Thursday, September 22, 2016

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! ;)

Tuesday, September 13, 2016

Neuropsych and IEP updates

We had two BIG meetings in two days. Yesterday Dan and I met with Elijah's awesome neuropsychologist to discuss results from recent testing. Dr. M asked to see Elijah back before fourth grade because significant changes occur in the brain right around this time. The testing showed similar findings from the last round that took place at the end of first grade. His verbal skills exceed visual by a lot. He is still a verbal communicator and learner and struggles with visuals. The good news is that he has made gains in both areas, but there is still a large gap between the two. He still has major deficits in self-awareness, organization and executive function.

Nonverbal Learning Disability is still an accurate diagnosis that describes his challenges well. Dan and I were amazed to learn how much the testing revealed that he retains. His brain retains literally almost everything that goes in, but getting him to explain it or "prove" that he knows it is the challenging part. It takes a unique strategy administered with persistence and consistency to reveal all that he knows.

There is a test Dr. M gave him that had such cool results. He showed E an abstract picture that contained various random shapes that were all connected. He let Elijah set the picture in front of him and asked him to draw a replica of it. A typical brain would look at the collection of shapes and make a plan (I'll start with the big rectangle and I see that there's a big X going through the middle; now I'll draw the triangles on the sides, etc). Elijah's brain sees a chaotic mess, so he drew something that looked somewhat like the picture but it was disjointed and with no order. Dr. M removed the picture and 30 minutes later asked him to draw what he remembered of it just from his memory. Elijah drew a couple individual shapes that weren't connected and looked nothing like the original drawing. THEN the really cool part.. 30 minutes later Dr. M showed deconstructed parts of the same picture to Elijah one at a time along with trick parts that had NOT been a part of the picture. He asked him to identify the parts he remembered being in the picture and he got 22/24 correct. Amazing! The results of this test tell us that he retains MUCH more than he is able to express.

Coincidentally, Elijah's annual IEP meeting was this afternoon. I was so glad to have fresh words from Dr. M in my head to relay to his teachers. We reiterated everything he told us about how to create a successful learning environment for Elijah and even shared his 18-page report with them. This was one of the easiest, smoothest IEP meetings we've ever attended. His classroom teacher and case manager had "the look" of understanding after Dan and I talked for just a few minutes. Last year and the year before I remember talking until I felt like crying and looking up to see eyeballs glazed over.

We explained that he is a VERBAL learner and that he needs to understand the PROCESS, not the problem. Immediately they began formulating a plan to create verbal and written scripts for him while he's at school. YESSSSSS!!!!! This is what we've been trying to get his educators to understand since that first round of testing! Such relief.

I've been a bit on overload thinking through all of this. Processing information is exhausting! :) Buddy is healing from his little surgery and is super needy. We are all so ready to move into our new house. And we STILL haven't received results from Elijah's day of mega-testing in August. In my gut I know all is well or I'd push. We'll get results for sure at his next urology appointment in early October. That's all for now! Thanks for peeking in!

Wednesday, September 7, 2016

A Letter to My Sweet Sammy

Dear Sammy,

Today isn't your birthday or any other special day. It's just a random rainy day in September and you happen to be on my mind. I visited your first grade classroom this morning and it always surprises me how excited I get when I see you. I had dropped you off at school only thirty minutes before, yet seeing your sweet self reading a book on the carpet was the highlight of my morning.

I always tell you how lucky I feel to be your mom and the other day when I said that, you replied in a typical thoughtful Sammy way: "If someone else was my mom, would you be jealous?" I totally would. I know I'm partial because I am your mom, but I'm grateful that I get to be around you so much because it's just so nice. Not only are you deliciously cute, you are also thoughtful, considerate, kind, complimentary, sweet, creative, clever, funny, witty, smart and snuggly.

Sometimes you will use a word that is well beyond your years or you will say something so thoughtful that I can hardly believe it just came out of your mouth. A few days ago you asked me to solve the math problem 1+1. When I said "two," you said, "Nope! The answer is Jesus, know why? Because Jesus is always the answer." Then last night you began worrying about tornadoes because this is something you worry about a lot (proof that you're my son). You asked me if there were a tornado nearby, would you be able to grab a few favorite things before finding safety? Then you said, "No, never mind. I won't need to grab anything because Jesus is all I'll need." I love that these truths are in the forefront of your mind and that they comfort you.

I want you to know what a gift you are, Sammy. Not just to me, your lucky mama, but to so many people. You are a good son, brother, student, grandson, friend, cousin and nephew. You light up everyone's life with your thoughtful words, cute lisp and generous snuggles. You complete your brother, just as he completes you. You and Elijah complement each other in such a special and unique way. Even teachers at school notice it. Yes, you have your daily "brotherly" moments, but I absolutely love the bond the two of you share. It is precious, rare and so wonderful.

I know you sense that sometimes Elijah needs extra attention from Daddy and me. Instead of getting upset about this, you help us out. There are times when you offer help and there are times when just being a good boy is the most helpful thing. I notice your patience and grace and I want to make sure you know that we see that.

For your entire life, you've been coming along to your brother's various appointments and therapies and you've never complained about sitting in another waiting room or taking another ride in the car. I think you've always known deep down that this is just how things are meant to be for our family. I want you to know that you are just as important as anyone else, Sammy. Elijah needs things that you don't, but you also need different things that he doesn't.

You are LOVED. Jesus loves you so much, Sammy. Daddy, Elijah and I adore you and you are Buddy's favorite pack-mate. You are a gem of a little boy and it's so much fun watching you grow into the person God has in mind for Sammy. I love you, sweet boy!

Love, Mom

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!

Thursday, June 23, 2016

Medical updates and goodbye for now!

This post is bittersweet. It is a hello and also a temporary goodbye. Elijah has had a handful of medical appointments in the past few weeks, which I'll do a quick update on..

Urology: We are cathing him daily in high hopes that he will NOT need an extensive reconstructive surgery. We're praying hard for the cathing to work. We will check back with Dr. R in August and go from there.

Developmental pediatrics: We have stretched E's current Strattera dosage out for a loooong time. Behavior has been gradually getting worse (the past few weeks have been pretty crazy), so we are upping the dose starting tomorrow. Pray with us for improved mood and behavior soon! Dr. M also suggested a re-visit to genetics to get a handle on the reason so many things have surfaced in the past few years.

Neurology: We will be scheduling an MRI for August to see if E's spinal cord has retethered.

Pulmonology: Severe croup continues to be an issue with Elijah, but it does get better with each passing year. Still, though, we need to have emergency croup meds on hand just in case. I ALWAYS love visiting Dr. K because he appreciates our sense of adventure and values us as people and that means so much. And of course, he takes amazing care of our oldest boy.

Now for the FUN! As of next Friday, our new residence will be THIS beauty! Our house SOLD, Dan lost his job and we are hitting the road!

We will say goodbye to our home on July 1st, when our RV ("The HQ"...named by the boys) will become HOME for us for a while! We are all super excited for this journey. Life has been stressful and so crazy leading up to this point. I cannot WAIT to be on the road with my beautiful boys. I apologize if I haven't explained the journey thoroughly here, but you can find details on Pip and Ebby!

See you back here late August! Till then, check in on social media or on Pip and Ebby!!