diligently while I was pregnant. It developed undetected in one week, the final week before I delivered. That's how fast it can happen.

I was lucky. Ash, my donor twin, gave blood and nutrients to Wren, the recipient. Sometimes this causes strokes and other major impacts on the donor twin. In my TTTS group, a number of the surviving twins have developmental delays. Ash has a dairy allergy that Wren does not have. She also had the extra hospitalization for NEC. She is slightly behind Wren in her gross motor skills: Ash sat and crawled a few weeks after her sister did. However, Ash had sounds earlier than Wren and appears to be a better eater than her sister so far. 

Having already raised a baby with a developmental delay, I've got the milestone chart tucked nearly away at the back of my brain. I don't stay up at night worrying about it, but delays are something I am watchful of. I'm happy to say that both Ash and Wren fall well within the normal range for both their actual age and their adjusted age. No delays so far :). Of course, there is no guarentee that there won't be delays in the future, but for now the twins are still ahead developmentally of where Phoenix was at this age. Which doesn't make me sad by the way. It makes me appreciate that we had longer (and still do) at each stage with Phoenix. 

While I was doing reading about loss in multiple pregnancy, I found an organization called CLIMB Centre for Loss In Multiple Pregnancy. They have many, many stories of families losses of one or more of their multiples. If you have experienced loss in a multiple pregnancy, you can contract them here: http://www.climb-support.org

Human Rights Challenge.

I received the application for my Alberta Human Rights complaint in the mail last week and I filled it out today. Four pages of writing to tell our story, convince an investigator that the Alberta government is violating my fathers (and everyone else in his situation) human rights; with the hope that in the end, the piece of legislation which governs long term care  and access to wait lists is either struck down or modified. 

It's daunting. But exciting. I feel we have a real chance of being heard. My fathers rights are clearly being contravened. It is discrimination based upon his place of origin (Ontario) and based upon mental and physical disability. My mother, as an able bodied person of sound mind, is free to move to Alberta and access all the services she needs after 3 months, including access to health care. My father on the other hand, cannot access the services he needs to sustain his life until he has been a resident for a year. If he was less disabled and required less care, the one year residency wouldn't apply.   

This clearly discriminates on the basis of mental and physical disability. 

I've written this all out, including the impossible situation it has put my mother in. To remain isolated in Toronto or to move to Alberta and abandon my father in his long term care facility there while she gets the emotional support she needs here. 

Alberta's solution is to offer private care at the cost of $7500 a month. It is two tiered health care at it's worst. Where average income or poor Canadians must abandon loved ones in other provinces while the rich can move their loved ones close to home. What's worse, is that this policy allows the rich to cue jump, even within Alberta, because these "private" spots are found in public facilities. Which means that average Albertans who are able to apply to the wait list wait even longer for a spot in long term care. 

I'm just waiting for my formal rejection for being added to the waitlist from Alberta Health Services. Then the application goes in and we see what happens. 

Taking action

The unfairness of the situation with my father has weighed on me for some time. In a way, it has brought me back to the time after Phoenix's diagnosis, where no matter how hard I cried, railed, yelled, begged or bargained, I couldn't change the fact that Phoenix had Down syndrome. I was helpless. I couldn't change it.

Trying to get things to change in a massive system like the Alberta government makes me feel just as helpless. I went to the media, who surprisingly, featured our story on the evening news. Still nothing changed. I called Health Canada to see if long term care is covered by federal legislation: it isn't. I've written to the Minister of Health to see how I petition to have the legislation changed: no answer yet. I've called the AHS continuing care resolution team: as far as I know, my complaint has gone to where complaints against the government go to die.  And yet when questioned by the media  AHS is "working with the family" to bring my father to Alberta. I call bull shit on that whopper of a lie.

Then I called the Alberta Human Rights Commision. The investigator I spoke with said that our situation sounds complicated, but to make an application. What we need is a defining action and day of this action that the Alberta Government violated my fathers human rights. This Monday I will be formally requesting that my fathers name be added to the wait list for long term care. Presumably the answer will be no, as everyone I have spoken to at AHS has told me it isn't possible until his residency has been completed.  I'm hoping to get the rejection in writing, so I have proof of the date of the discrimination.  Regardless , the conversation  will be documented on my end and submitted with my complaint. I made sure to ask the investigator if complaints are ever launched against the government (thinking that most are against private companies etc). It turns out that you can make a complaint against the government. A preliminary investigation will be launched, and if the Commision finds that our case has merit, it will proceed from there.

The best part is that the investigation will continue even in the event of an election or if the government changes hands., which is entirely possible  given  the bad behaviour of our recently departed premier.

Disability advocacy

The focus of this blog will be changing for a bit as the challenges of my life have changed. Like many people my age, I'm dealing with the complications of having parents who are aging while at the same time raising very young children.

