Thursday, 12 December 2013

You can't always get what you want

There was nothing more that I wanted this time around than to have my baby and to have the doctors send me on my way to figure it out on my own. I knew that having twins, I was at a higher than average risk of preterm labour as well as a variety of other risk factors. However, my pregnancy was going so well that I didn't actually believe that any of these risks would come to fruition. Yet here we are. The girls were born just over 2 weeks ago and have spent their entire lives so far in hospitals. 3 to be exact.

I am mostly ok emotionally, but I find the the times when I am alone, like in my car on the way to the hospital, or in the shower before I pump ( trying to get more than 1 oz out of each breast) the worst. That's where I do my crying.  However, even in the midst of my tears, I can't help but notice how different it is this time. With Phoenix the grief was consuming. And it as grief. Even at the time, even it being my first post partum experience, I knew it was more than hormones. I knew it was a hole that I could not dig myself out of without help. And I got help, thank goodness, because I made It through this pregnancy mostly clear. 

It feels different this time. It feels likebnormal post partum hormones, mixed with a good portion of "this sucks that my babies are in the Nicu; I hate pumping and wish my babies could just breast feed; and why is this happening to me again?" Yep, the 'poor me' complaint. 

And yeah, I know it could be worse,  but sorry, this fucking sucks that we are here again and that I don't get to have that experience of having m baby and then having my doctors and nurses send me on my way with a wave and a "good luck!". I don't ever get to have that. Never, because this it it for us. Nope, we get 3 kids who will be followed by pediatricians, who may all have delays and be at risk for health problems. Who may never fully breast feed. 

 It's never just easy, is it? And sadly, despite the intensity of our wishes, we don't always get what we want. That much has been made clear to me over and over and over.

Friday, 6 December 2013

Ash Morgan and Wren Charlotte: their early arrival

Early on Nov 24 I woke up thinking I was peeing myself in bed - I actually wasn't but my water had broken, I quickly packed for the hospital thinking this was it: I was going to have the twins at 31 weeks gestation. 

At the hospital it was confirmed that my water had broken, so I was given steroid shots to mature the babies lungs. This would give them the best shot as preemies, but they need to work over 48 hours before the babies are born. Labour was stopped the next day to allow this to happen and I was put on antibiotics as well to stop an infection from beginning. 

I was required to remain in hospital at that point to be monitored, and we found out that the babies had shifted and the presenting baby was bum down ie breech. So we knew that if it didn't move (which it probably couldn't with no amnio fluid) that I was going to have a c section.

On Dec 1 I woke up at 5 am with back pain and pelvic pressure, which felt suspiciously like the back labour I had with Phoenix. My contractions were about 5 minutes apart and were causing me to dialate. Finally the OB on call checked me and found me to be a 4. The concern was that I dialate quickly and that my previous labour was only 6 hours start to finish.

Thank goodness I had already called DH and had him leave for the hospital and had a friend stay with Phoenix while waiting for my mom to come in from Toronto. Because after the decision had been made to go ahead with the c section, things moved with lightening speed. Mike barely made it there before I was wheeled into the birthing room and was prepped for my spinal.

The babies were out quickly. I don't get to see Ash right away because she needed quite a bit of help initially but they showed me Wren who came out crying. Both babies were taken to nicu, while my surgery was completed. It took a long time to get my blood pressure back up, so I had to stay in the recovery room while the babies were stabilized.

We swung by the nicu on the way to post partum, but I wasn't able to hold them until hours later. They are extremely small, but doing very well. They probably won't be coming home until closer to their original due date, but everyone is very optimistic about their future.

I am now home and healing from surgery. I am pumping every 3 hours to get my milk supply in and the babies are being supplemented with donated breast milk - a plan I am totally on board with. We are establishing a visiting routine where I go with either my mom or with Mike every day to visit the babies at the hospital. I am not supposed to be driving for 4 weeks after the c section, so I need someone to accompany me to the hospital every day.

Thank goodness Mike is a stay at home dad who can maintain Phoenix's preschool schedule. I'm not sure what we would do otherwise because a NICU is not the most appropriate place for a 3 year old. Here is me with my darling Wren.

Thursday, 21 November 2013

Feeling torn

I've been having a lot of mixed feelings lately about Phoenix's delays. I see the other kids in her preschool with language skills that are so much more developed and can't help feel a little envious. These kids go to school and when they finish their morning they tell their parents what they did in school that day. That's a conversation I would really like to have. I'd love to know what she learned about and what activities she participated in! But I can't know because she doesn't have the words to tell me. I know she is happy at school because of her energy when she comes home and her willingness to go every day. But so much is missing because she can't tell me her thoughts and experiences.

But then we have other times when Phoenix is so loving and cuddly that I appreciate the length of time she has been at this stage. Most parents don't get to keep their 'baby' this long. And it is a gift to do so. Truly. I am thankful everyday for this loving, affectionate child that so willingly laughs and loves with her dad and myself. I suspect we will find out how big a gift it is after the twins are born and their development happens at what feels like the speed of light.

As the birth of the twins approaches, I am looking back and thinking more about Phoenix's birth and the emotional mess of her diagnosis. I am still hoping that these babies are born and come out totally typical, and that we don't have the same kind of experience where a perinatologist comes in and asks "What do out know about x,y,z" and then tells us what is wrong with our babies. I hope and pray that this doesn't happen, but as I know so well, nothing is guaranteed.

As for the twins, I am now 30 weeks and the twins are still growing well. I am starting to experience some swelling in my hands and feet and my blood pressure is rising, so this is something to keep an eye on. My appointments with my OB are being bumped to once a week to keep an eye on everything and if my pressure continues to be high the doctor will order home health nurses to start coming to see me and check on the babies. 

Also, at our quick u/s we determined that both babies are breech. So when I go in next week we are going to book a C section for the first week of Jan if I make it that long. I've been feeling torn about how to give birth, so in some ways I don't mind that the decision is out of my hands. 

That's it for today. 

Tuesday, 12 November 2013

29 week update

So I am 29 weeks pregnant and have about 7 weeks left to go before these babies are evicted. I just had another good news ultrasound with both babies weighing over 3 lbs each. At this point in the pregnancy the ultrasound tech is looking for the babies to be making practise breathing motions, which both were. They have lots of active movement, good tone and overall they look great. Baby A is footling breech, which confirmed for me that what feels like a baby kicking me in my cervix, is in fact a baby kicking me in my cervix. Baby B is head down, and like they frequently are, have their heads meeting in the middle.

I am the same size that I was when Phoenix was born, yet have 7 weeks left to go. Life is getting harder to manage. I wake up to use the bathroom every 2 hours or so, I can't breath due to pregnancy sinitus, and my hips hurt if I lie on the same side for two long.

