Toddler Thursday: Getting the diagnosis…. Then (whew!) finding out it is wrong

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As a parent you will do anything to make sure your kids are safe and happy. With the first baby especially, you stress and worry and panic and wonder if you are ever going to do anything right. My oldest was an early talker, a very early talker and a late walker. I had always heard that you either talk or walk – that babies focused on one area of development at a time. She talked early and walked at 17 months. Perfectly reasonable and within “normal” ranges, so it is fine.

Fast forward to twins.

Again, I stressed, I worried and I wondered if I would ever get anything right. Don’t get me started on sleep. The twins are now 2 ¾ and we still have sleeping issues…. The boy girl twins, like my older daughter, were early talkers. And late walkers. Sidney walked at 17 months just like big sister. But Spencer did not. He did talk early but at 17 months was not walking. It is ok, he will get there. And at about 18 months he took 5 steps into my arms. And I cried and screamed and attacked him with kisses.

He did not walk again.

He did not even cruise.

At 19 months I emailed the pediatrician and said, “I know you are going to tell me not to worry but at 19 months Spencer is not walking yet”. Her reply was like a dart into my heart. “Maybe we need to get him evaluated.”

I called Birth-to-Three and after a scheduling nightmare I gave up and called the pediatric rehab center on my own. My mother-in-law came with me. Her job was to listen to everything I missed and hold my hand. She did great. Spencer did great. I did not. In my defense, I did not mesh well with the therapist. I am 100% positive she is very qualified and good at her job, but I constantly felt blamed. “If you don’t pick him up he will walk.” That comment had me in tears. And had Spencer in tears. I will never forget his baby arms reaching up for me and his baby screams while this (evil) woman tells me that he is not walking only because I pick him up.

The therapist would hold toys just out of his reach and try to force him to reach for them to build up him muscles. Spencer would give up and move to a different toy. And I don’t blame him. But she did recommend that he wear braces on his ankles.  So I consulted with the pediatrician before making that appointment. She laid Spencer on the exam table and moved/manipulated/rotated his legs. She called them “spaghetti legs”. She could move them in any direction. His muscle tone was low, but she did not think that was a huge cause of worry, he could build up the muscles.

But she saw something else in his legs. “Beth, I want him to see a pediatric neurologist, I think he may have Cerebral Palsy”. And that was all I heard. She did talk me down (ish). She reminded me that if he did have it, it was not the end of the world, it was not a brain tumor (ok, an extreme example but she had a point).

First step, ankle braces. So we made the appointment and Spencer was fitted with baby ankle braces. Everyone told me that these braces were a miracle and that the minute they were on, their baby walked.  Spencer did not. (In his defense they measures the braces wrong and needed to redo them so he wore the wrong ones for a week or so…) Slowly, slowly, he started taking baby steps. But he still preferred crawling or being carried.

And then, one day, with my heart in my throat, I watched my baby boy walk. Those tiny little dinosaur printed ankle braces changed our world. At 21 months, Spencer walked barefoot. He had full control, turned, pushed toys, carried toys. He was there. I tear up now remembering that day.

With my mother-in-law in tow, we took Spencer to the neurologist.

You know when you have those days where every detail sticks perfectly in your brain? That day was one of them. The neurologist pronounced my son (he actually evaluated both kids and pronounced them both) as “perfect”. He said Spencer did have low muscle tone but that he did not even need physical therapy or the braces. I kept him in the braces for a few more months anyway because I bought a new wider pair of shoes to accommodate them. When he sized up in shoes, he left the braces behind.

My gorgeous, amazing, funny, cuddly, little man is perfect. He runs (not well and not fast, but he gets places faster than walking). He might not be a soccer player or football player but that will mean less concussions, so I am good with it. And one day, while waiting for big sister’s school bus, he jumped up in the air. Both feet off the group, jumped into the air. My baby boy. I have never been so proud.

