Monday, August 30, 2010

Bible 101...Emma style

At dinner tonight, Emma said that she wanted to talk some about God. My heart swelling largely with pride at the desires of my middle child, I began with some "refresher questions" to the upcoming spiritual conversation.

Me: Okay Em, who did God send to earth to save us from our sins?
Emma: The police?

Hmmmm, I thought we were a bit further than that in our knowledge...

After some small courses on the basics, I decided another go at it:

Me: So, what was the name of God's son?
Emma: Hmmmmm...
Me: It starts with a J.
Emma: Jack?

Friday, August 27, 2010

Sweetie Pie

As the parent of a young child with complex issues, you learn little cues about your child that no one else knows. For instance, I know that when Nate's face swells just a little and his eyes gain grey circles underneath, it means that he is struggling somewhere in his body. This finding usually always makes me stay on alert for any other cues to stress or illness in his toddler-sized body. Sometimes the culprit manifests itself...sometimes he returns to normal after a few days. But there is always something in and around his eyes that cue me that the little guy isn't up to par.
This learning of secret, unspoken cues has been a skill we have been working on over the past couple of years as I learn more about my son. It isn't for just those who struggle more regularly than others though...there are clues that make me aware that the girls aren't feeling well too. Emma's glossy-eyed look (nicknamed "sick eyes") and Abby's unusual weepy emotions are what alert me that they aren't quite themselves. Through multiple experiences, we get to "know" our children better by paying attention to their unique alarms. It's a special part of being their intimate closeness that most others do not share with your children.But then, as in the case with Nathan, there is so much that I do not know about him. So much changes with him over time, and we are constantly having to partake in a good amount of guess work when it comes to knowing him better. So you can imagine my excitement when he has recently been able to tell us how he feels, what he feels, when he feels it, etc. This last bout with his belly has been tough to witness at times, as he verbalizes so much better now. His poor belly bloats so badly as the day wears on, due to slowed motility in his stomach. He routinely comes to us saying "I have a mosquito bite in my belly" while clutching his stomach in grimaced pain, or telling us that his back hurts, while putting both hands on the small of his bowed back due to the worsening pressure of his stomach. While playing guessing games to figure out what he is feeling is tough enough, it is definitely harder to hear him expressing his pain.On the flip side, we are learning more about how he feels about certain aspects of his daily life with medical equipment. He tells us which meds he likes and which he hates. He tells us which doctors he wants to visit and which therapists are his favorites. At the end of each session with his aquatic therapist, he looks at her and says "Bye-Bye Sweetie Pie" in his most adorable flirtatious voice. He definitely gets points for that one.
One of my more eye-opening experiences with his expounded vocabulary and ability to describe how he is feeling happened this morning. After being off his O2 for about 10 minutes right before taking Abby to school, I put him in his car seat and placed the cannula back on his head for him to set into his nostrils himself. He looked at me with his big brown eyes and said "Thank you for giving me my oxygen. It makes me feel so better." Had he heard me talk about that at some point in the past? That due to the fact that he has never fought the oxygen from that first day he got it a year ago is probably due to the fact that it does indeed make him feel better? Or is he genuinely able to feel the difference and express that now? I don't know. But I sat there in awe at how old he sounded and so thankful that he is able to help us understand him more each day. He's a real sweetheart, this kid, and I am so very thankful that God has decided to lend us this strong and tenderhearted son. He's my sweetie pie.

Wednesday, August 25, 2010

Wordless Wednesday: Becoming more independent

Nate has been practicing pulling around his new rolling backpack containing one of his D tanks of oxygen. He can pull it for really short distances before he topples over or can't hold it anymore. That's a start, since it is pretty much as big as him in the first place. He needs it for times when he wants to venture out a bit by himself in dr. office waiting rooms and Abby's school and such. He keeps trying to pull the big tank with him, but it is just too heavy, so we'll try wheels instead. So far, it's working fine if he isn't too tired.

Monday, August 23, 2010

Ist grade

My baby girl entered 1st grade today. Though not as emotionally taxing as her entering kindergarten last year, it still made me a bit sentimental today to know that my Abby is now a 1st grader. I'm guessing the same emotions will erupt each year as we watch our children grow older.

