Monthly Archives: July 2012

One more long commute

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We are celebrating around our house this week. We’re not celebrating a special birthday or holiday, but a change in our routine. A really, really good change.

Starting this Wednesday, Madeleine is starting at a new daycare that’s five minutes from our house. No more long commute for Maddy, and no more long commute for Daddy. Maddy still has one more to go on Tuesday, but the end is in sight.

In true Maddy styles, she didn’t want to let Daddy off too easy. She went out with a bang last Thursday when she pulled a cousin Logan – she cried so hard on the way home she threw up. It was truly a special moment. When they arrived home, Madeleine’s little face was swollen from all of her crying. Poor little bug. It took us an hour and a bit to calm her down enough to eat dinner.

We’re a tad bit nervous about the transition, as she’s doing so well at her current daycare (and they take such good care of her). But, we figure she’ll transition into her new place with time, and it’s so much better for her to not have to suffer through the long commute with her vestibular issues.

I have so much other news to share with you about Maddy’s past week and a half. Since cutting out wheat, she is so, so happy. I mean, she still has typical baby crying and the like, but it’s all typical. Her loose stools are a thing of the past, and we no longer see all of that undigested food. She’s even started sleeping through the night, until about 6 or 6:30 in the morning!! Eric and I are so happy that we now remember what it’s like to get a full nights sleep on a regular basis.

She’s also become very, very chatty. It is a joy to see as she was falling a bit behind with some of her speech and language milestones. She giggles and smiles and plays again. She’s even started getting into things. We have never really baby-proofed the house, because Maddy never did anything. But, now that she’s feeling good, she’s walking more, playing independently, and opening drawers and cupboards. Horrah!

Another change that has made our life a lot easier, is now she’s letting us use our therapy techniques to address her sensory issues. For awhile, she would not let us do anything with her. But, with a settled tummy, it has become an easy part of the day.

And, finally, maybe the best news I have: she has started eating again. In the short time since we’ve cut wheat out, she’s already gained a few ounces (the first weight she’s gained in almost four and a half months). We’re hopeful that she will continue to gain weight, and her fall off of the growth chart will no longer be a concern.

We finally have the little boo we saw a glimpse of post-therapy-pre-wheat introduction. It took us a long time to even recognize the decline, as it was so gradual (and a fall into her pre-therapy ways that we were so used to). We’re so lucky that we were able to figure this out, and we hope these positive changes are around to stay!

I hope everyone else is enjoying their weekend as much as we are!

!yadhtrib yppah

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Remember way back when I was so excited to receive this fabric in the mail? I made my second Happy Birthday banner out of it.

When we hung it up for Madeleine’s first birthday, I thought it was just perfect.

It wasn’t until days later, when I was hanging out with boo-boo in the sandbox that I happened to notice something was off about it.

I laughed, and laughed, and laughed. Clearly a mistake that is so true to me, nothing can be done but laugh… really hard. Look carefully through the mosquito net…

Note to self – must reverse letters for double-sided banners.

Oh, what a difference a week makes

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Last weekend was a terribly low, emotionally draining, frustrating, and saddening few days. I was feeling at my wits’ end.

Today was the easiest day we’ve ever had with Maddy. No hyperbole.

What has happened in between?

It has been exactly one week since we cut out gluten from Maddy’s diet. As I mentioned before, this meant that most of what Maddy would eat, and what we’d spent three months working on getting her to eat, was suddenly gone from her diet. For three days all she ate was fruit, granola bars, and goat milk. She was miserably hungry, but refused to eat. She was going to bed signing ‘eat’, and signing ‘more’ while crying, but there was nothing we could give her that she would accept that would fill her little tummy up.

Despite being miserably hungry, her poopy diapers became solid again (she previously had been passing completely undigested food two hours after consuming it, up to eight times a day). This was our first positive sign that cutting out gluten might be helping.

Jump forward several days, and we have a little girl who is trying foods we have never seen her try before. She not only put pork, beef, tuna, and chicken in her mouth, she swallowed them, and went back for more! She also tried tabouleh, peas, carrots, red pepper, and potatoes. This is our second positive sign that she might have had an upset stomach for a long while now.