And unfortunately, Phoenix is getting the crap end of the stick, because I am too tired to play with her or to find fun activities for her to do. Thank goodness for 2.5 hours of programming every week day morning in her pre-school. And thank goodness for the magic iPad which entertains her for hours without fail. I know this isn't fair to her and I am certainly not winning any mother of the year awards, so my project next week is to start looking for a developmental aid to come and work with her a few times a week. I think this will be especially helpful after the babies come so that she gets some special attention and fun things to do while we attend to newborns.

Wednesday, 2 October 2013

Pre-school update

The first month of pre-school flew by!  Husband went to the first family Friday and got so much positive feedback about Phoenix. She is following the routines well and is the most social kid in the class. Although the other kids speak more than her ie in sentences, she actually has the largest vocabulary in terms of the different words spoken. She also has the largest signing vocabulary in the class and busts out new signs every day to their surprise. She's doing great! She is weak in fine and gross motor skills (which we knew, thank you low tone and hyper flexibility) but is showing her strengths in so many different areas. I know she's a smart kid, it's just so nice for other people to recognize it too:)

23 weeks

23 Weeks

Life is starting to get a little bit harder these days. I am getting bigger, my energy is lower, my sleep is more broken and my blood pressure is doing wacky things. Babies still look good on the ultrasound and the fetal echo looked clear too. My cervix is still long and closed. It's all good news.

22 Weeks

I'm 22 weeks now and am starting to really feel pregnant. I feel the babies constantly and have to eat every 2-3 hours to keep up with their growing bodies. They both weigh about 1 lb now and continue to grow at identical rates. They are both falling nicely in the 50-75th percentile. All of this is excellent news.  At my bi-weekly u/s the tech now measures the length of my cervix, because a shortening cervix is a sign that labour may begin early. They like to see a cervical length of 2.2 cm or more: mine was 5 cm! As my OB said "You have enough cervix to share!"

We are two weeks away from viability with no signs that they feel like coming that early.

Monday, 2 September 2013

Preschool (My baby is growing up!)

This week marks a brand new adventure for Phoenix and our family. My baby is going to school (imagine a tiny tear drop running out of the side of my eye). Seriously, this is a big deal and a huge step towards her independence. It is so, so easy for me to still look at her as a baby. Especially because of her beautiful bald head and developmental delays. So there is a contrast there for me, that I am sending my baby to big girl school.

It is so odd to me that we have started talking to her about being a big girl, especially in the context of her siblings on the way. We know that after the babies are born it is going to be the 'twin show'. Which is in stark contrast to the last 3.5 years which have been the 'Phoenix show'. This kid has had a long time to get used to being the centre of attention, and boy are things going to change in that regards this winter.

So, she is becoming a big girl. And big girls get to do things that babies do not. Like go to school.

I chose a special ed preschool that is provided by our local school district. I suppose I could have pushed for an inclusive environment with an aide, but at this point it wasn't that important to me. I am happy that she gets a full time spec ed teacher, 3 aides, a consulting psychologist and an OT, PT and SLP who run groups with the 16 max kids in the class. It's a pretty good set up I think. I'm pretty sure that she will be the only kid with DS, which is ok. Just goes to show that lots of kids need extra support, not just those with extra chromosomes;)

And you know, it may be the only chance she gets to be the academic rockstar of the class. I'd like to give her that chance.

I'm happy to release the controls of her early education onto people who do this every day. I've taken her pretty far I think in terms of her early learning. And frankly, I'm tired. I know that has to do with being pregnant with twins, but it is a big relief to hand over the reigns to someone else and (hopefully) seem more progress. I feel like we have given her all we can, and now it is time to let the education system see what it can do.

Thursday, 29 August 2013

Happy Dance

My Harmony test came back today negative for all 3 trisomies. I am doing a happy dance. Please join me if you want!

Tuesday, 27 August 2013

What's there to worry about?

It's so funny the way our minds work. During my last pregnancy I was obsessed with researching birth defects. I looked at different trisomies, triploidy, polycycstic kidneys, Potters syndrome, Turners syndrome, dwarfism etc. Do you know that there are over 200 types of dwarfism, some of them fatal? All of these I had running through my head as I unknowingly carry my baby with Down syndrome.

This time, there are a whole different set of worries. Still birth. Pre-term labour. Early placental failure. Twin-to-twin-transfusion-syndrome (TTTS). Sigh. I never seem to let it go. The odds are very, very small that it will happen to me. Bust as you know, I hate playing the odds game. Because I always go back to the fact that I had 0.25% chance of having a baby with DS at 34.

With mo/di twins like I have, the risk of TTTS is very real. Basically what happens is that one twin starts receiving all the nutrients and fluid from the placenta, and the other starts to be denied nutrients. This causes one twin to become markedly smaller than the other, and can lead to death for both. It doesn't happen all that often (15-20%), but frequently enough that twins like mine are monitored frequently. I get an u/s every 2 weeks to see how the girls are growing and to look for TTTS. The good news is that if it is caught early and needs to be treated I get a free trip to Toronto to have the surgery performed. Apparently one of the hospitals in Toronto are experts in this surgery so everyone in Canada gets sent there. That would be ok, I could even squeeze in a visit with my Mom and a few friends if I was lucky.

Apparently, because my NT scan was so good (with both babies having identical NT measurements), my risk of TTTS is actually only 10%. Good news, but not a guarantee by any means.

Another risk with Mo/di twins is early placental failure. Basically, because both babies are drawing all their life sustaining nutrients from one placenta, it is more likely to give out early. This is why mo/di twins get delivered no later than 37 weeks. Because after that week the risk of still birth is higher than the risk of having babies born early.

The irony of all of this worrying is that so far everything about the babies is perfect. PERFECT. They measure exactly to dates. Both of them. There is no difference in size at all. They are active, and all body parts are accounted for. And then I go back to 0.25%. Over and over and over. 0.25%. There are just no guarantees.

Why can't I just let this go?

Monday, 26 August 2013

Anatomy scan (preparing for babies)

My 18 week anatomy scan is this morning. I set my alarm for 6:30 am so that I could be ready to leave to make my 8:00 am appointment at maternal fetal medicine. Not to worry, I was awake at 4:30 and couldn't make it back to sleep in time to bother. So here I am at 6:17 updating my blog. Such is life.

I feel like I am in limbo land land lately. I am obviously expecting a baby (measuring 22 weeks pregnant at 18 weeks), but trying not to get too indebted to the idea of having these babies before all the scans and tests look good and before 24 weeks (viability). It's hard. I found a great deal on a car seat this weekend (over 50% off!) so bought it. But not before I made sure I could return it unopened with the receipt if anything happened. I was browsing at Chapters yesterday and found some adorable toys for 75% off that I would have loved to buy for the babies. But I still feel like I can't let myself purchase anything that is just because they are coming, or to just celebrate their arrival. Because when it comes down to it, I am still not sure that we will be taking home babies at all.

Being a realist sucks. Knowing the odds sucks. Knowing that not everyone gets to bring a healthy baby home from their delivery sucks. And knowing that these things are even more likely with twins really sucks big hairy balls, excuse my language.