Two years ago my father suffered a series  of debilitating strokes. He went from a fully functioning member of society who owned and ran a company, employed sales people and paid his taxes. He was a husband, a father, a grandfather, a friend. He loved, gave love. He drank wine, cooked dinner for my mother, hosted epic dinner parties and ate danishes for breakfast. He lived his life to the fullest. 

Overnight it was all gone. 

My father lived in a hospital for a year while we waited to see if he would come back to us. He didn't. He hasn't. He currently lives in a long term care facility where he receives help eating, toileting, walking, getting in and out of a wheelchair. He can't read or write anymore and doesn't always recognize my mother. He is completely dependent on others to facilitate meeting his needs. He is totally disabled.  

My mother has been dealing with some health problems of her own. It has become more and more evident to her that she is lonely where she is and wants to be near family. Overnight their she had built for herself with my father was gone. 

She wants to move to Alberta, be near my family and watch her grandchildren grow up. How hard could a move like this be, we thought. We'll just move my dad across provinces and settle him in a long  term care facility here, we thought. 

Then we hit the wall of the Alberta legislature. Who mandated a number of years ago that in order for someone to get a place in a publicly funded long term care facility that a 1 year residency must be completed. So someone who is completely helpless, unable to care for themselves, must live independently for a year before they qualify for long term care. Or, the family must pay for private care for a year while they fufill the residency. We cannot even apply to the wait list until this year has passed. It's ludicrous and totally unfair. As far as I know, no other province has a policy like this. Ontario certainly doesn't. 

If you're happy and you know it

Phoenix has finished off her first year of preschool! I'm a little sad for her that her structured activities have ended for the next 2 months, but happy that we aren't ruled by her schedule for a while. We have an amazing developmental aide working with her 3 afternoons a week, so she isn't totally work free for the summer. Jen is working on a variety of skills with Phoenix including eating with utensils. Phoenix seems to think that the way the world works is that parents feed their kids, so we are trying to disabuse her of this notion and encourage her to feed herself. It's slow work with a lot of bribery. "Do you want to watch your iPad? Then take a bite with your fork." Thank goodness, it frequently works. We are also getting her to try a wider variety of foods, with bribery as well. Baby steps, but definitely steps in the right direction.

Phoenix was treated for an infection recently, and right after she was, something incredible started to happen. Her hair started to grow back. She's currently sporting about 8-10 patches of hair on her head that is growing. With her type of alopecia, this scenario is really unlikely. I had pretty much resigned myself to the fact that she would be bald her entire life. But who knows? Maybe it will grow back?

We have also gotten Phoenix to start wearing her glasses more often. She was wearing them in school regularly, so now it isn't as difficult to get them on her for large portions of the day. And she looks REALLY cute in them.

One thing that is unique yet concerning about Phoenix is her complete inability to admit she feels anything other than happy. She can be bawling her eyes out and if asked if she is sad will shake her head and say and sign "no, happy". It's funny, because she is obviously not happy, but concerning because I hope she doesn't grow up suppressing her emotions. It's not something we taught her to do either. She hates to see others upset, hates it when her sisters cry or her friends are sad, and doesn't like to be sad herself (even though she often does feel sad and will cry). I'm not sure what to do about it. I don't want to push her to say something she doesn't want to say, but I also don't want her to suppress how she feels. I think this is something that we are just going to have to keep our eye on.

Keep your eye on the prize

We received Phoenix's end of year IPP and Mike read it to me over the phone (I am away visiting my mother in Toronto).

I've been involved in many, many IPP meetings through the years as a teacher for at risk youth. Most of the time the goals and results are not a surprise to the youth or their parents and the meetings are just a formality. 

With a kid with DS it's a little different as so many more areas are looked at (OT, PT, SLP) and academic knowledge. I've heard from other parents how challenging and upsetting these meetings are because the focus is often on the deficits, especially in comparison to typical peers. 

So Mike read me her scores over the phone. There were some 1%'s and some 8%'s and and even a -4 in something, although I can't remember what. 

And my reaction surprised me. I laughed. Loudly, and for a long time, because the numbers are so at odds with my perception of Phoenix and her development. 

Because we don't compare her to her typical peers (why would we? She's not typical) we just don't look at her in a negative way. Ever. 

We don't focus on deficits. We look at areas that we want to work on (lately articulation and feeding herself with utensils, both of which she is making gains in) and we go from there. 

I understand the need to make these comparisons because her funding and spot in the program need to be justified. 

However, it's not really fair to compare Phoenix to other typical children her age. She not typical. Typical kids don't have low muscle tone which affect their fine and gross motor skills as well as their speech. Typical children don't have the same challenges. Typical don't attempt to learn a skill (like jumping) over and over every single day, with a huge smile on their face and then try again because it is fun to do so. 

