The Helmet Fitting
Back in November, the boys started physical therapy for a condition called Tortocullis. The kids grew unexpectedly fast for being preemies (they still are!) and all of that weight on muscles that were 2 months behind caused a few problems. They were as big, if not bigger than a full-term baby this age, but their muscles were developmentally two months, maybe three, behind. Basically, they couldn't move very well!
We had the boys sleeping in swings at this time, they were about 6 months old. Because they slept upright most of the day, they started to favor looking out on one side of the swing, which was toward all the action! The extra weight combined with this sleeping position wreaked havoc on their neck muscles. They started to get "stuck" looking to the left. Their heads tipped down to their shoulder, ear almost touching - and this was constant. They just didn't have the muscle tone to fight it and return back to a righted position.
We took them in for their check up and they recommended starting physical therapy to correct this. We started taking them to the Children's Hospital PT Department where a lovely PT named Dominique stretched and pulled and tugged ever so gently on their shoulders, necks and arms. She noticed that Cole was the most severe, most likely because his head was the biggest and therefore more heavy. She told us we needed to be coming in a few times a week to start seeing a positive progressive result. We just couldn't make that commitment! It was hard enough getting out of the house every few weeks at that time with all three! So, she suggested a State Aid program called Early Intervention, EI for short, that was controlled by each county. It's free to those who qualify for therapy, no matter what your income. AND, the best part is that they come to your house! Yay! It was the break we were looking for, so we signed up immediately.
Through all the red tape and paperwork, the therapists came to the house to evaluate the boys for therapy qualifications. Of course, they were both in desperate need for it, so they both got on board. We started Physical Therapy (PT) and Occupational Therapy (OT) right away, with both therapists visiting the house weekly. After a few sessions, the PT noticed that because of the "stuck" position the boys had been in for quite some time, the back of their heads were extremely flattened on one side. They were significantly misshapen and that required attention.
It was not only the aesthetic aspect, it certainly looked terrible and we didn't want them to deal with a misshapen head for the rest of their lives! It was also an alignment problem. Since the one side of their head was growing out and the other wasn't, it was throwing their whole head out of alignment as it grew. Their eyes were tipped, one ear was higher than the other and their jaw was torqued. If not properly guided back to a central plane, these parts of their faces would suffer serious life altering affects in the years to come. Because they were learning to adjust to the world, their brain would assume that this tipped line of sight was normal and begin to see that way. Then, if a correction was made to their heads/eyes later in life, even though their eyes would physically be straight, their line of sight would remain crooked. Weird! So, we felt a sense of urgency to correct this major problem. I think their jaws worried us the most.
We were led to a great Orthotics place who make helmets to correct the shape of babies' heads. We went for a fitting, paper mache and all, so that the kids would have a custom fitted orthotic. They were called "Star Bands", not sure why...but they were made of a hard plastic shell with layers of foam painstakingly adhered to the inside. The idea is that as the kids grow, they remove parts of the foam, one layer at a time in an area they want to encourage the head to grow into. Otherwise, they left the foam to "hold" an area, as they called it, encouraging the growth to the path of least resistance, the open spots. In no way did it press the head or constrict growth, just encourage into a certain area. It was actually quite loose! We were able to pick the design on the outside of it, to make it more fun and less of an obvious medical device. It also had a opening in the top, a circle, so you could just see the new hair they were sprouting poking through the top. So cute!
Braden was having a hard time, it was hard to watch...
Cole is in good spirits!
Still doing well!
Phew, it's over! Covered in plaster...
It did a tremendous job for both of the boys. Braden's condition was much less severe than Cole's, so he only had to wear it for about 3 months. Cole had his on for about 5 months. Much less than we anticipated, since they warned us we might need 8-10 months at the high end of the estimate. The point is to keep them on until we see a desired result, and then keep it on any time the baby may be stationary, laying on the back of his head for a long period of time (ie, sleeping) until the growth plates fuse.
On New Year's Eve, we picked up the new helmets. Day One! We started on a schedule meant to acclimate them to their new accessory, and after two days, it was on full time. That meant, 23 hours a day, 7 days a week. One hour break to get a bath and to clean out the helmet with alcohol. After a few days, the boys were fine, barely noticing them. It was actually nice protection for Cole, who was just starting to move around, rolling into the points of the coffee table. It protected him more times than we can count over those few months!
We traveled to Rochester once a week to the Orthotics place so that the helmets could be checked for the need to cut out any new foam areas. It was tedious, but we kept reminding ourselves of the ultimate goal! We had a tremendous experience with everyone involved, we would recommend it highly to those who are worried too! Best of all, EI took care of the bill for us, since Insurance does not cover the cost of the helmets. They consider it merely an aesthetic device, which is so far from the truth, it's silly. We have been told many a time that we are lucky to be living in Genesee County, since the services are much better over here. We know how lucky we are and thank God every day for the services we have been put into contact with - our babies are in good hands!