I get these glimpses of hope. Last night I mentioned to Husband that when the Harmony test comes back that I want to start getting the babies room ready. I have a beautiful shade of antique blue picked out that I am comfortable using if the babies are boys or girls. I happen to abhor pink rooms, so even with girls I am confident that we can make a light blue room feminine. I contacted my friend last night who offered me her crib that she is finished with now that she is done having kids. I found a good deal on a twin nursing pillow so bought it rather than spending twice the price later on. I am slowly, slowly, planning for babies who I don't even expect to bring home yet. I must be insane.

Late evening update: The scan went beautifully. All fingers, toes, limbs and organs were accounted for on both babies. And they were measuring perfectly to dates with no difference between the two - which means no twin-to-twin-transfusion-syndrome. It was very, very good news. We also found out that we are welcoming 2 more girls into our family. Phoenix will have two sisters to love and share her life with. I feel so hopeful.

Friday, 16 August 2013

You've come a long way baby

I was asked a while ago about one thing I would change if I could. I thought about it for a minute and replied I would really like it if my daughters hair would grow back and the alopecia would go away. That's a pretty reasonable thing to ask for right? It wasn't until about 10 days later that it struck me that in that instant of contemplating change, my mind didn't jump to Down syndrome. And in fact it took me a good long while before I had even realized it. You've come a long way baby.

Maybe it's because life has been beyond hectic lately. I've made it into the second trimester and the twins still look great! They are measuring identically at this point, which is excellent news, because if one gets significantly bigger, and the other smaller, we all start to worry.

We had house guests, and family and executed our wedding last weekend. I'm a Mrs.! I was most impressed that I fit into the dress I bought months before I got pregnant and didn't have to deal with nausea on my wedding day as it had miraculously ended 2 weeks earlier.

It's been a wonderful time in my life to share our love, and the blessing of our daughter, with our friends and family. Love, love, love. And two more loves on the way.

Saturday, 27 July 2013

Countdown to the wedding

So we are coming up to the final 2 weeks before our wedding and there is still much to be done.

I haven't bought the favours yet, the basement is still in a shambles while Mike organizes, purges and repacks our storage areas. We still need to buy wine and make sure there are enough wine glasses in the house. We haven't heard back from some of the invitees, so I have no idea about the final head count, only that it will be under 40.

My waistline is expanding and I am starving all the time. I had hoped that the babies would eat my excess fat, so this wouldn't be a problem, but no such luck. And I can't not eat because when I get hungry I get nauseous, and grumpy and panicky. That's never good. So I eat a whole lot of fruit, many small cheese sandwiches, yogurt, eggs. Pretty much anything other than meat which makes me want to hurl most of the time. Vegetables aren't that appetizing either, much to Mike's displeasure. His not so helpful suggestion towards most of my complaints is to tell me I am eating too much sugar, not enough nutritious vegetables and no protein. Massive sigh and eye roll. I can't control what looks appetizing and what makes me want to vomit. Sorry love, the twins are in control right now, me not so much.

And my allergies are out. of. control. Today that when I went to lie down for a nap I ended up having a massive coughing and wheezing fit so bad that I wondered if I would have to go to urgent care. As I was running out the door to drive to the pharmacy to see if there was something I could take, Mike helpfully suggests that if I went to the gym and worked out I might feel better. I could be dieing of an asthma attack, and he wants me to go to the gym. I didn't have the breath or energy to set him straight so I ran out to the pharmacy without arguing. The allergy meds have helped, as did a few puffs on the old inhaler I had, and I finally got my breathing under control.

2 weeks left. Oh my goodness. I hope we get everything done.

Wednesday, 24 July 2013

Phoenix update

I realise that I haven't actually written about Phoenix for a while, so I thought I would give you a quick update. Phoenix is becoming more and more 3 years old. By that I mean she is asserting her independence, becoming possessive of her belongings, becoming more wilful. All things you would expect of a 3 year old. She is the queen of diversion. I ask her to come to the table to eat and she jumps into her car and starts pretending to drive away. Or she goes to the couch and hides under the blanket or she goes to her reading tent and picks up a book.

We've had to finally pull out the ultimate threat when we sit her at the table and refuses to eat. Eat or the ipad goes away. And amazingly, it works! It is a beautiful threat, because she loves the ipad and we have fallen into the bad habit of letting her watch videos on it at the meal table because she will watch it and mindlessly eat. For most people this is a bad thing. Not for a kid with food issues. For a kid with food refusal tendencies, mindless eating is brilliant. It means that every day I get her to eat fruits and veggies. It feels like a giant victory. Until the time when we have to start weaning her off the ipad. That is not going to be pretty, let me tell you. For know it is fine. We finally have a kid that eats and we are going to bask in the glory of it as long as we can.

I sure hope it won't be a problem at preschool in September.

Tuesday, 16 July 2013

The NT scan

I had been extremely nervous leading up to my NT scan. This is the scan that looks at the fluid at the back of the babies necks and, matched with some blood work that is done a few days ahead, is combined to give you a risk ratio of your chances of having a baby with trisomy 21, 13 or 18. This is the scan where Phoenix came up high risk last time. It's a pretty important scan. And I was anxious. Like up half the night anxious worrying about what was going to happen.

Because as much as I love, love, love my daughter, and fully embrace her challenges, there is nothing I want less in this world than identical twin babies with DS. Sorry, I just don't. I want a different experience this time. I want to envision a different future. I want to just worry about the normal twin things. Like how long I can carry them. Or getting them to a good birth weight. Or trying to breast feed two babies who most likely will end up in the nicu. Or how to fit three car seats across the back of our Ford Focus wagon. That's enough to worry about, don't you think?

So I've been worrying. A lot. Obsessively. And then the day of the scan came. I let the tech know that I was apprehensive and she did a wonderful job of talking me through what she saw. We saw two beautifully formed babies. We saw arms and legs, and bladders. In fact, it wasn't that different from what I saw when I went for this scan with Phoenix. The only difference were the NT measurements. With Phoenix it was 2.1 (still well within normal). With these babies the NT was 1.5. They were excellent readings. And this time when I met with the nurse afterwards the results were very different from last time. Last time I walked in with a background risk of 1:400 and walked out with a risk of 1:17. This time I walked in with a risk of 1:72 and walked out with a risk of 1:1444. Much, much lower.

So while this initially gives me some relief, the reality is that I could still be the "1". One mom I know had a risk of 1:20,00. Another had a risk of 1:12,00. They were both "the 1". So what does it matter how low your risk is, when you keep on becoming the "1"? My risk of triplets from the particular fertility treatment we did - 1%. My risk of identical twins - about 1% too. And then there is my lost baby. My triplet. My third heart beat. I am sure we lost it due to a problem with chromosomes. Even the geneticist agreed that it was probably lost to "chromosomal rearrangement". I just keep on winning and winning. How very  Charley Sheen of me. So why should I trust that THIS time I am not going to be "the 1"?

