Sunday, April 17, 2011

Spring!

Spring has finally arrived! We may have a lot of rain all of the time in the winter but our summers are spectacular and, when it peeks through, so is Spring. We have three trees in our front yard that, in aggregate, form a large canopy of branches covering the better part of the yard. Since we moved in January, we had no idea what the tree would look like fully dressed. Imagine our surprise when we received this unexpected gift last week:


It turns out the gnarled branches are a cherry blossom tree! I was so excited! I know it is fleeting but I am soaking up every minute of waking up and seeing those beautiful flowers filling my window.

The boys took a later nap today so we took advantage of the late afternoon and played outside. They had such a good time playing in the grass. A hard part of Oregon with small kids is the lack of ability to spend a lot of time outdoors in the winter.

Charlie has had little to no experience in the grass and he just LOVED it.


Jack has been on strike from the camera lately. Today, he was so drunk with the experience of being outside that he let me take his picture. :-)


It was one of those perfect days. Even this evening, when we were making dinner and chaos reigned...Charlie was squealing, Jack was pestering...Jared was disciplining...I had this acute moment of feeling like this is it, this is what I've always wanted, this is exactlywhere I am meant to be.

Saturday, April 16, 2011

Tubie Pajamas

Here is what I've been up to today...


Making these...


Here is an "inside" view:


For most, this probably doesn't look all that exciting (and no, I didn't actually sew pajamas...those are courtesy of Carters). For me, this is VERY exciting. Since Charlie got his g-tube, he hasn't been able to wear zippered pj's or one-piece outfits because there is no spot to run his tubing out of. Not a big deal when you can buy snap-front pj's and just avoid one piece things. However, apparently, they don't make a whole lot of snap pj's in sizes larger than 6-9 mos and Charlie is approaching the point where he is outgrowing the 9 mo pj's. This has been vexing me...because of the tube and his age, two piece pajamas aren't ideal. Then I saw someone selling pj's with a plastic grommet (think the round holes in certain draperies) inserted creating a (large) hole to accomodate tubes. I thought that was a great idea except the hole was pretty big and it was inflexible plastic. My in-laws then suggested button holes and reminded me I had a sewing machine that did buttonholes. So, last night, I hauled out the machine. I should add here that I am a (less than) beginner sewer. After struggling to get the thing threaded, I followed every direction to make the buttonholes and...nothing. It just didn't work. I called my mother this morning who helped me troubleshoot as best she could from the phone and then suggested I take my machine into a sewing store. I did and promptly learned that despite my lack of skills, my machine was actually not working. I also learned it was a pretty bad machine and probably not worth the cost to fix it. Then, after explaining what I was trying to accomplish, the woman helping me told me she had a tube-fed granddaughter! So, we set about making buttonholes on all kinds of machines and quickly learned that most machines will not make holes big enough to thread the tubing with the clamp through without considerable struggle. Which landed me in front of a very nice, pretty expensive machine that could make buttonholes of pretty much any size. So...after negotiating the price and the store also taking my machine as a trade in (they wound up only offering me $50 less than the price I paid for it 4 years ago!), I took home the awesome new sewing machine that probably does way more than I will ever need it to. Oh--and I got an embroidery machine in the deal. So...I got home, set it up and in no time at all, had retrofitted all of Jack's old 12-mo pj's into tubie pj's!

I am thinking of selling them to other parents in our situation. I understand now why the grommet worked--because most machines won't make a buttonhole big enough to accomodate the tubing. But, I like how discreet and soft these are.

So, I am pretty excited now and also excited to try out my embroidery machine. Not sure how much monogramming I need but it should be fun!

Thursday, April 14, 2011

Sweet Success

We've had recently had some parenting success. Our sticker chart was working, for the most part...with the exception of the area we most hoped to see improvement in; that is, listening on the first try without a tantrum. Our original plan was that, after Jack earned 7 stickers (between any of the categories), he would get a small treat. After earning 14 stickers, he would earn a toy that we had purchased and set on top of the bookshelf so he could be reminded of what he was working toward. Well, after doling out many small treats and the big toy but still earning NO stickers in the listening on the first try category, we decided to revisit our approach. While bribery isn't my favorite parenting technique...well, at this point, we are just trying to make it through the day. And, have a polite child to boot. Day after day of poor reports from school, we decided to pull out the big guns and specifically target this one behavior. The "big guns" being chocolate. Yes, at three, Jack is a certified chocoholic.

So, armed with Easter candy, we told Jack he could earn a chocolate if he listened to his teachers without throwing a fuss or talking back. Every morning, we very specifically talk about how he can earn his chocolate. Well...we have now had 4 days in a row of positive reports from school. Even the director was surprised at how well he was responding to this. When he is starting to get a little out of control, she just reminds him gently that he has a chocolate to earn and he snaps right out of it. Hopefully, this method will also work when he is a teenager. Ha!

Tuesday, April 12, 2011

Where We've Been, Where We're Going

I want to start my return to blogging by doing a fast-forward replay of the last year, so that future posts are in context.

