Friday, June 29, 2012

The Best Toys ...

Summers in AZ are tough, especially when you can't go to the pool or waterpark. It's been a struggle to keep Isaac and Keila entertained while caring for Elias. The little guy is just too young to be out in that searing sun. We did buy an above ground pool, rather inexpensive and deep enough for the adults to sit in and cool off while it only comes to Keila's armpits. They especially enjoy playing in it with Kent.


That's helped a little bit, but during the hours when the sun is at it's worst we stay in. They had a few new toys, nice ones, but of course they were tired of them already. Boredom has a way of generating creativity. One day Isaac found this old industrial fan we inherited from Kent's parents years ago. It broke while it was on the highest setting making it terribly noisy and windy when plugged in. In our cheap student days, we keep the house at 81 degree during the day and ran the fan like crazy at night to draw the cool air through. It sat forgotten in a closet till Isaac dug in out. He screamed with delight when he plugged it in and the next thing I knew, he and Keila were placing different item on it laughing as it flew off.

Isaac experiment with all sort of object to see how they would fly.

Keila's favorite was having her hair fly in all sorts of directions.

So, the lessons learned, price tags don't reflect how much a toy is loved or played with. Secondly, if you want your children to be creative, let them learn to be bored!

Monday, June 18, 2012

Who Knew?

Of the many appointments we have with Elias, my favorite has to be physical therapy. I've learned so much in the few times we've gone and feel like I can effectively play wiht a baby instead of making strange noises and waving endless toys to elict a smile or reaction, It's amazing to me how God has made reflexes that naturally teach an infant so much to make crawling and walking possible. I thought I'd share a few things I'd learn, but keep in mind this is a lay person's attempt at explaining

When we first heard that infants had physical therapy (PT) we were a little surprised. After all, they just kind of lay there, right? Apparently not, learning and growth is occuring all the time so we had to learn what motivated them. In children with Down Syndrome, the muscle tone is low and therefore will often just lay there with very little movement. Elias was blessed to have more tone than is typical so it was a matter of helping that along.

Tracking (or where the eyes follow a moving object) is one of the first things they do. But I'm sure you've all waved a toy in front of an infant only to get a glazed expression. Apparently before 3 months of age, the typical child sees constrast more so the colorful toys you offer are yet to be appealing. Our PT used a toy with flashing lights which quickly got Elias' attention and he'd turn his head to just see the object. We used this alot since he had a tendancy to turn only to one side, leaving the other muscles on the other side underdeveloped. Despite his attractive toys he still tended to the one side and we had to place him right up against a wall. Supposedly it gives a rather suffocating feeling without fail he looks upward and when he's bored he turns to the weaker side.


I love his hair!

I gave Elias alot of tummy time, something that almost all babies hate initally. The head is nearly 1/3 of their body and rather heavy so it's amazing to see how quickly they can gain the strength needed to hold it up. Elias took a while to figure out how to put his arms forward, and grunted and strained much like a beached whale. With a little practice though he figured it out and now Isaac loves to cheer him on when he does his 'baby push-ups'. Being the bright little cutie he is he used stronger arm and leg to roll back over onto his back to avoid tummy time.


Gently pushing downward on their lower back to stretch the muscles can encourage them to lift their heads. Be warned though, it tends to release alot of gas and Keila and Isaac had a few giggles when this happened.



At some point they begin something my PT, Sarah calls a warrior pose. As they lay on their back and look in the direction of the out stretched are and the opposing arm becomes bent. This is really a point where they're moving towards rolling from their back to their stomach as the bent arm will reach over to the opposing side. Sarah taught me rotate his hips and to tickle Elias side to get him to do this. He hates being on his stomach and will resist by wiggling like a worm until he whips his arm over to keep you from tickling his side and momentum takes over.


He's Mr. Bobble-head no more!

Who knew so much happened in the first 4 months of life! Most of this occurs on their own so that they're able to sit up and begin eating solids. It amazes me all that is possible. Obviously in Elias' case, some of this if not all will be delayed but it makes reaching each milestone ever so much more to celebrate because we worked so hard to get there. He often comes back after these PT appointments utterly exhausted. He may be little, but I'm ever so proud of him as he works harder than the average child to grow and learn. He's my darling little man!

Thursday, June 7, 2012

Isaac is Five! (and Other Misc Stories)

It was a rough week two weeks ago and I'm grateful to have a long weekend to recoup and for Kent to take a little of the load off of me. We had a total of 5 appointments that week, 4 for Elias and one for Isaac. From talking with friends, they say the first year seems the craziest until we settle into our new normal. I had to laugh and cry at that statement, life is alot about adjusting to such a large spectrum of 'normal', it seems to be the thing that makes us grow the most!