For people who have walked this road, it can be terrifying. The uncertainty. The not knowing exactly what is going on chromosomally with their babies. And now there are blood tests you can take that look at the free cell DNA of the baby that floats around in the mothers blood. Except, if you have a baby that has passed, like a vanishing triplet, you can't take the test because it will be inaccurate. So I am still SOL, not knowing if these babies are chromosomally normal.

 It's just never simple.

The Blessing of Many

There is a reason why most women don't announce their pregnancies until after 12 weeks. It's because things can change quickly, and if you are going to experience pregnancy loss, this is the most common time for it to happen.

It was very exciting when we finally found out we were pregnant. It has taken over two years trying to conceive our second. It's been a long road with many disappointments.

So I was very anxious when I went for an early ultrasound a number of weeks ago. I was hoping to see one live baby. Just one. One would have been beautiful. What we found was very different.  We found a set of identical twins, and then a single baby. 3 heartbeats. 3 babies. Oh my goodness.

For some reason, I took the news very calmly. I had been secretly hoping for two because I thought this might be my last shot of having children. Husband was happy with just Phoenix, but I wanted her to have a sibling or two to grow up with. I had about a 20 minute wait after the tech was done while I waited for the doctor on site to review the pictures, so I called Husband. Husband was also very calm when I told him bout it. He was at home taking care of Phoenix, so I just went to the appointment on my own.

Of course, I went into research mode. The stats aren't wonderful for triplet pregnancies. There is a 25% loss rate for the entire pregnancy. 1 in 4. That sounds so high to me.

The doc and the tech weren't sure if baby number 3 was going to viable. There was a heartbeat, but it wasn't the same as the other two and the baby wasn't as developed as the twins. So we waited for two weeks and went back for another peak to see how they are all doing. And through my research I found that having a 'disappearing triplet' is quite common. Like 50% of triplet pregnancies common. So it wasn't a total shock that we ended up with 2 after all. Two is still fabulous, even though we would have gladly welcomed all three to the family.

Of course, the twins are high risk as well. They share a placenta (mo), but thankfully are in their own separate sacks (di). This type of twin set is referred to as mo/di. They are identical. Because I am carrying mo/di twins I get to see the high risk maternal fetal medicine clinic in my city. I'm psyched for my first appointment in three weeks. And I get ultrasounds every 2-3 weeks to check on the babies progress! I'm psyched for that too. I love seeing their growth and development and seeing them on the screen makes it all the more real.

That's it for now. I have more story to tell, but I'll save it for another day. Here is my beautiful baby A and baby B. In all their 12 week glory.

Wednesday, 29 May 2013

Getting in shape

This post has nothing to do with DS. It has to do with me and my desire to lose some weight, get back into some of my pre-Phoenix clothes (goodness knows I have enough of them just taking up space in the basement) and to increase my energy levels. The fact that Husband and I are formalizing our relationship in August by actually getting married (we are common-law now) is a pretty good motivator too.

So in Feb of this year we both joined a local gym. Husband has been much more dedicated than I. He ramped up his workouts immediately and bought a personal training package. He sees his trainer once a week now to tweak his fitness routine and change things up a bit. It has been a slower process for me. The first reason being that I typically hate going to the gym. I actually really dislike exercising period. Walking is good. I like walking. I used ot walk a lot when I had my dog for 10 years. We went on 2-3 walks a day. I was very fit at some points during this time. Sadly, Zeus passed away a few years ago and I have just not found the motivation to start a fitness routine since then. Especially since Phoenix came along there just always seemed like there was something more important to do than exercise.

Anyway, Husband has been a rock star about getting in shape. He's lost weight, lost inches, gained muscle and lowered his blood pressure. He's made some amazing changes to his health. For me, it has been slower. I started out using the cardio machines for 20 minutes at a time. That was it. After a few weeks I bumped it to 30 minutes. Now I regularly do 45-60 minutes on the elliptical at time. And I am trying for 4-5 days a week. I feel great. I have also increased the number of fruits and veggies, and decreased the amount of simple carbs I eat (ie bread, buns, scones muffins etc). I have only lost a few pounds so far, but I just feel better. My pants are a little looser, I stand a little straighter and I have more energy and endurance. At 11 pm last night I actually had to do relaxation exercises to help me sleep, because I was wide awake. This is good!

So, this is the start of my getting in shape journey. I am hoping to keep it up even after the motivation of my wedding has passed.

Wednesday, 22 May 2013

Staying motivated

I'm having a hard time staying motivated to create new flashcards for Phoenix to learn. She learned her last batch and I have been recycling old ones for a few days while I get off my butt to make some more. I've had the materials ready for over a week, but haven't gotten up the gusto to do them.

Finally today I made them. The last batch I just chose words from the 100 most common sight words. And while she learned them just fine, she wasn't as interested in them as when I chose words that she was saying frequently. So I changed tactics this time. For this batch of 20 I went back to words she is saying a lot: carrot, eat, drink, apple, shoes, play, toys etc. I also decided to include some of the two word phrases we have been working on, such as: my turn, love you, night night, your turn. I'm kind of excited to see how she reacts to them. When I put two foamies next to each other she won't read them out as a sentence. I wonder if putting the two words on the same foamy will help?

Wednesday, 15 May 2013

Growing like a weed

This weekend I have given myself the task of putting away all of Phoenix size 2 clothes and putting out the size 3 clothes. Her pants are too short ("Pretend they are capris" Husband helpfully suggests), her belly is hanging out of her shirts and her pyjamas are getting too small. My peanut, who is still not a great eater, seems to be growing like a weed.

I am constantly in awe of the perfection of Phoenix's body. She is long and lean. She has beautifully shaped arms and legs, and the cutest little bum. The ratio of her trunk to her limbs is balanced. Her head is even beautifully shaped. She is perfectly proportioned. All of this is possible, even with the presence of an extra chromosome. I am in awe that I created something so perfect, especially concerning how I feel about my own body. I am large and shapely, to be nice to myself. I have lumps and bumps in places I would prefer not to.  I have large bones and gigantic feet. I am not in any way perfectly proportioned. Yet I created a child who is.

So this weekend we are putting away the old, and taking out the new. The winter boots and snow suit are finally packed away, and the summer clothes and dresses are being busted out. Spring is here baby, and I have a little one growing like a weed!

Sunday, 12 May 2013

Not your average mother

Today is one of those days that makes one reflect upon their life. It is Mother's Day. And I got to spend mine exactly how I wanted. I had a great breakfast with Husband and Phoenix. We went on an epic walk to the duck pond. And we just hung out together. It was wonderful.

But when I step outside of myself, I realize that as normal as this looks, I am not your average mother.