Tomorrow morning, I have the privilege of partaking in an IEP meeting for the Absters. I never thought I would mention "IEP" when talking about Abby. But you see, the smart cookie has gone through 3 rounds of testing over the past few months and been approved for our school system's gifted program. I have to admit that I knew she was pretty bright, but I am amazed that she got into the program as a first grader. The really neat thing is that we get to meet with her enrichment teacher and develop an educational plan for her...goals to be set regarding her education and everything. I'm excited for the kiddo.

Friday, August 20, 2010

Last bit of summer reading

This week...the official last week of summer vacation...has been one filled with daily playdates and trips to the pre-schoolyear land of insanity known as Target. The university is starting its fall semester on Monday as well, so our little college town is about to burst at the seams right now.

We had our long awaited "Meet the Teacher" day at the elementary school today. A long line of parents met at the front of school to view the list of students under each teacher's name. Parents were shouting to one another over heads of people with "You've got "so-n-so". We've got "this one"." and so forth. It was quite a chaotic and fun atmosphere. It's funny how these types of events still give you butterflies and excited anticipation, even as parents.

I could not be happier with the teacher Abby was assigned to this year. Having been at the school for a year and trying to be as involved as I can, it is nice to know the teachers beforehand. Abby's first grade teacher is literally a perfect fit, and it also helps that so many of her little friends are in the same class, including one of her best friends. 4 of the kids in the little "kindergarten playgroup" we seemed to have formed last year are in her class, which means that we moms are all good friends as well. In fact, a few of us had a mom's night out last night, so it is fun that some of our kids are together this year as well.

We dropped by and gave hugs to last year's kindergarten teacher on our way out, and it was so great to see her again. I have to admit that I have missed hanging around the school. It's amazing the relationships you form with the many teachers and workers. We are all VERY excited about this coming school year.

Tuesday, August 17, 2010

We ain't in Texas

The little guy is doing a lot better, though I am once again reminded how slowly it takes for him to get back to normal. Nate is still having a problem with his stomach motility...his stomach bloats so much in the evening and he is constantly complaining of either belly pain, being tired, or something or another. He clearly does not feel good. We have a new appt with GI in a couple of weeks to gather up a new plan when these "stomach shut downs" happen. We are used to them happening when he is sick, but it is discomforting when it happens out of the blue. I'm thinking the energy demands of the summer heat have finally caught up with him...

Regardless, he still is a cute stinker (read that: cantakerous little cuss), especially with the new digs he loves to wear:

Friday, August 13, 2010

A curious child's paradise

Back in the spring, we started making plans for a camping trip in our pastor's camper. The kids have been looking forward to it for so long, so after Nate's therapy appt on Tuesday afternoon, the chitlins and I packed up and headed north a couple of hours to spend the rest of the week with our pastor's wife and son at a campsite by the beach.The campsite was absolutely beautiful in a "roughing it" sort of beauty. Huge moss-covered live oaks draped over the palmetto lined roads. Signs were posted warning against feeding the alligators, cats (as in big forest cats), raccoons and possums. The nearly deserted beach within walking distance to the camper housed numerous orange nettings, each signaling a bed of sea turtle eggs. The entire scenario just screamed "Florida".
The kids instantly fell in love with the campsite the moment we arrived. All three spent the first couple of hours running up and down the bike paths and trails, chasing numerous armadillos and catching baby lizards. Nathan gathered sticks and rocks and ran around like crazy. I can't remember the last time I saw him so excited. He was in every boy's paradise, and he clearly didn't want to miss a thing (except of course when breaking from the adventure to play his beloved ipad).We spent a good portion of the time riding bikes around the campground. The girls had their bikes, and I rode the three-wheeled bike that belonged to Sister Sherri so that I could carry Nate on my lap. I literally fell in love with that was so comfortable and fun to ride. One morning, the kids (who wake up way before anyone really should) and I took an early ride to the beach to let John and Sherri sleep in peace a bit longer. We came upon a couple of park workers digging with their hands in the sand, searching for something. It was then that we saw the amazing flipper prints leading from the water to the spot where they were digging, signaling a sea turtle's assent to the shore to lay her eggs while we were all sleeping.
The trip was just about perfect...except for one thing. Poor Nafey boy has had a terrible time over the past few days with slowing stomach motility. He was barely eating when we left, but he was still doing amazing. I didn't think twice about going, as he had excellent energy and seemed to feel just great. However, he threw up whole undigested food Tuesday night...twice. After a nap the next day, he seemed to feel great and wanted to join his sisters who had been at the beach for some time. We went (hindsight is 20/20, as I now know that this was probably not the best idea), and he loved it. The kid truly does love being at the beach...jumping over the waves, trying with his might to kick the wave out of the way before it splashes him to pieces, sitting in mini-swimming pools that older kids make for him...he loves it. But really, they all love the beach, much to my beach-loving approval.But the beach seemed to do a number on Nate's already weakened system. He took a nap in my arms, but he was clearly struggling after a little bit of playing. He had a small fever when we returned to the camper and vomited whole blueberries that he had eaten numerous hours earlier. His stomach was just not moving much. The little guy drank enough that night to make to feel more confident in staying and just taking it easy the next day to help him regain some energy and hopefully get his stomach working again.However, the next day was worse. He couldn't walk without staggering, and he couldn't sit without support. But it was when he couldn't hold a popsicle and kept saying "It too heavy" when I realized that we needed to head home in case he needed some IV fluids to get him over this hump. Emma, clearly torn on whether she should stay or come home with me, decided to come with us after all. Abby, in search of more adventure of ghost crab catching, beach, and the water park, decided to stay.It was so hard to leave a couple of days earlier than planned, but I felt so much more comfortable with Nate being closer to our hospital. It still shocks me how quickly he can decompensate. Thankfully, the little guy rebounded a bit at home last night and was able to eat a small amount of food and keep it down. And today, he is doing great...tired and the crankiest little cuss I know, but he is hungry and eating some. This period of slower motility has left him almost 2 pounds lighter at 23 pounds, so I am hoping he can regain that nice cushion of weight rather quickly again.It was a short trip, but it was fun while it lasted. The unpredictability of this disease sometimes robs us of the moments we plan, so it sure does help to enjoy every little ounce we can squeeze out of these times.