Really, when he plays with his friends you would never know what we went through in the spring of 2014. We still have some work to do though. He does not like stairs and prefers to be carried, especially when he is tired. When we hold hands on the stairs, he turns his foot inward and we want to work on that.   When he moves to preschool, he will need to be able to walk down a long staircase to the playground and that staircase does worry me. But we will take it all day by day, step by step and now jump by jump.

As a mom you would do anything for your kids, and if Spencer did have Cerebral Palsy, we would have researched and become the experts at CP. It was only a few months. And in the grand scheme of things, it was nothing. But it was also everything.

I would check on him at night and put my hand on his back and watch him breathe and stroke his cheek and wonder if he would be able to walk without braces, if his peers would be cruel, how a disability might affect him and our family. We are so blessed that we don’t have to worry about these things. But if I ever do, I know that my support system is strong and I want to publicly tell everyone how fabulous the “how do you do it” group is. Because they got me through the beginning. They were a huge help in getting me from the emotional stage to the logical, research nerd stage. You need the emotional part. You need to cry when you get news like this, but you need to hit that research stage hard as well.

Our lives are “normal” now (or as normal as life with toddler twins can be). When I take the twins down the stairs, I hold hands and lead them down one by one and that is our normal. I help Spencer turn his foot on the stairs and that is normal for us. But when he does not want to come inside, I chase after him and now that is normal too. And even while I am chasing after him, I know how blessed I am to have a baby boy who can run away from me, as long as he never ever runs into the street!

 

Beth is known as mommy by a 6 year old and boy-girl twins who are almost 3.  She blogs about life, kids, and DIY, at Pickles in my Tea and in my Soup.

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Toddler Thursday: When Your Toddlers Aren’t Toddling Together

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We’ve all heard the common question, “How do you do it?” That is how we got our name. Another common phrase I have heard over the years, as many parents of prematurely born twins do is, “They’ll catch up on their own time.” I hate to say it, but sometimes this phrase is like a Band-Aid trying to cover up a bigger “owie” than it can. Sometimes it’s the only thing people can think to say to try to make the mother feel better, when she is wondering if there is a bigger problem to be addressed.

Take my little guys, for example. Growing and progressing a little more slowly than the average baby, but also born much earlier than the average baby. We always take their early arrivals into account. We don’t want to overshoot and stress them out during their development, yet, as a mother I don’t want to undershoot their capabilities by overprotecting or making excuses for them. I believe mothers of premature children may be a little more likely to overprotect their children at times, and that’s okay. Everyone has been through a lot! I also believe there is a balance and it can take a bit of time and self-reflection to understand your parenting style.

My twins are about to turn 4 and when I think back to two years ago, I remember twin b was not yet toddling. Meanwhile his twin had started motoring around on his own. Twin b was able to walk everywhere on his knees, but not his feet. Alarm bells were going off in my head, but I tried to ignore them and give my son more time to figure it out. We shouldn’t compare our twins, as they are individuals and they often do learn things at different times. I kept watching him closely and mentioned it to a few people now and then. I often heard, “he’ll figure it out on his own time.” Hmmm…Are we sure about that?

After lots of watching him in silence, assessing and reassessing; working with him one-to-one to try to get him to walk, I finally trusted my instinct. Something was NOT right. As he approached 24 months corrected/27 months actual we looked at his feet closely. I knew he was able to walk if he had the right support for his feet. I had inspected his feet closely, compared them to his brothers (sometimes comparing twins IS helpful,) watched what he was doing when he tried to toddle and cruise along the couch. I put 2 and 2 together when I realized he could cruise without a worry, but as soon as he tried to stand in the middle of the floor or walk, he’d collapse. His teeny tiny feet just couldn’t keep him standing upright because his feet were very flat and one was practically turning over. We weren’t seeing it because we were trying to promote his walking by keeping him in supportive shoes most of the day, which was supported by his physiotherapist. Once I realized his feet were likely the problem, I contacted our PT and she said my instincts could be correct and he was seen later that week. She yanked off his little shoes, assessed his feet and confirmed that his feet would benefit from the use of orthotics. He was fitted with a custom pair of ankle-foot orthotics (AFOs).