As for all the appointments, apparently Elias is aspirating a great deal. We weren't sure initially if it was poor muscle tone, lack of coordination, too much milk to handle, etc. Every feeding was an experiment of sorts, from using the Dancer's hand position, to breast shields, to bottles. We finally did a barium swallow. It was actually a rather facinating process and had I not been so stressed I might have even taken a picture of it! Elias swallowed various liquids and he was x-rayed with each one so we might see which pipe it was headed down. Without fail, within 2 or 3 swallows almost everything was threaten to go down the trachea. We now thicken his milk with something known as Honey Thick which is exactly what it says, thick as honey. It looks like a milk shake without the calories! Kent being the crazy pharmacists he is, looked it up and we discovered a few interesting things. First off, it's the stuff that they use in salad dressings and is tasteless. Second of all, when you shake it the liquid becomes less viscose but as it sits and settles, it congeals again into something thicker. It was a nice tip to learn since Elias was getting red in the face trying to get the stuff out. We switched to another bottle and another nipple (level 3) and along with all the shaking we do between ounces, Elias if finally getting the hang of it. Here he is stylin' with his faux hawk!


As for me, I went through a period of mourning. When I first nursed Isaac, I had a hard time of it. I felt like my body was not my own and wouldn't be for many more months. As time passed I grew to love how it was a quiet bonding time where we could take a break from the busyness and snuggle close. Isaac would take 40 mins which was a little crazy but do-able with only one child, Keila was a barracuda and finished feeding in 20 mins but Elias really struggled. I wanted to make it work so I researched up everything I could to help him. He did get faster but he was still gagging which kept me up holding him so much of the time. With the thickener I could really see he was eating better, but the selfish part of me missed the intimacy of being skin to skin and nurturing in a physical sense. I pump as much as I can (which is another nutty story in and of itself) but somehow it really loses it's motherly feeling and I feel more like a cow in a dairy farm. Ahh, the things we do for love. It's become a bit of a joke for us, so if you catch me moo-ing on and off don't be too alarmed!

Keila is adjusting at her own pace to everything. You can tell the days she chooses to be the 'big sister' because she's all about potty training. Those days she wants the Pull Ups or her training panties. She rarely has an accident and does beautifully. But on the days she wants to be the baby again, she's begging for her diapers and begging to be held. Sometimes it's hard to be patient, but I have to try and remember that she's struggling too and doing the best she can. We all have our days .... The following picture I had to take. Isaac is super happy when Keila uses the potty. He seems to think that it has to with him teaching her. On this day she wanted to Poo Poo and so Isaac loudly declares, "We have to be prepared!" and proceeds to haul in a grocery cart ( their toy grocery cart) full of books. I think they could have sat there for hours if I'd have let them!



We discovered that Isaac has asthma of sorts. It hasn't slowed him down any (darn it!) but has him up wheezing and coughing at nights. I try hard to remember his nebulizer (... wouldn't you know it, I just realized I forgot for tonight!) but my brain is still missing. Let me know if you see it anywhere! He just celebrated his 5th birthday. Typically we do something as a family and then share cake and ice cream with a few close friends. This year he begged for a birthday party. In fact he ws inviting preschool friends to it back in January! Talk about being prepared. With all that was going on with Elias I nearly forgot until the week before. Thankfully we have very understanding friends and we whipped up a little party for him and a bunch of boys. They played at an indoor playground, came home for pizza and cake and ice cream. Isaac enjoyed it but was a little sad when it ended. He said that it was "too loud and too quick - boom it was all gone". I guess it was a little anticlimatic for him.




Kent took all the kids there and I took refuge from at home. Elias doesn't sleep well as is and we didn't want to start that negative feeding cycle again. But I was sad to miss all the craziness that is my son with his friends. Kent said they had a blast. Their appetite was clear indication of how much energy they had expended.


Isaac LOVES Smores so that was his theme for his cupcakes. Incidentally, they look yummier than they taste but I don't think the boys have any real distinguishing palates when it comes to sugar.


His friend Noa and Koa gave him the most amazing lei made from gummy worms. They will be moving to Hawaii soon so we were glad to catch them.


Isaac has been begging for a Nerf gun FOR-E-VER! We give only one gift to try and keep things simple so his wish was granted. Hopefully the targets we set up for him will fill his need and he'll not go for anything living or moving ... otherwise I fear for our pet rabbit and Keila!