I was informed the other day that i hadn’t updated Ozzie’s blog in a while, guilty as charged. It seems when everything is good, i don’t think to write… but really, we should be celebrating all the good that’s happening. I tend to dwell on the other ‘stuff’.
Being a stay at home mom has been pretty amazing, but the problem i’m finding is that without something to break up the monotony, the days tend to zoom by and i’m constantly asking, ‘what day is it today?’ – i never know. I have to look on my phone to see if it’s a Tuesday are a Wednesday, only to discover it’s actually Friday. This happens a lot.
So where to start? about a month ago i got a call from our ophthalmologist, she said she had just returned from a conference in Montreal where she asked some of her colleagues about Moebius Syndrome. None of them had heard of it, which is not surprising. Anyway, she decided that because of the bilateral strabismus associated with ozzie’s moebius and his limited corneal sensitivity, she was not comfortable performing his strabismus surgery. To that effect, she referred us to the Ophthalmologist, Dr. Lyon, in Vancouver at BC Children’s Hospital. He has performed this surgery on another Moebius kid (who we met at the conference). We fly to Vancouver in November for our consult. I’m not exactly thrilled at the prospect of his surgery taking place so far away from home, but i’m glad that she was honest about her comfort level. i’d rather her NOT perform surgery on my child if she was uncomfortable. Still, Vancouver…. sigh.
Ozzie has just been progressing in leaps and bounds! He walks damn near 100% of the time now! He is getting more confident with each step, even though he is wobbly and unsteady, and easy to fall down. He just gets back up and continues on his way. He’s even trying to RUN a bit, which is adorable and terrifying. He is more determined to try things on his own, although he will still sometimes ask for help.
His eating is still much the same, pureed foods, but they do have some texture. I’m also giving him pieces of banana on a plate to eat, and those little Bear Paw cookies that are super soft? he likes those too, in little pieces on a plate.
He still is not sucking through a straw (i had to help him have some of this slurpee with the spoon end) but just this weekend i think he figured out how to drink out of his red sippy cup. now we carry it with us where ever he goes, in case he wants some “Wadder ina da new red sippy”.
He is still drinking from his MAM bottles, but mostly just during the day – at night he has a little drink from a cup before bed.
Some other new developments – he had his first trip to the Pediatric Dentist last month – and it was horrible. It was traumatic for him, i knew it would be. He does NOT like things put in his mouth, on account from all the suctioning, i’d wager. The dentist did manage to get a look at his teeth though, and confirmed that he still did not have his last set of molars – which he is CURRENTLY working on. yay.
She didn’t notice and dead or dying teeth, although there was some tartar build up, and helped us devise a new bedtime routine that included brushing. Teeth brushing has always been hit or miss with him, and then it was only the front teeth he’d let us clean… Apparently, the secret was a “NEW” toothbrush. Now he has no problem letting us brush his teeth, including the back ones… all because of his “NEW” toothbrush. lol. funny kid.
The dentist also asked us about his pacifier use. We have been trying on and off to wean him from the sucky, but in times when he is in hospital, or stressed out, or scared, the sucky seems to calm him down. So we will go for weeks without using it, then there will be a relapse. She told us not to worry too much about it, even though he is almost 3. She said that Dentists say that kids should be done with the sucky around 3-4, but that’s to avoid any future dental problems. Ozzie will have dental problems, regardless, due to his smaller jaw, asymmetric tongue, drool, oral aversion, and inability to use his tongue to move food around his mouth. yay, a future of dental bills. we will see her again in six months.
Ozzie also moved from night time boots and bar wear for his club feet to night time AFO wear. (Ankle-Foot-Orthotic). It was becoming impossible for him to sleep in the boots and bars, especially when sick. He couldn’t sleep on his side. It’s like sleeping with a snowboard attached to your feet. Now he wears these braces which keep his ankle at the right angle while he sleeps, but they are not attached to each other, so he has some freedom of movement.
He’s been having a pretty great summer. We’ve been avoiding appointments as much as possible. (sorry jenn! we’ll see you in september tho!) but we did go to his check up with his pediatrician, Dr. Leis, who is amazing. i love her. so much.
She said Ozzie looks great, which is great! One of his ear tubes has come out, the other is still in. His lungs sound great. His mobility is great. His language is incredible and his speech is slowly coming along…But it appears that Ozzie is on the 58th percentile for his weight, and only the 0.1th percentile for his height. In the last year, he has only grown 1 cm.
Percentiles rank the position of an individual by indicating what percent of the reference population the individual would equal or exceed. For example, on the weight-for-age growth charts, a 2-year-old girl whose weight is at the 25th percentile, weighs the same or more than 25 percent of the reference population of 5-year-old girls, and weighs less than 75 percent of the 2-year-old girls in the reference population. – source
So, Ozzie is as tall as 0.1 percent of almost 3 year old boys. It’s troubling that he has grown, linearly, such a small amount. She ordered some tests, and i had to take him for a blood draw, which was awful. I had to lay down on the bed with him and hold him still between my legs and hold down his chest and shoulder with my hand. He screamed. And cried. And when we were all done, he said; “Mama, i go to my home in mama’s baloo van.” it was sad.
the tests showed nothing glaringly obvious, so now we are referred to the Endocrinologist (the hormone doctor) to see what he thinks, and what the next step of tests will be.
Aside from that (and the teething) it’s been a pretty fine summer.
Ahh its great to hear Ozzie is doing well. Jake’s height is in the low percentile too, the drs have shown some concern about it. I wonder if that has anything to do with moebius?
interesting. maybe i’ll ask on the facebook group to see what the other moms say.