Because we have taken the mindset we have, and because we are great at supporting each others resiliency, these meetings don't phase us. I'm going to listen in to tomorrow's actual meeting so I make sure that Phoenix's strengths and in particular, her strong academic knowledge, are noted and touched upon. Because these meetings can't be all doom and gloom and focusing on what she can't do. They need to reflect the whole child. What she is good at and what she needs to work on.

Phoenix recently started using the big kid swing. She hasn't got the hang of pumping yet, but she is stable when I push her. And she loves swinging.
 

So to parents that do have difficulty with these meetings, a word to the wise. Keep your eye on the prize ie just remember that you have a fantastic kid.

We don't look at our friends and loved ones and judge their worth in terms of how well they perform on standardized tests. Why would you judge the worth of your child that way?

This little light of mine

Now that I am at home on my maternity leave with the twins, I am spending more time with Phoenix than I have in a long time. The more time I spend with her, the more I am enjoying the growth and independence that she is slowly gaining for herself. 

We haven't had the regression or acting out that I had been anticipating since her sisters have come home. In fact, Phoenix has accepted her sisters beautifully. When I am holding one of the babies, Phoenix will hug and kiss her, then tell me it is my turn to do so. We take turns hugging and kissing the babies while I manage to steal hugs and kisses from Phoenix too. I am all too aware that the window for hugs and kisses from your children closes quickly, so I get in as many as I can while Phoenix is still a willing participant. 

Phoenix had been a joy lately. She is communicating her wants (playdo and painting are her most recent loves) and we get to spend quality one on one time pretty much every day. Her behaviour is excellent and she has listened like a pro at some recent appointments that have been long and boring. I've been so proud   to be seen with this sweet, sensitive, loving, well-behaved child. There is a light there, inside of Phoenix and lately it is shining so bright. Let it shine, let it shine, let it shine. 

Long time no talk!

I know it has been a reaaaaally long time since I have updated. But what can I say, I have 4 month old twins and life is sooooooo busy. Whenever I have a free moment to myself I am catching up on sleep, housework or BBC.

        My Beautiful Phoenix

Brief update:

Phoenix is doing great! She is 4 and we had a small party with some of our DS families at a local gym. It was "lead" by some of the staff but really involved a lot of free play in the gym with props, balls, scarves, scooters and hoops. The kids had a super fun time, especially the birthday girl who kept trying to escape to the other half of the gym where basketball practise was happening.

Phoenix continues to do well in her preschool and has been in the middle of a language progression: moving from 1-2 word sentences to 2-3 word sentences. I get a lot of "Thank you Mom" and "Ok Mom" and describing things with the colour and the object. It's wonderful to see her continue to make progress and be able to express herself more fully.

The twins are also doing well and are only a lb apart now in weight. Ash is 10lbs 13 oz and Wren exactly 1 lb more. At one point there was a 2 lb spread after Ash had been hospitalized for NEC and had to be off food for a week. But she has definitely rebounded and is catching up to her sister. The just went for their 5th round of RSV antibodies yesterday to prevent them from getting sick. As preemies they are more susceptible to respiratory illnesses and more likely to develop pneumonia and to be hospitalized if they do get sick. So any added protection is a bonus. They are 4 months old today, but we and the doctors still treat them like 2 month old babies - which is what they would have been if they had made it to their due date. This is called their adjusted age. They are doing all the things they should be doing for 2 months so we aren't worried about their development. They are bright, look around the room, have started to coo and smile at people and bat at their toys on their play mat. Life is good folks. Life is good.

 Wren sleeping peacefully.

Ash yawning

Truly identical, no?

"I want to say: that's great!"

Wren and Ash continue to grow and develop. Ash had a set back last week with blood in her poop that the doctors suspect is allergic colitis. Basically Ash is allergic to something I am eating and the most likely culprit is dairy. I've been dairy free for 5 days now and my milk is slowly being reintroduced to her diet, with no ill effects so far. She's also been having Brady's (heart rate drops, followed by an apnea). It's common in preemie babies.

The problem is that after 5 days Brady free they are ready to be released. It is only a problem because as of tomorrow Wren would be 5 days Brady free and Ash is still having them. So Wren could potentially be released with Ash still in the nicu. That would be logistical nightmare for our family.

So when I called for an update tonight I was positively giddy to hear that Wren had a Brady after I left earlier today. That's right! 5 more days with her sister! So it's not great that they are still having Brady's, but is it wonderful that they get to stay together for another 5 days.

That part is good news and I'll take that wherever and whenever I can get it.

The breast feeding is not going so well. In truth, it tanked as soon as the bottle was introduced. Knowing it was going to happen. It's really shitty actually. And when one of them refuses to latch and just cries at the breast it puts me back a step because I feel reluctant to try again. It's a terrible cycle. One I hope ends when I bring them home and feel more comfortable just trying in the security of my own house.  I'm trying to stay positive about this but as they get older and still make no progress it it harder to hold out hope that we are going to have a good breast feeding relationship. I hope I am wrong.