Every day this week seemed to get a little bit better. She was still crying a lot, but her moments of happiness seemed to be increasing. She started showing independence again, not needing to be attached to us. She started wanting to walk instead of always wanting to be carried. In fact, she walks now more than she crawls, and she’s gotten to that stage other parents have told us about (the I-want-to-walk-everywhere-and-will-throw-a-fit-if-you-pick-me-up stage). A woman approached us today in a coffee shop, asking how old Maddy was, and then commented on how she was such a, “good walker for her age”. Rewind to last weekend when she would barely even bear weight on her legs. Whose kid is this?

Her sleeping hasn’t improved substantially, she’s still a wake-up-at-4:30am kinda gal. But, she is sometimes able to cry herself back to sleep for another hour or so. Let me tell you, that extra hour makes a world of a difference (and I don’t mean for Madeleine, I mean for us!). What has changed substantially is the way Maddy has been waking up. Three times in a row now (knock on wood), she has woken up saying, “Uh oh” while looking through her crib rungs at her soothers on the floor.  Never, in her little life, has she woken up so pleasantly three times in a row. Most of our days start with blood curdling screaming. Most naps end the same way, not to mention that her transition from sleep to awake often takes 45 minutes. Today? Madeleine woke from each nap happy, chatty, and she transitioned seamlessly. How have we interpreted this? It’s a lot more pleasant waking up when you’re not waking up to an upset stomach.

All this being said, Maddy will be having an abdominal ultrasound, as well as an appointment with a pediatric GI specialist to rule out (or possibly diagnose) any issues other than a simple food intolerance. Given the family history, and Maddy’s uncanny Celiac-like symptoms, we’re placing bets on Celiac disease… but we’ll just have to wait to see if we’re right.

The upset stomach/food intolerance/gluten removal is just one part of this story. The other part of the story is that Maddy has SPD. It’s really hard to meet her sensory needs when she’s already miserable from an upset stomach. She won’t let us use our OT techniques to navigate through the day. Combine the two together and it’s a big tangled mess of baby gone wild.

Today Maddy was happy. She did not seem at all like her stomach was bothering her. Her normal protruding, and bloated tummy was flattened. She was happy, and so we were able to do things. She played while I swept the floor (and let me tell you, I think this is only the second, maybe third time she has let me do this). She danced outside to music while she watched Daddy get our bikes prepped for our first ride of the season. She even let us put her helmet on her:

We met up with her Uncle Scotty, tucked her into her new bike trailer, and went for a ride around Hamilton Bay. We weren’t sure with Maddy’s vestibular issues how this would go down. She was either going to love it or hate it. What went down was fascinating. In retrospect, we wish we had video taped a bit of it. While we were biking, Maddy entered a catatonic state for 10 kms. She lowered her head a bit, lifted her arms (the way you raise your arms, parallel to the ground in front of you, when you lose your balance and think you might fall), and didn’t move a muscle. She was completely non-responsive to our voices, her name, and even our touch.

When we stopped moving, we took her out of the trailer and sat her on the ground.

She was still completely unresponsive, but now her body was entirely limp. If you picked up her arm and let go, it would flop back down without any resistance. She sat like this for another ten minutes or so. Eventually she started noticing her environment, she stood up, pointed, and called a goose a puppy.

This reaction to movement was not a shock to us. We have seen it many times in her therapy sessions, but I think the longest we’ve seen is a few minutes. As one of my facebook friends succinctly put it, “Her little brain is rewiring itself.” Now, just to give you an idea, it is normal for all children to have these frozen moments when their body registers a new motion (check out the kids at the park the next time you’re there). What distinguishes a child with SPD from a typically developing child is the length it takes for them to register the motion. Today’s bike ride was one for the books: 10km long bike ride, and post-10 minute rest in order to register the motion.

While we were waiting for what we were referring to as our “strung out” babe to come to, we discussed how it would either be meltdown central, or baby bliss depending on whether it was over stimulating, or just right stimulation for Maddy. Wouldn’t you know, baby was blissed out the entire evening.

Today is the first day Maddy has seemed happy from start to finish. I mean, she’s still a 13 month old and she fussed and cried a bit, but she fussed and cried about completely typical 13 month old things, like being put in her car seat, or picked up when she wanted to walk, or when we took away that pebble she was trying to eat.