They were actually kinda cute...
And it never stopped them from trouble,
Friday, August 15, 2008
The Helmet Fitting
Thursday, August 14, 2008
We usually give the kids a bath separately every other night. All three right after one another, boom, boom, boom. An assembly line of cleaning babies! I bathe them and Mike does the diapering, lotioning, changing. And that means that at any given time, there is a baby hanging out, somewhere in the house, left to their own devices. Scary.
We typically put on their favorite Sesame Street Sing Along DVD, complete with "Rubber Duckie" so they can get psyched for their bath! Well, ok, that's not the reason. But it does keep them occupied for the little time we need them to be, which gets me psyched! Plus, we get the added bonus of memorizing every. single. song. on that DVD. Put that on my resume!
So, it's not the best situation, but it works, for now. I have been wanting to try bathing all three together...to see what it would be like...easier? harder? I needed to know! It seemed that if we could conquer this feat, it would cut bath time down significantly. And that, dear readers, would be so priceless to us. You see the motivation here? That, and it would be super cute, seeing them all in there together, playing together.
It was more than just a bath together, it was a Big Day! We got them all in and Mike pulled out the "Bath Toy" he has been saving for this very moment. I kid you not, it was that important! We actually had it on our Registry List for our baby shower...Mike scanned it when we were about 5 months pregnant with the trio, looking like a little kid himself. I was laughing and crying because when he found it, the look on his face registered pure joy and excitement. He was really ready to be a Dad. In that moment, I knew we were going to be ok.
All that over a toy!
Now, you wonder, what kind of toy could change us so profoundly? A Crayola Bath ColorWorks Suds Thingy. I can't remember the exact name of it and I'm too lazy to go find it right now...but in essence, it makes the bath a Bubble Bath, and changes the suds different colors - it allows the "kid" (however old they may be, say 35) to twirl handles, flip levers and press buttons, all to create suds and change the bath into a green or blue foaming mess. Fun! I think they are still a little too young for it yet, and Mike is still a little too old for it, but it was fun nonetheless. ;)
Braden is so gosh darn adorable...
Playing with the ColorWorks Thingy
Cole, with the typical wagging finger in his face!
"Three in the bath" was a fun experience, but certainly not the efficiency model I was hoping for! Letting them all play took a lot more time than before. So, back to the one on one time....maybe in a few months we'll go back to bathing them all together and get the stopwatches out again! Just kidding. I am really hoping they can start to enjoy bath time together instead of being soaped up in record time just so Mommy and Daddy can throw them into bed a little quicker each night! Play time for them is important enough to us to lose a few zzzzs every once in a while.
I am going to try something different here. There have been so many events or just little things that I have never posted about since so much time passed after them, they seemed irrelevant to tell the story at that point. Say, like the Christening. Huge! But I never got a chance to post pics or tell the story. So, I think I am going to go back and pull out some random pictures every week, something I missed posting because I had no time at the time, and "fill-in" the gaps. Hey, it might be fun! I can call it "Fill-In the Gap Friday" or "Flashback Friday"...I'll work on that. But, hopefully I will post tomorrow - that would be a record! Two days in a row. Whoa. I am tired all ready... See you tomorrow!
Thursday, August 7, 2008
Their first vacation. A Momentous Occasion!
Armed with a truck full of supplies, including a duffel bag just for diapers, we head out the door last week to visit my parents in the 1000 Islands. My childhood vacation spot, I was eager to introduce the kids to "The River", as we affectionately call it. The St. Lawrence River for tourists, it's a great, wide and very deep waterway. Here, deep water mixed with a current means pretty darn COLD water. Usually too cold and forbidding for most people to even touch a toe to, the river hovers between 65 and 72 degrees on a REALLY good day. My mother calls all those who are used to the chill "River Rats", but unfortunately, I am not in this club.
My parents have a little place northeast of Alex Bay, upriver from the popular vacation town. It's a modest ranch, cozy and well-thought out, with a gorgeous view of the water. They spend as much time up there as they can and rent it out for the rest of the summer. A nice dock, a hammock, fire pit, and water splashing on the rocks just 30 feet from the door all give this place a genuine appeal worthy of relaxation and fun! It sounds great, right?
Well, I think we have a raincloud over our heads. Isn't there a Peanuts character like that? Anyway, every time over the years that Mike and I have ventured up to The River, we have encountered rain. Enough rain to make it cold and drizzly and damp, enough rain to stay in the house and snuggle up, no chance for swimming or tubing or even just boating. We must have that kind of luck! Knowing this, and bringing the kids up last week, I nervously checked the weather for days beforehand, the morning of... it all looked good. We drove up the Thruway, stopping for lunch at a little grassy spot. Spreading a blanket out to let the kids stretch their legs and have a bite to eat, we were enjoying the balmy weather, the sun, the nice breeze.