That's because if I was like the between 67 to 90% of woman who get odds like mine on their prenatal testing, I wouldn't be a mother at all. Because it is around this percent of woman who decide that it is better to have no baby at all than it is to have one with Down syndrome. Which is ironic, because I used to think that given this situation, that is exactly what I would do.

Or course, if I had made that decision, I would never have known the depths to which my heart has grown. I would never have had the opportunity to raise this child with Husband, and to see his life transformed too. I would never have known how wrong my perceptions of Down syndrome were. Or that it is possible to be talented, and charming, and funny and capable and have Down syndrome. That none of these things are mutually exclusive.

And instead of celebrating the life I have created for myself, I would be mourning the loss of a child I would have given up in exchange for the hope of a better child, a child without disabilities, or challenges, a child without a lifetime of struggles.

But when I look back at my own life, it s amazing what I see. I see struggles, and challenges, and things I have had to overcome. Like my own perceptions of what qualifies as a happy and fulfilling life. Because I have a child with Down syndrome. And I have a happy and fulfilling life, for lots of reasons.

Your average mother would not squeal like a school girl about finding out that their child's language score fell in to the moderately delayed range.

You average mother would not be over the moon about the start of 2 word sentences at 3 years old.

Your average mother would not be secretly pleased that their 3 year old finally learned how to climb the change table on their own, or managed to pee in the potty once a day. However, I am not your average mother and Phoenix is not your average child.

Thursday, 9 May 2013

One of those days

I am having a day. One of those days. A day where the grumpiness I went to bed with followed me into the morning. It's a day.

But then I heard my little love muffin stirring. And I went into her room, and pulled the blinds open to reveal the sunlight of the day, and lay down next to her to get a snuggle. "Sleep" she tells me. So I close my eyes and pretend to sleep. "Wake up!" she tells me. So we sit up and get ready to start the day.

I was at the park many months ago and met a woman who is also a special needs momma. She was pushing her son in a swing next to me. He was about 2 years older than Phoenix and had a heartbreaking smile. And I noticed that his mom was signing with him too. He had a developmental delay, the cause of which the mom was still healing about.

There was a kinship there. An "I get it. I see you. I know what you are going through." The process of coming to terms with a child that is different than you had hoped for. And a celebration too, of our children's remarkable accomplishments.

I later found out that she is a talented photographer, and she recently offered to photograph Phoenix. Her FB page is here.   Our photo shoot was Sunday evening, and I am slowly getting the edited pics. And, looking at these stunning pictures of my daughter, my beautiful, beautiful child, is bringing me out of my funk.

Because how could I not find lightness and joy in this child?

Tuesday, 30 April 2013

Dreaming Big

Phoenix has been doing well lately. So well that I don't really think about her being delayed. I know she IS delayed, but usually I live in a little bubble of happiness about what an amazing little kid she is that her delays just fade into the background.

But the spark of intelligence in her face and in her eyes has started to push the parameters of what I had thought was possible for her in the future.

I've started to dream again. I've started to allow myself to think about a future where a trade or a career isn't off the table. Where Phoenix will move into an apartment as a young adult and cook her own meals, and clean and decorate her own place and go to school or her job like any other young person.

These are hard words to write because I have been so critical of other parents in the disability community making bold statements like "I expect my child to go to college" or "My child is going to own their own home". I still mostly think they are ridiculous. But I've started to dream anyway. For the record, I don't expect that Phoenix will go to university; I don't expect her to own her own home. But I am daring to dream that Phoenix will be able to have an average ability to learn, grow and develop. And that her inborn talents will allow her to achieve the independence that most young people attain. That her future will have options, and possibilities and that she, and I, can dream.

Now, I normally hate pictures where Phoenix has her tongue hanging out. It just screams "Down syndrome" to me. Yes, I appreciate the irony of what I've just written. However, in this pic Phoenix is purposely sticky out her tongue to be a cheeky little monkey. So I am posting it to show the world how cute my daughter with DS is. Even with her tongue stuck out.

Thursday, 25 April 2013

Preschool Open House

Yesterday we met Phoenix's preschool team. The school had an open house for the parents and kids who are planning to attend in the fall. I actually went to the open house last year, not knowing that Phoenix's birthday fell 9 days after  the cut off for registration. So I was able to ask many of my questions before hand and just listen to get to know the team. The teacher will have 2-3 aides in the classroom with a maximum of 15 children enrolled, making the ratio 3:1 students to staff. That's pretty good I think. Also the SLP. OT and PT work in the classroom 1.5 days a week. They do individual and small group instruction (all play based), and they teach the aides how to work with the kids in their absence. Awesome. There are also family days where the team meets the parents to show us how to work with our kids at home. Equally awesome. I'm psyched.

We brought Phoenix with us to the open house and she spent the time with one of the aides playing. They hit it off and Phoenix made herself at home in the classroom right away. This is great, because it tells me that she should have an easy time adapting to her new school. Her flexibility and sociability is a huge bonus for her in life. It allows her to navigate new situations with confidence and ease.

Now all we need to do is work on toilet training (insert grumpy face). Phoenix continues to sporadically tell us when she wants to go potty, but it is not consistent, and diapers are still the constant. The idea is to give it a good effort once my summer vacation starts, and I am able to spend all day with her trying.

Sunday, 21 April 2013

More Gross Motor play

We recently went to play gym after about an 8 week absence. We had bad weather and illness and travel and more illness before we were finally able to make it back for a visit. Which is a good thing because we pay by the month whether we use it or not. What I love about play gym is that Phoenix is now so comfortable there that that she confidently attempts the new structures. I try to arrive a little early to let her try out the apparatuses before the other kids arrive. Here she is on an incline mat. She did all the steps by herself without any assistance. Go Phoenix!

 Dancing with the hula hoop.  

Climbing the bridge

And this is parachute time. She knows now to move to the side of the mat, pick up the chute and start shaking.

That's it for now. Happy Sunday!

Thursday, 18 April 2013

More Sight Words

So I introduced about 40 sight words last week with our bathtub foam shapes. Many of the words I had introduced already in other ways (writing on her magnetic board etc). I am pleasantly surprised at her ability to learn most of them in a very short period of time. I'd say there are about 5 that she doesn't know and she is so open to reading them and playing with them at bath time.

So I made some more. this time I did a little bit of research and found the 100 most common sight words. Many of the words I had already chosen were on this list, so I have continued to follow it with adding 40 more words. I also have added 20  words that are part of Phoenix's common lexicon such as: cookie, home, milk, shirt, pants, clothes, coat, fish, turtle, cow, horse, sheep etc and words that I feel will benefit her transition to preschool in the fall such as: teacher and school.

I gave her the latter set of words last night and am so surprised at how quickly she learns them. There were at least 5 or 6 that she remembered after just one introduction of the word. And she is so open to many repetitions of words she didn't remember yet.

It gives me so much hope for the future that at 3 she already loves to learn! We are going to an open house next week for her preschool. I am so psyched to be able to meet her learning team and to see what types of things they are going to be teaching her.