I have never had such an enjoyable, pleasant day, end-to-end with our little boo-boo. We really think we’ve hit on something. We think that the combination of gluten and SPD is perhaps the mixture that was so confusing and difficult for us to figure out. Only time will tell, but if this week means anything, we’re definitely on the right track!

What does it feel like to be Maddy’s mama?

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I’ve had a very down few days. After cutting wheat out of Maddy’s diet, she has only eaten fruit and granola bars (maybe a total of 300-400 calories of food each day). She has cried and signed for food all day long, but spit out everything we tried to give her. Two nights in a row I’ve put her to bed crying while she signs for food. It just breaks my heart knowing that she’s sad and hungry, but not being able to give her the feeling of fullness. My saving grace is that I’m still nursing her, and so I’ve gone from 2-3 nursing sessions a day to 5-6 to help compensate, and her goat milk intake has increased substantially.

This new hurdle has brought back some of my early feelings, but it is also bringing up some new ones. Last night I sobbed as I read an article Eric found online – you can read it here. For the last few days I’ve felt like I’ve been trapped in a bad dream – a dream where nothing I do can help to make Maddy a healthy and happy baby for longer than a month or so. I feel like I’m perceived as “the crazy mom” who is dreaming up new issues for Maddy to have, out of anxiety or first time mothering. I feel as though my search for an answer continually brings up new issues or potential diagnoses, and people just don’t believe that Maddy can have that much going on (and in fact, I feel often that people think she’s completely typical, since her issues cannot be seen on the outside). If I hear, “my kid does that too” one more time, I’ll scream. Why is it that other parents feel the need to impress upon me that Maddy is no different or no more difficult than theirs?

But, the thing is, I know I am not dreaming these up…. and her issues are all interrelated. I know Maddy, better than anyone else knows Maddy (okay, Eric runs a very close second… and only because he didn’t get all that special at-home time I did during my maternity leave). So why does it bother me so much what other people think?

My low point of the weekend was celebrating the first birthday of our good friend’s little guy. I was so happy to be there and share that special moment in his life, but it was so hard, so very hard, to watch him be happy. He played, ate, giggled, and was happily held by people other than his two parents. In particular, it was a stark contrast to Miss Maddykins first birthday celebration.

Maddy spent the majority of her buddy’s party in a grumpy, bear-like state. She sat and whined by herself. Did not engage at all with the other kids, except for a few short bursts. She scowled all day long. The only way we could keep her happy, was by holding her in the exact way she wanted to be held. She didn’t eat… except for 6 raspberries and a few bites of a granola bar.

While we were at the party, people commented that Maddy seemed happy and seemed fine. It’s so interesting to me that people saw her that way. Maybe it’s because I know what Maddy looks like happy, or because I know exactly how to hold her to make her appear happy, but she was not happy. Not by any stretch of the imagination. When Maddy is happy, she leaves our side, she doesn’t need constant comfort from us. She explores and plays, and is quite interested in motoring around. She’s vocal, very vocal. She smiles and giggles. She doesn’t whine and cry and immediately want to be held when she sees me.

On the one hand, I’m so happy to see the other babies in our life that we love thrive. We love to watch them smile, explore, and play. But, it always draws up a mixed bag of emotions in me. It makes me question what more I could do to help Maddy feel that way. It makes me wonder if I have caused some of this (even though the network of professionals that surround us are constantly reminding us that this is who Maddy is, not who we’ve made her). In fact, the amazing professionals we see on a regular basis frequently compliment Eric and I on our creative solutions, on our flexibility and patience, and our willingness to put Maddy first. Why is it so hard in tough moments to remember those things?

I’m constantly reminding myself that everyone has their own battles to fight, and this just happens to be ours. But, I can’t help but wonder why we have to experience this? What in the world is this supposed to teach us? I thought we had learned a lot of tough lessons this year, so why do we need to learn more? The continued struggles have me really questioning if I will be able to do this again. I don’t know if I’m going to be able to survive another baby if it is going to look and feel like this.