Since birth, Jack has struggled with severe reflux and these nighttime breathing events, which were generally attributed to the reflux. After medical therapy did not seem to be decreasing the frequency of these events (in which he would often turn blue), we were referred to GI specialists. They did a lot of tests and determined that yes, indeed, Jack has severe reflux. They also discovered he had a hard time drinking liquids and would often aspirate them into his lungs. There was concern about him aspirating reflux, which would make him very sick. They also thought the breathing events may have been caused by that. So, they recommended a surgery called a Nissen Fundoplication, which would make it so food and liquids could go down but not come back up. They also put in a feeding tube at the same time, primarily due to the risk of some side effects from the Nissen. The Nissen is not a small or inconsequential surgery. It was hard watching my toddler go through a painful surgery with a pretty long recovery time. It was equally as difficult finding out that the procedure failed within a week of having it done. So, six weeks later, we returned for round 2. Unfortunately, Nissen #2 also failed, which was baffling to our surgeon.

At the same time, when Charlie hit between 2-3 months old, he started to refuse to eat and his breathing became labored and he always sounded like he was congested, although he did not have a cold. He was a miserable baby. He cried A LOT, he never slept, and feeding was a nightmare. It could take us 3 hours to get a couple of ounces in him. It was a slow, torturous process of starting the bottle, him screaming and arching and choking and gagging and all over again. He also started having these breathing events. So, we went through a lot of tests and learned that he had a lot of the same issues, but a little more severely. So, he had the Nissen surgery and also got a feeding tube around 6 mos old. We were very surprised when, during our hospital stay post-surgery, that they took him off oral feeds altogether. We weren't expecting that and it took me a long time to come to terms with it. I still struggle with it. Charlie has not eaten anything by mouth since he was 6 mos old. He takes his feeds through his tummy and he wears a little backpack that continuously drips formula through his tube. I know that he wants to eat. He is our little vacuum cleaner...always scanning the floor for crumbs. It sucks. I wish I had a nicer term for it but it sucks. I am grateful for the lifesaving technology that keeps him safe but my mommy heart just wants to feed him.

A month after he had his first Nissen surgery, he had another (unrelated) surgery. It was a long summer. He also had a swallow study, which is where they look to see whether a child is aspirating when he eats. There was hope that the Nissen surgery may have helped in this regard. Unfortunately, it showed that it was worse, not better. On the study, it looked like the muscles were weak and just not doing what they were supposed to. Because these issues are highly uncommon and because we know had two kids with them, we were referred to a neurologist and a neuro-development pediatrician. There they did a bunch of tests and finally gave us a name for what was causing all of these problems: Worster Drought Syndrome (WDS). Worster Drought is very rare. It is a type of cerebral palsy. That means that it isn't progressive (meaning it won't continue to get worse) but they will always have weakness in the muscles that control the mouth, the tongue, the jaw, and the throat. Additionally, there are usually some mild gross motor delays associated with the condition, which we've seen in both of our kids (but mild!). The primary issues associated with WDS are speech difficulties, feeding difficulties, and reflux. In our kids, the feeding issues seem to be worse than the speech, although we have worked really hard on Jack's speech. It is the WDS that likely caused the two surgeries to fail for Jack.

In between all of this, we had a couple more surgeries, the bank Jared worked for failed, giving us a period of lots of uncertainty, we moved cities and Jared changed jobs...

When we got our diagnosis, I was pretty devastated. I could only think about the worst case scenarios and what their futures would look like. These things that we thought were temporary problems that could be fixed with a surgery were now permanent problems that could have wider consequences. However, I was blessed with a relatively sunny outlook and could only wallow in self pity for so long. :-) I realized my boys are EXACTLY how God designed them to be. I don't need to fix them. They are perfect how they are and while I, as any parent does, want to make their course easier, I'm also grateful for the opportunity we've been given to become stronger through these experiences. My boys are troopers, let me tell you. They take their challenges in stride and keep trucking along. They have not let these things slow them down (literally!) and they are a constant reminder to me of what what my outlook should be.

I realize this post is mostly filled with medical information and while our last year was filled with a lot of it, we did a lot of good living in there, as well.

So, that's where I've been the past 10 months since my last posts. In terms of where we're going...who knows? I've stopped guessing. This has been a great lesson in humility and learning Who is really in control. ;-)

I'm back...

Wow--it's been a long, long time. I haven't blogged in a long time because, quite honestly, I haven't known what to say. Our lives are so much more complicated, and so much richer, than I ever imagined when we first decided to start a family. I've been reluctant to share a lot of our past year because I don't want to give the impression that our life is only about health complications. But...this is our life and one thing I've learned from the past year is that other people's stories and experiences on similar paths have made mine so much easier. So, I'm going to try to get back in the swing of this.

I'm hoping to use this to chronicle my life as mother and wife, especially the peaks and valleys of our medical misadventures (as I like to put it!). I'm hoping that our stories can offer some hope to anyone in a similar circumstance who find their way here.

Right now, my biggest adventure is in parenting (ahem, disciplining) my three year old. Two went out like a lamb and three came in like a lion. My goodness, I feel like I have a whole new child. Jack has been really testing my patience lately and I have not felt like I have had some of my best parenting moments lately. We are currently trying a behavior sticker chart and trying to focus on rewarding positive behaviors. Our house was getting ugly with so many time outs. So, day three into the sticker chart and here is what it looks like. Yes, as you can seem, Monday was a rough day. Today was great--until bedtime. Any advice for surviving three?