Monday, August 29, 2016

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!

Wednesday, August 24, 2016

The Day of Tests

After Elijah's most recent urethral surgery in June, a doctor expressed that perhaps we should check into the possibility that his spinal cord has re-tethered. Since we are still dealing with potty issues AND since he occasionally experiences leg and head pain, we all agreed that it was worth exploring. And apparently cord retethering is fairly common. We set today aside for a handful of tests and although it was only the third day of school, we felt we should get it out of the way. I completely underestimated the time and energy that the day would require of us. I thought we'd be in and out in a couple hours, but we were there for seven and it felt like more. 

Elijah was presented with nitrous oxide (no sedation, thankfully) and just about had a panic attack when "the mask" made its appearance. He thought for sure that equaled surgery and our poor boy melted down. It took all the coaxing Dan and I could muster to get that mask on his face. Once the gas did its job he calmed way down as we talked non-stop about waterparks and water slides and oceans and mountains. He had to be cathed for a few hours and for a handful of different tests that checked his bladder function. We won't get full results until we visit with Dr. R, but we gathered that things seem to be mostly fine on that front, minus the fact that he has a small bladder.

The MRI at the end of the day was a bit of a fiasco. At the last minute the nurses realized that the stents/coils in Elijah's chest (put there during heart surgeries) had not been "cleared" to be near an MRI machine. I knew everything would be fine, but appreciated that they wanted to be positive before moving forward. The MRI was done on E's spine and was intended to rule out the re-tethering. The actual test was a bit stressful for Elijah, even with ear plugs AND a very cool movie that he watched through a pair of glasses. We won't get results from any of the tests for days or even weeks. We are glad to have today behind us!

As always, this boy never stops amazing me. He walks into that place not only willingly, but with a big smile on his face and a skip in his step every single time. If I were him, someone would have to sedate me or carry me in kicking and screaming. We did A LOT of sitting around today and he was so patient and his positive attitude never wavered. We had a chunk of spare time before the MRI and at this point Dan and I were feeling so proud of how patient and brave he'd been, so we brought him to the hospital gift shop and got him Beavy the Beaver. He LOVES this guy. He sat for the rest of the time and talked to him as if the beaver were truly speaking back. "Mom, Beavy didn't understand what you said. Can you repeat it, please?"

Elijah was practically begging for bed tonight he was so tired. We are all going to sleep well! Thanks for peeking in!

Monday, August 22, 2016

Back to school AND blogging!

We're back in business here on our family blog! We had an amazing summer and now the boys are back in school, Dan has officially started his new job and we'll be looking for a house without wheels soon. Elijah and Sammy both seemed to have a great first day of school today, minus some very sad news that Sam received at the end of the day. His best friend Ryder will not be coming back to the same school this year. Sammy has been talking ALL summer about how excited he was to see Ryder again, hug Ryder, play at recess with Ryder, be silly with Ryder. He is crushed. His sweet little sad face tonight just about broke my heart. We had lots of talks about how this is a part of life and how he will make new good friends.

Elijah saw his bff for the first time all summer. It sounds like they were super happy to see each other again. We are so excited to see what first and fourth grades will bring for our precious boys. Sammy has his same wonderful teacher from last year and Elijah's teacher seems great! He also has a new special education case manager (his fourth one since starting kindergarten), but she worked quite a bit with him as a para toward the end of last year and knows him pretty well. Overall we feel really good about everything!

Dan has been out of town for work for the past week and things have been a bit extra challenging since he's been gone. Buddy came down with some sort of puppy virus, so he we have been quarantining him while temporarily parked in Dan's parents' driveway (who happen to have a tiny new puppy). It has been quite the ordeal keeping him out of the puppy's sight because if he sees the pup (who happens to be his cute little half-brother!), he will want to play. Buddy has been sooooo needy and whiny and in my opinion depressed. I feel like I have taken better care of him in the past week than I have my boys! Every time I turn around he's sitting and staring up at me with a pathetic but sweet look on his face. I brought him to daycare today since he's been on meds for a week and hasn't coughed since Friday. He was EXHAUSTED when I picked him up. Mission accomplished! And Dan gets back tomorrow, so relief is on its way!

If you didn't follow our summer adventure on my other website, you can read more here! All I'll say about it here is that it was indescribably incredible on so many levels. I feel like it's one of those experiences that I want to write in greater detail about, but the words will take time to come out. We are both happy and sad to be back home. Coming back to Minnesota was almost confusing for me. This is "home" but we now drive our home. In many ways it's nice to be back on home turf, but it's more sad than happy that we're not on the road anymore. I have been dragging my feet about purchasing a new house because I don't want the stress that comes along with it and I'm secretly hoping our storage unit full of SO MUCH STUFF burns to the ground. We haven't needed any of that stuff and I'm not sure I want any of it back. I've felt lighter and better without it!

I hope to continue posting on here once/week minimum. I hope you'll stick around!