The day we picked up his custom AFOs, the physiotherapist helped him put them on as the orthotist watched. First we had to dig through a box of extra shoes at the centre to fit the larger sized AFOs. Once the AFOs and shoes were on, twin b was set in the middle of the floor…and…HE STOOD…and then…HE WALKED! ALONE. It was amazing to see unfold. One moment he’s a non-walker, the next he’s toddling around the assessment room on his own! I could not hold back my happy tears! They were also likely tears of relief, but I didn’t realize it at the time.

The moral of this story? Trust your instincts and if you feel something isn’t making sense or you’ve said and heard, “he’ll catch up on his own time,” maybe a few too many times, it’s okay to put your foot down (pardon the pun) and ask LOTS of questions to get the answers you need.

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Wanted: 2 Bubbles for My 2 Boys’ Wibbly Wobbly Woes

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Wanted: Two Bubbles for My Two Boys

My preemie twin boys turned three years old recently. They are still working on catching up to the average three year old and we’re respectful of this fact and we work hard to help them along the way. It takes a lot of patience.

I mean a lot…

Of patience.

But there are those days when I am at a loss. My patience is worn thin. And I wish there was a bubble I could stick each of them in to protect them from themselves! I mean this in the kindest, gentlest and most protective mommy way. I love these little dudes and I hate to see them get hurt!

Case in point…last week, the end of a long, busy work week I found myself sitting in an Emergency Room waiting area for over 4 hours, past 12:00 AM, to have Twin A’s damaged eyebrow looked at and stitched up. Did he get hit in the head by a toy? No. Did he get in a scuffle with Twin B or big bro? No. He stepped on his own foot, lost his balance, and keeled over right onto the only kind of pointy edge on the baby gate…which is meant to protect him!

The boy is wobbly!

This event took place after a week of appointments and additional stress of both boys having allergic reactions to mosquito bites and becoming puffed up little children. First I thought I had to worry about West Nile Virus and now I have the additional worry of puffy little boys covered by gigantic swollen bites. Which then leave scars!

Then this evening we went out for a walk at the park. I slathered my boys in mosquito repellent in order to avoid West Nile and puffy reactions. My husband and I each manned a “baby” and kept an eye on the big boy. Three kids running in different directions on big, scary jungle gyms.

They are scary to me. Not to my kids.

It’s 3 against 2 in these situations and sometimes it really does feel like we’re losing from the start, so to speak. When we’re at these playgrounds the object of the game is to not get hurt. That is all. The level of stress can be high. The ability to relax can be hard.

We made it through the playground okay. No falls. No injuries. No tears. YES!

I relax…

Too soon.

No sooner do I turn my back to Twin B to take the big guy on a washroom run, when Twin B takes a single step, trips himself up and lands on his head. Not his bum. Not his side. He doesn’t try to break his fall in any way, shape or form; maybe because it happened so fast? Instead his head broke his fall. His head. The twins are not identical, but sometimes I do wonder. They do so many of the silliest things in the same ways. This is where the desire for a couple of nice, comfy bubbles made of Kevlar comes to mind. We try so hard to protect them from things, yet we know we can’t do it forever. So we try to relax.

When my three preemies came up in conversation when at a doctor’s appointment a few years ago, my doctor advised me to try to avoid being an over-protective parent, knowing that this is something many preemie parents deal with (she is a preemie parent herself.) Our little premature babies make it through the hardest of times and we want them to be safe and boo-boo free, but it’s hard to decide what really is “over-protective” vs. the average caring parent. Just like there is no specific instruction manual on dealing with a preterm birth, there isn’t one for raising preemie kids or any kid for that matter.

We just have to take it one step at a time…and hope we don’t fall flat on our faces!

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