Here she is practising her words:

And a cute photo.

Wednesday, 17 April 2013

Daily pic

My Mother was recently compaining, to anyone who would listen, how hard done she is because I never send her pictures of my daughter. She has a close friend whose DIL sends her a new pic of the grand kid everyday. And now my Mother doesn't understand why it is such a big deal to send her a daily picture too.

Sigh. Well, up until recently I was taking pictures with my camera with which I had to insert the data card into the computer and download new pics. We don't actually take that many pics of Phoenix, and it feels like a lot of effort to be downloading them every day just to send a pic to my Mother.

So my talented sister took a bunch of photos over our March break and she sends both of us one picture a day to ration them out. Thanks Sis!

Here is today's picture:

I will say that the nagging has worked. Now that I have an iPhone, it is much easier to email pics from my phone to share with my Mother. And there have been no complaints. She's able to keep up with the Jone's in terms of the Grandmother competitions. Who knew that the Mommy Wars wasn't the end of the competition?

Monday, 15 April 2013

Thursday, 11 April 2013

Sight words!

Now that Phoenix confidently knows her alphabet and numbers I really wanted to start teaching sight words. We have been doing a few sight words on her magnetic drawing board, but nothing too consistently.The only problem is that the favourite way to teach sight words in the DS community is through the use of flashcards. And it is a good method for kids who are willing. Individual word reading is a significant skill for kids with DS.

I introduced flash cards to Phoe about a year ago and it has been a huge failure. She hates them. She starts yelling "no,no,no" and pushes them away. Which is interesting since this kid LOVES learning. She just doesn't want to learn through the use of flash cards.

Ok. Regroup.

One of her favourite time to practise letters and numbers is bath time. We have foamy toys which are numbers and letters that stick to the side of the tub. She loves them, and loves identifying what each one is. I finally came up with the idea that I should look for foamy sight words - which I didn't find commercially, but found a variation on Pinterest that I could make myself. So off to the dollar store I went to find foamy cut outs and made my own sight words. It's been a huge hit! We've only been using them a few days, but already there are over 30 words that Phoenix knows by sight! I know she knows them because when I hold the word up for her she says it out loud. This is great not only for her pre-reading knowledge, but also for her continued progress in speech.

However, your child doesn't have to be speaking to teach them words. The other way to test their knowledge is to introduce a few words and then place 3-4 in from of the child and ask them to pick the word you are looking for. Easy peasy.

Last night, here are the words she could correctly identify the first time:

I'm excited for Phoenix who is embarking upon a lifelong journey of the love of words. But I am more excited for ME because I was able to work around her resistance to find an activity that would help her learn a really fundamental body of knowledge.

Tuesday, 19 March 2013

March Photo bomb

I haven't posted any pics in a while, so here are a few recent photos.

The first picture is a "Look! My kid is so gifted!" picture. I feel a bit weird saying that when she will likely be categorized as ID later in life...but whatever. I'm a proud momma. This is a pic she drew on her magnetic drawing board.

It's pretty good for a 3 year old with low muscle tone, if I do say so myself.

It was Miss Phoenix's birthday recently and she is now 3! I have a few pics of her in her party dress with some of her fabulous new gifts. The biggest present was from her extended family and a bright spanking new pink Mini Cooper. Can you think of anything more fabulous than that?

She got some new open the flap books and was already enthralled.

She also got a little backpack that she loves, loves, loves. Here it is:

That's it for now. Hopefully we will get some new photos done when we see my lovely and talented twin sister over the Easter holiday. Hint, hint.

Monday, 18 March 2013

The path to acceptance

As I've written about in the past, the path to acceptance was a pretty bumpy journey for me. It took me a long, long time to be ok with DS. I wasn't able to join any of the DS groups or functions becasue the 'reality' of older children and youth with DS was too much for me to handle. Part of what upset me about seeing these kids and adults was how low functioning some of them appeared to be. That it was obvious that the world was passing them by. That they weren't participating in it. That they didn't have relationships outside of their caregivers or relatives. And although lives have value in and of themselves, and that low functioning does not = low value - it is still upsetting picturing this as Phoenix's future.

As I have gotten to know Phoenix and seen her bright, inquisitive mind open and grow, I have realized that this is not her future. She is bright. She is funny. She can learn. She participates in her life. The world does not pass her by. She is engaging to others and brings them into her world.

Having realized that Phoenix's future is open and bright, I have a much easier time joining DS activities. We went to a lodge this weekend with our local DS community. And had a fabulous time, both as a family and as a community of parents whose children have this extra chromosome. It's nice to be part of a group of people who 'get it'. Who have similar experiences with the challenges and joys of raising children with DS. And who embrace our kids for who and what they are - instead of what they aren't.

One of the attendees was particularly interesting to observe. She was 25 years old and had DS. She was petite, well groomed and put together and wore fashionable clothes. She was really very pretty. She had poise. Poise! She attended with her brother and his family.  Husband spoke to the family on Saturday and asked if the brother was guardian. Nope. This woman lived with her mother, but was more than ready and able to live on her own. Her mother just wasn't ready to let her go yet. And she in no way was a burden to her brother or to her mother. She was a full participant in her life, her family and her community through her volunteer work. This is the future I see for Phoenix. This is why I have hope.

Monday, 11 March 2013


My concern this week has to do with the EI/therapy issue that many bloggers are talking about recently. Something that many parents with kids with DS are realizing is that therapy and early intervention is not a magic panacea that will make our kids"catch up" or be "normal".

My views on EI have changed greatly since Phoenix was born. At the beginning I took every available service offered to me. I felt like I needed to do this to give Phoenix the best possible start in life. And I don't think this is an unusual feeling to have. I think it is a very common to approach after our children our born - to mitigate the damage the extra chromosome does to the body. Our children have surgeries to fix hearts, to fix intestines and colons, to remove tonsils and adenoids, to put tubes in their ears. All in the hope to mitigate the effects of the extra chromosome. Why wouldn't we engage in EI to mitigate the developmental delays?

What I have discovered in the last 3 years is that nothing we do in EI mitigates the developmental delays. Nothing. Our children will be delayed, but they will get to each milestone in their own damn time. Some earlier, some later. And all the damn therapy in the world won't get them there sooner.

So why are some many parents killing themselves to fit hours and hours of therapy into their day?

I'm not sure. Mommy guilt? A subtle innuendo from moms whose children are not as delayed that this is the magic bullet to ensure milestone are being met? Pressure from EI organizations and therapists  themselves that children need to be constantly working on skills? I really don't know, but it disturbs me when I see parents of newborns asking about how they can sign their children up for expensive neurodevelopmental programs that have never been back up with any research.

I guess since backing away from therapies, and seeing Phoenix flourish regardless, that I have become a little disenfranchised with this push for EI. I have been very, very, grateful to have the DS team to go to to get tips about how to work with Phoenix or new strategies to try to improve her eating. This type of support has been wonderful so that I am not at home spinning my wheels. I find that all it requires of me is to be a bit more mindful during my interactions with Phoenix to try to extend her language or make an effort to show her how to do things for herself.

