Croup: Season 9, Episode 1 (Elijah)

You know those cycles Elijah goes through where things are just off? Yep, we're here again. I won't go into the gory details, but he is being awakened almost every night somewhere between 1:00 and 5:00 with tummy troubles, which is affecting sleep. I remember this same thing happening a few years ago right around this same time of year. Tummy affected sleep affected behavior affected school affected life affected tummy affected sleep and on and on. We've cut way down on his sugar and dairy intake and this seems to help a bit. One thing about our summer RV trip is that we did not eat as healthfully as we normally do, so I know that has played a role. I've been trying to be much more intentional about getting healthy food into our bodies.

Elijah was up with croup for the past two nights to commemorate the 2016 Croup Kick-off! Thankfully with the help of oral steroids it has been very mild. But present enough to make sure he doesn't get any sleep! Last night he was up at 2:00 with a mild barky cough so mild that a neb wasn't needed. I would have taken him outside for some soothing cool nighttime air if it hadn't been raining. I tucked him in and told him to go back to sleep and he did not sleep another wink. How do I know this, you ask? Because his bed is two feet from my bed and I listened to him move around and talk for the ENTIRE REST OF THE NIGHT. His croup was just fine at 7:15 when I finally peeled myself out of bed, but I kept him home from school so he could sleep off the rest of the sickies and get caught up a bit. We just woke up from a little nap and we're both feeling better.

All four of us have been fighting little sore throats and runny noses and coughs. Sick season is here! And to join in on the fun, Buddy has begun acting up like a wily teenager. Having been cooped up for 2 weeks after his surgery, I think he is DONE with it. Yesterday while I was trying to wrap up homework with the boys I noticed that Buddy was being way too quiet outside. Usually he sits at the door and whimpers if one of us isn't out with him. We peeked out to find that he had chewed the cupholders and a head cushion off of our two favorite lawn chairs. I was so. mad. I moved the chairs out of his reach and went back in to finish homework. TWO MINUTES later I looked out to see a gigantic hole that had been dug in my in-laws beautiful green front lawn. I just about died. I put him in his kennel and kept him there until Dan got home. I realize it's pointless to be upset with and ignore a dog who has tons of pent-up energy, but I was and I did. I threatened to sell him and the boys begged for me to change my mind. The jury's still out.

In the midst of tons of good, positive, big things that are happening for our family, some little things are working against us. It's one of those seasons where we have to work extra hard to overcome the little things. We are trying! Swimming hard upstream! We'll get there!

Have a great rest of your week! If you know how to repair lawn holes, stop by any time! ;)

State Fair 2016, dr updates and new digs!

Elijah's tummy has not been the same since the testing we had done at Children's last week. Tummy troubles have kept him home from school Friday and today. Things were bad Friday, better Saturday and Sunday and again at 3:00 this morning he was throwing up. The doctor we saw today thought it was a virus that has worsened with sugar. Today I didn't let him have a single bit of sugar and he's been so much better. Praying for a better day and SCHOOL tomorrow!

Yesterday he seemed well enough to make our yearly State Fair trip and he did great all day (uhh...till his began digesting the greasy, sugary food). We hit all our favorite spots, plus some. Pics are below!

E had an appointment with a Genetics doctor this morning. It's one that I'd scheduled earlier in the summer at the suggestion of Dr. M, our wonderful developmental ped. We haven't seen genetics since 2009 when Elijah was two and at that point they had done extensive testing and hadn't found an underlying issue for his congenital anomalies. Dr. M thought it would be worth another visit, seven years later. Advances have been made in science and other anomalies have popped up with him since 2009. Dr. S agrees with me that there is most likely an underlying genetic reason for everything. We will do a few in-depth tests in the next couple weeks. The REALLY in-depth tests are super expensive and aren't yet covered by our insurance, but the hope is that within the next year they will be. What is the point of doing this testing, you ask? Good question! If we do find a genetic underlying cause for his congenital issues, then we would know for other things to look out for (organs to keep an eye on, for example).