So what does it feel like to be Maddy’s mommy? Painful, rewarding, scary, hopeful, draining, tiring, exhausting, amazing, confusing, frustrating, angry, unfair, incredible, challenging, and sometimes even fun.

Now, I need to leave on a positive note, so I’ll share one of the blessings this experience has given us: the very apparent, strong, and supportive network we have surrounding us. I have so many people to talk to, that I never feel like I’m stewing over these feelings. So many people not only listen to me, but hear what I’m saying.

I had a really nice conversation last night with an old roommate of mine. Her (and her hubby’s) struggles happen to be difficulty conceiving. We’ve talked about our issues before – surprisingly we’re able to unload on one another despite the fact that I’m telling her how hard it is being Maddy’s mommy and she’s telling me how badly she wants to be a mommy (and I know that one day she is going to be one truly blessed and amazing mommy, no matter what shape it takes). I’m so thankful that she’s able to understand and be so supportive when what I’m saying is probably the last thing she wants to hear. I’m glad she’s able to understand that though our struggles are different, they’re both painful. Thank you – you know who you are!

Ye Olde Fabric Shoppe

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There are so many things I want to learn in my life. Eric always laughs at me because once a week I come up with another career I think I’d like to try out (nurse, midwife, occupational therapist, physiotherapist, osteopath, psychologist, food scientist, dietician, GIS specialist… just to name a few). Don’t get me wrong, I love the job I have, but wouldn’t it be fun to get to try all sorts of careers?? In my current position, I spend a lot of time listening to others talk about their work experiences, and guaranteed, after every meeting I decide that I would like to try their job out some time.

This spills into my hobby list too. I’ve always wanted to learn to play the piano, learn more about photography, and take pottery, quilting, and (more) ballroom dancing lessons. I want to learn how to cook different kinds of food, garden better, and I always want to try out the newest fitness crazes (you know, pilates, hot yoga, zumba, drum fit – this is a total Baynton trait). I just don’t have enough time in a day to learn it all! Maybe that’s what retirement is for 😉

As you know, I started learning to knit when I was 15 or 16, and I’m learning to sew, so those can both be crossed off of my list. I’m starting to play a bit with crochet, but again, the time thing is just getting in my way.

Back in May, when Eric was taking his paternity leave, I decided I was going to try my hand at a very basic quilting project. Of course, I haven’t had time to start it yet, but I have my materials ready to go. We made a quick trip down to Ye Olde Fabric Shoppe in Stratford. I just love going into fabric stores and spending hours (yes, if Maddy will let me, I will stay for hours) exploring all of the different fabrics. I usually don’t come home with anything, but the visit itself is enough to satisfy my fabric obsession.

I had a great time at this place. It’s a quaint little quilting store full of friendly people. I chatted for a bit with an older woman who has been quilting for years, and she gave me some tips for my first project. I decided to pick up a pre-packaged project to make it easy on me – a table runner.

Best part of the trip? When I went to pay, they told me that I also got a free pattern (Friday and Saturday special).

Think I’ll just hang on to this bad boy until I’m ready to use it!

Reaching milestones!

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Ah, finally after a month of sickness in our home, we are almost clear. Just waiting for Maddy to get rid of her persistent cough and runny nose. Things have been very hectic trying to balance everything while we were all sick. Our house became a disaster (and frankly, still is despite hours of cleaning), and I fell behind in all sorts of work-related tasks. We’re just starting to get things together again.

We had an OT appointment yesterday (have I mentioned that we’re down to going once a month?). It’s amazing that Maddy has progressed enough to only have monthly appointments, but I can’t help but feel a little sad that she’s plateaued and it’s just a waiting game for the time being.

Right now we are trying to battle a few things:

1) Car rides. Unfortunately, the fact that Maddy can scream in the car for hours on end is related to her vestibular issues, and at this point there isn’t much we can do. We try rocking her and giving proprioceptive feedback before car rides, we place a heavy toy on her lap, we play soothing music, we bought a cheap tablet to offer visual distraction… none of it has been a magical key though. I think that daddy wants this one sorted out the most given that he commutes with her to daycare three days a week (1 hour each way). Fingers crossed we find something that works!