The Realities of DS

Phoenix recently came down with a cold/flu that hit her hard and lingered around. Two weeks later and she still has a runny nose . It's been a bad cold and flu  season, everywhere. It's even make the news. But this is the sickest that Phoenix has been in her life with high fevers on and off for 7 days. As a mom, this is really concerning. No one wants to see their baby be sick for this long.We made a trip to the family doctor, a trip to urgent care and then a trip to emerge to find out what the hell was going on.

It was a para influenza virus as it turns out. A bad one. The doctors have been seeing the fevers linger and the virus taking a long time to work it's way out of the kids systems.

But as a mom of a kid with DS I have a little bit more to worry about than other moms. Because in our population of kids Leukaemia is 10-20times more likely to develop and the median age of onset is 3-6. Phoenix turns 3 next week. And often the symptoms of leukaemia are similar to that of having a virus: fever, irritability, crying due to bone and muscle pain, and petechiae. Petechiae are small burst blood vessels that come to the top of the skin, and Phoenix had a small patch of this that appeared the week before her virus hit.

I'll admit it, I was worried. I brought her into emerg at the Children's Hospital because I wanted them to run a blood panel to check her blood for blasts. The blood work came back totally normal, so it was a bit of an overreaction on my part. It was great that for once my mommy gut was wrong.

We're still good, and Phoenix has bounced back beautifully. But a little nagging fear remains.

Thursday, 31 January 2013

What am I Celebrating this week?

What am I celebrating this week?

Peeing on the potty.
Snuggling on the couch while reading books and drinking milk.
Climbing up and down the stairs independently.
Learning the new routine at play gym.
Giving hugs and kisses.
Identifying the word "best" on the book "Red is Best".
Counting to 8 in order on her own.
Eating a whole hamburger.
Attempting to say her name.
Starting to regularly attempt sentences. They are not always intelligible, but it is the attempting of them that I am most proud of.

That's what I am celebrating. What about you?

Monday, 28 January 2013

Photo bomb

 Here's some photos from the last few months that I hadn't downloaded yet. And if anyone can tell me how to get the time stamp off of each picture on my lumix camera I'd be thrilled if you told me.

This is from Christmas time when my mom was visiting from Toronto. We made gingerbread cookies and decorated them together.

 Surprisingly, the icing was not done by Phoenix. 

An artist I am not.

And a few from Gymboree

Potty Training - Day 1

I'd say that the first day of potty training was a total success! We got 5 pees on the potty and Phoenix knows what we want her to do when we sit her on the toilet. The time where she sits and fiddles around before peeing has dramatically reduced from about 15 minutes to 1-2 minutes. This tells me that 1. She has figured out that she is supposed to pee when she sits on the potty and that 2. She is gaining better control of using her muscles. Both of these accomplishments are really good news in the potty training process!

I have read a lot the the low muscle tone can really delay potty training in kids with DS. Having low tone can mean that the way that our kids feel their muscles can be reduced. Phoenix is now at the upper end of the age range for potty training of typical kids. So the fact that she is showing interest and some level of control is very, very good news.

Will she be potty trained for when she goes to preschool in the fall? Who knows? But 5 pees in the potty is something to celebrate!

Friday, 25 January 2013

Potty training

We've been introducing the idea of potty training for some time now. Phoenix has been watching the Potty Time dvd since she turned two and we bought a potty insert shortly thereafter. She can say potty, she can sign potty, and in general she feel really positive about the whole potty experience. We started a routine where as we got ready for bath time every night Phoenix sat on the potty. The only mistake about this is that now Phoenix believes that potty times happens butt naked. Oops. We'll chalk that one up to first time parenting missteps.

She's gone through phases where she liked to sit on the potty for a while, where she wanted to get on and then off and now where she sits on the potty until she pees or poops. It's been a progression. A process. A learning curve. I finally feel that we might be at a place where we could make a commitment to really attempt potty training. Her day home provider let me know that she has been expressing interest while there and has peed on the potty a number of times in the past week.

So last night we bought our first box of pull ups. I feel like these will be a good transition for Phoenix where she can practise (with help) pulling her pants up and down while we take her to the potty each hour. We are going to keep it really positive (we clap and cheer when she successfully uses the potty) and see if she will eventually start initiating (requesting) trips to the bathroom on he own. Obviously we are going to be initiating first but the idea is for her to become more aware of what is happening with her body.

I had originally planned to initiate potty training this summer, but since Phoenix has been using the potty successfully before bath time, I can't see the harm in trying now while she is showing interest. Strike while the iron is hot and all that.

By the way, Sunday is the day we are going to start. We have nothing to do that day so we have the time to commit to this enterprise. I'll let you know how it goes.

Wednesday, 23 January 2013

DS catch phrases

I hate overused phrases. I hate them. When I hear them, they make me cringe. One of my 'favorite' examples is "If I can help/save just ONE person from (insert grievous experience here) it will all have been worth it" Puke, gag, cough, vomit. It is just so...trite. And self serving. And used a million times. Can't people come up with something better than this? Anything?

Down Syndrome catch phrases drive me equally as crazy. "More alike than different" "My child isn't defined by DS" "My child is a person first". I cannot even tell you have many times I have heard or read these phrases in the past 3 years. I'm sure they aren't as obvious or annoying to those outside the DS community, but to me they are like nails on a chalkboard. "My child is a person first" is the worst. Um, of course they are a person. They are a very small person with a unique genetic makeup. Can anyone honestly tell me that they think that our kids are perceived as anything but a human being?

And with a whole community of moms and parents who blog and write about our experiences with DS, can't we come up with anything more original? Or that even makes sense?

"More alike than different". Really? Do typical kids have a team of professionals who oversee their care? How many typical parents can claim to consult with OT's. PT's, SLP's, EI, a pediatrician, an optimologist, an audiologist and a family doctor? This year we have also seen a cardiologist, an ENT and a sleep clinic. And my daughter is healthy! We just monitor her progress! How exactly is this more alike?

Why can't we just be honest? Our lives with our kids are more complicated. It's not bad. It's not unmanageable. But it is different than raising typical children. It is. I think we come off as disingenuous when we claim otherwise. And it is a criticism of our community that has merit. Because when we claim that it is just like raising typical kids people think we are lying or minimising the struggles that our children will have in life.

It feels normal to us, because we have adapted to our new normal. But it is not alike. And I for one am not going to claim it is.

Here's an idea. Lets come up with new slogans and descriptions of our kids. Here's one I thought of yesterday: "Down syndrome: as individual as you or me". How about "Down syndrome: see the ability".  Phrases and descriptions like this are honest, authentic and more representative of the reality of Down syndrome today. It doesn't minimise any of our kids struggles and it doesn't marginalize them or set them apart.