One of my weaknesses happens to be falling into pits of fear and becoming totally consumed by it. There was a two-hour period of time today when I fought really hard to stay out of that pit. Elijah's vomiting has worried me and then his blood pressure at this morning's appointment was 135/90 (!!). After that he got a BAD headache that lasted nearly an hour. He gets these occasionally, but they've never been so intense or lasted so long. I wrapped my arms around my writhing boy and cried and prayed so hard for relief for him. We thought the headaches could be related to his spinal cord retethering (part of last week's testing), but those preliminary results show no retether (both good and bad news). The high blood pressure is likely because of this little tummy bug as well as some mild dehydration (conferred with Dr. G's nurse about this, just to settle my nerves).

All of these things pressed fear down hard on me today. I had a moment at Appointment #2 as I stared down at Elijah's flip-flops while he was being weighed for the second time. There was a moment of clarity when I realized: I DO NOT have to take on this worry! My job is to take care of my boy and I've definitely got that under control. There's someone else shouldering the worry and it's so easy to forget about that and become wrapped up in total fear. We go in and out of these cycles of medical worry and unexplained symptoms and in the end they stretch but also strengthen us. 

Saving the best news for last, we very quickly became home owners over the weekend! The third house we looked at was THE ONE. All four of us loved it instantly. It's spacious, sits in a quiet cul-de-sac, has a huge fenced-in yard, space for our RV, a detached building that can be used for an art/photo studio and even a POOL! We placed an offer a few hours after viewing it and a few hours after that the offer was accepted! The house is on the older side, so we are praying for a good inspection on Wednesday and then we'll be in the clear. We're super excited! We'll move in mid-October.

Thanks for peeking in!

Quick Elijah update and SUPER DUPER EXCITING NEWS

We got a little more of the story today from Elijah's teacher and special education case manager. Apparently there is no possible way he could have been sitting at a table all alone at lunch, like I had imagined all night last night. I'm guessing he is feeling excluded in some way and that is the issue. We don't really know. Dan went along on a field trip with his class today and got a feel for Elijah's relationships with his peers. It's about what it's always been like. He does not know how to appropriately interact with kids he doesn't know very well. He SO BADLY wants to interact, but he gets nervous and mumbles and turns and runs away out of pure excitement. Put him in front of an adult or his bro Sammy and he does just fine!

We went to his school picnic tonight and he was so excited to see a few of his classmates. One little girl approached him and said hello. What did Elijah do? He ran the other way. I could tell he wanted her attention. BADLY. So I ran over and literally picked him up and brought him over to this sweet little girl. I said, "Elijah, TALK. Is this your friend?" She introduced herself and told me that she was in his class. I encouraged him to interact and finally got him to ask her, "Do you want to play?" They ran around for a bit and that made me happy. We will get there. Just like with everything else!

On a semi-related note, Elijah had to come home from school early twice last week due to an icky tummy and some accidents. He had been complaining of stomach pains last week, and had been having issues off and on since mid-August when we changed his diet. We took him to the doctor on Friday and had a bunch of tests done. We just got results back today and everything came back normal! Thank God! Now we need to figure out what is upsetting his tummy.

And now for super exciting news! A few of my heart mama friends suggested that we turn in a Make-a-Wish application for Elijah. At first I just didn't know. I felt some guilt since Elijah is doing so well and has such a great prognosis. I filled out the application and Elijah's cardiologist approved it without hesitation. We met with the Wish people and of course E won them over. His primary wish?? To go to a waterpark in Florida that he has been DROOLING over on my iPad for months. His secondary wish?? To go to his "factory." (Waterpark of America here in town.)

I got the call tonight. Elijah's primary wish has BEEN GRANTED. We will spend one week in Florida, at Aquatica (THE waterpark) or Disney or Seaworld or wherever. I am speechless. I am so happy. Our boy who has been through SO MUCH (and of course his awesome bro, too) will be SO HAPPY. I was sobbing on the phone and could not speak coherently. After the week we had with school-related issues, we decided that a school reveal would be perfect! Elijah is going to be so excited and it is going to be a total surprise!

Thank you so much for reading! Have a good night, friends.