2) Bath time. Remember the little girl who loved the tub? For the last couple of weeks she hates it. We made the mistake of putting her in bubble bath for her one year photo shoot. At first we let her explore the bubbles and she seemed okay with them, so into the tub she went.

She totally wigged out having the bubbles on her skin. Whoops, mommy and daddy fail.

Our OTs explained to us how the littlest things (okay, apparently not so little for Maddy as you can see), can cause impact for a long time. Since these pictures were taken, Maddy has screamed through every bath. We are now going to bathe her in a new bucket, to try to disassociate from the tub. The next step will be to put the bucket in the tub, and finally, we’ll hopefully get a happy Madeleine back in our tub. Until then, we just need to be patient while she learns that we won’t put her in bubbles again.

3) Transition from sleep to awake. Maddy is having a tough time transitioning from being asleep to being awake. A really tough time. When my mom babysat, it took her 2 hours to calm Maddy post-nap. On average, it probably takes me 45 minutes. When she wakes at 5:20am (which is her normal wake-up time) it takes her until about 8am to become regulated. We have tried soothing music. Next on our list is to find some sort of twinkly lights that she can focus on when she wakes up. Our ultimate goal is to have a very relaxing and soothing environment for her to wake up in to help her make the transition.

4) Eating. I’ve posted before about eating (here and here). Since those posts, meal time has become so much easier. We have made such incredible progress in this department. We spent five minutes telling our OTs how amazing Maddy was doing with feeding, going on and on about her progress: she’ll sit in the high chair to eat, she doesn’t cry as often during feeding time, if she doesn’t like something it doesn’t cause a meltdown (though, it does still cause her to refuse any other food after that time), and she is eating table foods now.

I couldn’t help but laugh out loud when one of the OTs said, “That’s great! So how many foods would you say she’s eating now?” and Eric responded with, “20 or 25!”. It still makes me laugh typing this. We’re so impressed and proud of Maddy for her progress (and 25 foods from 2 foods in 3 months is fantastic), but never before would I have thought that a one year old eating 25 food items is impressive. Our OT reiterated to us that it is great progress, but that obviously, we still have some work to do.

Our next step is to do some food chaining. Basically, we pick a food we’d like Maddy to be eating – we picked zucchini because we grow it in our garden, and, to date, there isn’t a single vegetable she will eat. We also figure from zucchini we can move to eggplant because of their similar textures (and we also conveniently grow eggplant). Our OTs will create a chain, with multiple steps, say six, to lead up to Maddy eating zucchini. You start with a somewhat similar food, and branch from there. We’re going to use avocado as our starting point, since zucchini is green and soft, like avocado.

We’re trying to pick another food item to chain to, but we’re having a hard time because Maddy’s current food preferences are so limited. We have nothing that’s orange/red to lead up to carrots or red pepper, for example. Our OTs are thinking about how we can get there.

Despite the fact that we’re still working on all of those things, things are going really, really well. Maddy has finally started interacting with strangers. My heart wanted to burst this week when for the first time I saw her smiling, giggling, and waving at some kids while we ate dinner at a restaurant. Usually people try to interact with her and she gives them nothing. Nada. Just a blank stare that says, “I am so unimpressed with you”. We took her to the beach yesterday afternoon, and every time someone walked past her she was smiling and waving. It was so amazing to watch.

Maddy also has four words now: bye-bye, uh-oh, puppy, and baby!

We also had an incredible first yesterday at OT. At the very end of her session, our little Maddykins took two independent steps. She was beaming from ear to ear, so proud of herself. We all clapped and cheered, and I teared up a little. It’s a huge deal to watch her learn to walk, as it’s much more difficult for babes with vestibular issues, because balance does not come easy to them, and they have greater fear of movement and height than other babes. We’re certain that she decided to take her first steps after an OT session because her sensory needs had just been met, but we’re hoping we can replicate that it at home, too.

This just in – a couple more independent steps today!!

All of these fantastic photos I’ve shared today were done by Jenn over at Bloom Photography. If you’ve never seen her work, I highly recommend checking out her blog. We have done three sessions with her (maternitynewborn, and Maddy’s one year). She is so talented, easy to work with, patient with Maddy, and always returns beautiful work. To anyone looking for a photographer in the KW area – she’s your gal!