Arriving at my parents' place, the weather stayed fair and we settled in. I was beginning to think our luck had turned around, that we had left the curse behind.
We took the kids out back, to where the water kissed the rocks, to ceremoniously dip their toes. They actually did great - wanting more after a few seconds. So, I started thinking, maybe the water is a little warmer than I remember? It has been a few years since we last came up. I waded in with Cole, sitting down on the ledge to put my feet in and....YIKES! Not warmer, but colder than I remember! According to my grandfather (Pa), he thought it was about 70 degrees, but I was solidly convinced that it hovered in the 40's... I left my feet in though, trying to be tough, thinking that I need to start acclimating myself for the kids' sake - they were already River Rats, 30 seconds in! It only really warmed up to refreshingly cold. My insides were freezing, all the warmth leeched out and floating downriver with the seaweed. How do they swim in this enjoyably? But the kids were having a blast, splashing and trying to pull me in further, so we decided to grab their gear and head back out soon.
We unpacked and fed the kids again (they are always eating!), and started the long process of getting them ready for the sun and the boat. Change to swim diaper, slather on sunscreen, put on lifejacket, hat and sunglasses...put on sunglasses again, find hat that was thrown on the floor...you get the idea. We headed out with the rigid babies - they hated those stiff lifejackets. Have you ever seen the movie "A Christmas Story" with Ralphie? The part where his little brother is mummified in his snowsuit, falls down into the snow and can't get back up again? It was just the same here...these little guys couldn't really move, couldn't really sit up very well, so they were pretty miserable.
The Alex Ertel Turtle
Couple that with the blazing bright sun (go figure!) and they were ready to be done before we even started.
We hopped on the boat and my dad took us for a little cruise around some of the islands and into the channel.
Mike took this beautiful picture of the sky as a cloud settled in on our sun. Little did we know that this was The Dreaded Raincloud that would stick with us our whole three day vacation.
After a few more minutes, "Light Switch Braden" as we call him, flipped the switch and lost all control. He started screaming and crying and flailing - he wanted the lifejacket off, and NOW! He was on overload; the sun, the wind, the drive up...he was done for the day. So, we headed in, naively thinking we would have plenty of chances to enjoy the water over the next few days.
I was so proud of the kids - this was their first time away from home and routine and they did so great! We set up pack and plays for them to sleep in and I was a little worried that they might not be able to sleep, especially with us sleeping in the same room...but they did. I should never worry about a sleeper that is my child. My family must have a "can sleep anywhere, anytime" gene embedded into our DNA. And that worked in our favor here! They ate well, they slept well and they played well...albeit inside. The rain came in the night, stealing away all of our hopes of swimming and frolicking in the frigid water - hey, what am I complaining about? I got a free pass from freezing my patootie off! Anyway, we spent most of the time inside...and that was ok. My parents are great hosts and didn't complain once about being cooped up with the loud trio.
We ventured into Alexandria Bay on our second day, hoping to escape the rain. Instead, we drove right into it! We wanted to visit the quaint little tourist town, gawk at the big, beautiful yachts and do some trinket shopping. Best of all, we wanted to show little Alex her namesake town - even if she didn't understand yet - I wanted a picture of her next to the town's sign, I thought it would be a cute little souvenir of their first vacation...
Rain can be such a spoiler! Instead of bringing the stretch limo, we thought it would be more practical and space saving to lug the umbrella strollers instead. We have a double and a single, so we thought it might just work better. I have to have a talk with the Town Board because there were very few stores with handicap access, which meant no shopping for us. A few rickety stairs were all that were keeping us from patronizing, and I was a little miffed!
Then, it started to rain. I mean the "raining buckets" kind of rain that prevented leaving the place we were currently occupying 5 seats in. Literally, sheets of water were falling from the rooftops in a cascade that blocked the view of the street! So, we stayed put and jiggled and rocked and swayed the kids as much as we could until we were set free. They were soooooooo miserable and loud. I know that soooooo is not a word, but it's a pretty good descriptive of just how much they wanted to go home. After only a few good minutes of walking around, but a few hours of being gone, we surrendered and headed back to the cottage. No picture, no trinkets, no yachts. *sigh*
The kicker was....my mom told us that it never rained back there....all day. But it followed us back, raining into the night...
I'm starting to get a serious complex here!
The kids definitely had fun, and so did we...as long as you keep in mind that vacation for us (for a while) is just the same routine you do every day in a different, scenic venue. I can handle that...especially with this view! But this was merely a good practice run. Pray for us, dear readers...we are headed for the BIG vacation soon, heading up to the Adirondacks with Mike's family for a whole week. We're going to need all the prayers we can get!
A glimpse of Boldt Castle and their miserable faces...
We did see this cool pirate ship!
On the way home, stopping for a bite...they are NOT eating the Doritos!