Oh, and if anyone wants to pass these phrases on to a National DS group for marketing purposes, please do, but I'd like credit please. And royalties.

Tuesday, 22 January 2013


I read another moms blog today that made me sad. The entire post was about grieving for the mom she could have been if her child was born without challenges/disabilities. Her child was 5. I felt sad because I can't imagine how it is to spend 5 years wondering what could-have-been and mourning the child I didn't get. 5 years. Wow.

I frequently think back to the first year of Phoenix's life and the heart-wrenching grief I experienced. I wonder if it was so difficult because of how fully I embraced the sadness. It was difficult for me to focus on much else and in the end I needed to see a counsellor to move out of it. But when I had thought every thought about her future, and felt every emotion, and processed what it all meant to me, I was done. It was gone. I could move forward free of the what-if's and what-should-have-beens. Because these have to be the most pointless, self-defeating thoughts that we, as mothers of children with disabilities, can have. These thoughts are toxic, and soul damaging and they keep us from fully embracing the child that we have been given.

I also read this quote from another mom who has two children with DS. "Down syndrome is not bad at all. It’s not ideal, and most of the time it’s unexpected and unwanted. But it brings many good things for us." This is my experience of Down syndrome. It's not ideal. It was very, very, unwanted. But it has brought me and Husband more happiness and joy then we could ever have imagined.

Every single day I look at the wonder that is my child and feel grateful for her existence. I love her and embrace her fully. Her challenges, her delays, her strengths and her quirky little personality. I embrace her. There are no could-have-beens or what-ifs. There is only living in the moment of life with an almost-3 year old who drives me nuts and fills me to the brim with happiness, often within moments of each other.

I feel equally grateful that I have been able to leave the could-have-beens in the past, where they belong. It has allowed me to enjoy and fully appreciate the experience of raising Phoenix. I hope that other mom gets there too. It's a beautiful place to live.

Monday, 21 January 2013

Big Strides

I'm not sure if I just haven't been noticing the changes, but Phoenix seems to be making some really big strides lately. She has finally, after 6 months of work, figured out that sitting on the potty means we want her to pee. She loves everything else about potty time and has it down pat. The sitting, the throwing toilet paper in, the flushing and the washing hands. Everything except the peeing. But for the last week every time she has sat on the potty she has refused to get off until she pees. It often means sitting and waiting for 20 minutes or so until the feeling comes on, but she has been doing it! It makes  me feel really optimistic about trying to fully potty train this summer. The summer time is a good time for us to potty train because I'll be off work and i can really take the time to take her to the potty every hour or so. Of course, she can't yet pull her own pants up and down yet, but one step at a time, right?

The other big leap is in language. I am noticing more and more that Phoenix is putting two words together. And the more I notice, the more I am consistent with prompting her to expand her expressive language when she falls back to one word requests or sentences. I feel like we are really working as a team to help build her language skills. To use a very overused term, it feel like we have synergy. It makes me feel really warm and fuzzy inside.

Of course there are other areas which are not progressing at all. Eating for instance. Getting this child to eat fruits and veggies is really hard work. One of my recent shining examples of parenting involved Phoenix crying and me shoving a piece of orange in her mouth while exclaiming "It's not poison! It's just fruit!". Sigh. Not my finest moment, I'll give you that.

Big strides indeed.

Saturday, 19 January 2013


Is it obnoxious to brag about your kids accomplishments? Am I that mom, who talks about how great their kid is and only serves to piss off those around her who get tired of hearing how wonderful Phoenix is?

I don't know, that's why I'm asking. I talk to moms of typical kids pretty openly about how great Phoenix is developing. They seem to appreciate the updates and obvious pride I have for her. But with fellow DS parents I find I try to hold back a bit, at least in person. I don't want anyone to think that our children's development is a competition, because it is not. The fact that she is progressing well doesn't imply anything other than she is progressing well. I don't work harder than any of the other mom's I know to help my kid progress. We all work hard to help our kids and they all progress at their own rate. I think all our kids have bright futures. But I can't help but wonder if it pisses them off anyway.

Phoenix had a great assessment today. We went to our child development centre and met with the SLP first and then the PT. The SLP performed a standardized test on Phoe to measure her speech and language ability and then charted her results into percentiles. The results were amazing. Phoe falls at the 80th percentile for speech language, which is just under the normal range for her age group. So this is a mild/moderate delay. And yes, this is me jumping up and down with excitement that my child has a mild/moderate delay. Because you know what? Most children with DS have severe language delays early on. Language frequently takes much longer to emerge and progress in our kids. So the fact that she scored as high as she did is phenomenal.

But, we needed the PT assessment to come out lower in order for Phoenix to qualify for her preschool funding. To receive this funding children must have a severe delay in one area or mild/moderate delays in several areas.

Her PT assessment went well but she still only scored in the 2nd percentile, mainly because she can't run or jump. Surprisingly, this is considered moderate as well. Which makes me wonder, if  98 out of 100 children score higher than Phoenix on this test and this is considered a moderate delay, exactly how flipping delayed do you have to be to be considered severe?

So Phoenix has several moderate delays. That's wicked. And I am not being sarcastic. Because I know she is delayed. No one needs to tell me this. I can see with my own eyes that she does not have the same skills as the other kids at play gym. And she doesn't talk as well as they do. But she is trying, and learning and growing and having fun. And her delays are not considered severe, although I would love her just the same if they were.

So today I am celebrating. I celebrate her strengths, her weaknesses, and her presence in our family. Life is good. And if that is obnoxious, I don't care one little bit.

Thursday, 17 January 2013

January Update

I know it's been a while since I've written and updated, but life happens, and I get busy, and there is a busy, lovely, and demanding almost-3 year old who takes up much of my free time.

We are getting ready for Phoenix's next transition in life - beginning preschool! Her assessment for funding is happening this week. We meet with the SLP and PT to do some kind of assessment and to show off her rocking skills.

Her speech is really plugging along. She is getting better with putting two word sentences together such as "help please" or "more please". What is exciting about this is what these improvements imply. I have read that children need to have a vocabulary of over 200 words to start putting together two word sentences. I know Phoenix's vocabulary is good, but I am thrilled that it is this good.

She is also getting better about enunciating two syllable words. She still consistently says the second/last syllable of longer words instead of pronouncing the the entire word, but from time to time she says a two syllable word very clearly.

We have been doing a lot of counting recently. We consistently count the stairs every time we walk up and down. Phoenix can now consistently count independently from 1-10 with very few errors - she frequently misses 9, but we are working on it. Sometimes I sign along with her counting as a visual cue, but not always.

Phoenix is also getting better with her pretend play. She likes to go to her kitchen set and pretend to wash her hands and drink from the cups. She likes to go to her bed and pretend to go to sleep. She also likes to throw her books down the stairs and dump out her blocks.

She's doing great, but she is still a 2 year old.