Monday, August 9, 2010

The end of an insanely HOT era

Abby's last t-ball game was last Thursday. While I can go on and on about how darn adorable all of those kiddies were in the uniforms chasing after the same ball and trying so desperately to remember to run to first base after hitting the ball, the main thing that comes to my mind when thinking back on the past season was...I'm amazed we didn't all melt in the fiery inferno we call summertime in Florida.
Now, I do try to see the sunny side of most situations, but I do believe my "sunny side" of this one was sweated off by about the second practice. Let's just say that baseball in August in the jungle is not really such a bright idea. Nate and Emma missed most of the games and practices, as Jay and I took turns staying home with them. It was just too intense. Aside from that moaning and groaning, Abby had a great season! She started out, eh, not so great...being nice here. But she ended the season in the top half of hitters and fielders...a remarkable difference in talent from the first time she put on a glove not so long ago.
She really enjoyed the season as well. The gal would routinely ask us for after-dinner batting and fielding practice so that she could do better in games. I love that about her...her desire to keep at something until she is comfortable with it. It sure did pay off in baseball.
This season hopefully prepared her for next year when she can play softball for the first time. Now, she understands the game better, and I dare say that she is purty darn good. Plus, she had a great time with all of her friends...and she learned about the importance in replenishing electrolytes along with fluids. Sports...always a learning experience.

Friday, August 6, 2010

Semi-annual bribe your kids day

My weapon of choice, a Canon 40D. The prize for patience, good attitudes, and non-cheezy smiles: popcorn and an Icee. Deal.
I took the kidlets to the stadium in town yesterday morning to take their summer pictures. I was getting a bit bored with locations around the house, and I knew that the campus shouldn't be too terribly crowded right now...give it a couple of weeks, and it will be a mad house. I love our city in the quiet and non-trafficky. The kids did great this time around. In fact, there were no stern faces or sighs of exasperation or harsh tones coming from yours truly. I would say that due to all of this, it was probably the best shoot I have ever had with them. Let's just say that photographing your own children when they are fully aware of all your tricks is not an easy task.
I mean, it took me sticking the lens cap behind my glasses and yelling out "Argh Matey!" at a decibel that would put some lawnmowers to shame to merely get all three of them to even look at me in the following shot. Obviously, they were still not amused by their ridiculous mother's antics. However, the guy whose stealth footsteps brought him within ear shot of the scene was amused.
All in all, it was a productive and fun outing. We finished fairly quickly and before it got too warm in the morning. Nate handled the heat really well, and the girls had minimal complaining. I'd call that quite productive. And we ended up with some pretty cure pics to boot. At least good enough for some popcorn and an Icee.

Wednesday, August 4, 2010

Wordless Wednesday: Tuckered Out

Tuesday, August 3, 2010

Fun for the whole famdamily

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