Monday, October 17, 2016

All moved in!

I love this pic of Buddy and his half-brother Max playing. They are so funny when they play. :)

We are in our new house! It's been a bit of a crazy week, but we are LOVING our new abode. Going from four months of RV living to being in this incredible house is something I can't even explain in words. We all have been feeling like it's not real. Elijah keeps asking if he's in a dream. Sammy told me that he feels like we're visiting friends. We have spent the past two days getting our things out of storage and unpacking. We have sooooo much left to do, but it's more than livable and we're loving it. None of us want to leave and when we have to go somewhere we get sad!

Quick update on last week's urology visit.. The dilation Elijah had done in June has done the trick so far! This is great news and something we didn't expect. We have had to cath Elijah daily (just takes a few minutes) and will continue to do that for forever if it means we can avoid another surgery.

Although this is a super exciting time for our family, it IS a big change. Elijah particularly is having a rough time adjusting to being in a different place and sleeping in a new room ALONE for the first time since he was three years old. Behavior has been really really challenging, but things will settle down once we adjust.

Elijah has a hearing check-up tomorrow with ENT and both boys have Wednesday through Friday off school. Yay for more home time! If you want to see us in the next few months, you'd best come visit because prying us away will be tough. :)

Wednesday, October 5, 2016

Cardiology update and corn maze pics!

I could just squeeze these two cuties to pieces! Elijah has had a few rough days (ugly at times), but due to a double dose of very sad news at school we are keeping things in perspective. Last week the dad of one of Elijah's classmates died and last night the mom of one of Sammy's classmates died. That's hard for adults to process, so I can't imagine what kids must think of all of that. Sammy especially is so sensitive and takes this sort of thing to heart. We'll have to have some talks in the next days and weeks.

We checked in with Dr. G this week for E's standard six-month cardiology check-up. Everything checked out good! Function and pressures are fine. His valve is in the "mild" range for stenosis for the first time since his last OHS, but that isn't alarming. Dr. G said that when his next big growth spurt happens, we'll likely need to discuss surgery. We go back in six months! Wooo!

The weather in Minnesota has been GORGEOUS. We've been spending every morsel of time outside that we possibly can. Last weekend was one of the most perfect weekends of the entire year. After our Saturday morning routine where one boy goes to boxing class with Dan and the other comes to the club and coffee shop with me (I've been LOVING this quality time with each boy), we made our yearly fall trip to the corn maze! There have been years that we've been bundled up in boots, hats and mittens, so this was quite a nice experience. We hit all of our usual spots, but the favorite was (as always) the corn pit.

The boys love the parakeet house and Sammy thought it was so cool that a bird swooped down and landed right on top of his cute little head.

Then FOUR birds decided that Elijah's treats were best.

Both boys enjoyed the farm animal area more than ever before. It is so fun to watch them notice new and different things every time we come. Elijah was especially drawn to this cow. He kept walking back to him and just gazing deep into his eyes. There is something about him and animals. There's a connection there for sure.

I'm heading out of town for a conference tomorrow that I'm super-duper excited about. I'll be in Austin till next Tuesday and honestly, one less body in our RV for a few days is probably a good thing. Living "normal" life in there is making us all a little bit nutty. We are ready to be in a house. ALL of us are ready ready ready. I fly back home Tuesday at noon and house closing is at 4:00!

Have a great rest of your week and weekend! My next post will be written from our new abode!

Thursday, September 29, 2016

Pretty sunsets, needle-induced tears and large stuffed animals

Did I tell you that I have a new photo assistant? He's a super hard worker, he has a great creative eye and he can easily make people laugh. His name is Sammy! I brought him with me to a photo shoot last weekend because he was wanting to earn some money (this boy is so responsible with money). He took his job seriously and worked hard. He's super awesome on the other side of the camera, as well!

We have been staying at a new campground this week and it's been an experience. It's beautiful when you look past the other RV-homes! We've seen some beautiful sunrises and sunsets.

Buddy has been nutty since his surgery a few weeks ago. I've threatened to give him away a handful of times, which always results in the boys begging me to change my mind. We love our dog, we love our dog, we love our dog.....

On Tuesday I brought Elijah to Children's for a blood draw (ordered by his new Genetics doctor) to take a more thorough look at his genes and possible resulting genetic disorders. This is something we've done before but detections can be made that weren't possible waaaaay back in 2008. E hasn't had a blood draw in a while, so I didn't know how it would go. He was anxious leading up to it, but super brave through it. I saw the needle go in and the nurse began digging for the vein. I know how this feels. It's awful! Elijah began BEGGING her to please take it out, please stop hurting me, as tears streamed down his face. All I could do was hold his shoulders tightly, tuck my head behind his back, pray and of course cry. It was minor in the grand scheme of pains he has endured, but it was awful. Maybe because he's been through so much, I could barely handle it. He bounced right off the lab bench and smiled after the band-aid had been placed on his arm, but my tears wouldn't stop. I cried all the way to the elevator, through the hospital, to the parking lot and halfway back home. Elijah kept reminding me that he was fine, that sweet boy. Oh, I also cried through the entire trip to the hospital gift shop (which I partially blocked out), where I purchased two large and expensive pillow pets for E and S. Watching my boy endure pain = new stuffed animals! :)

I will be curious about these results. There is apparently more thorough testing that can be done, but our insurance won't cover it at this point. Hopefully soon!

Monday is Elijah's 6-month heart check-up with Dr. G. We always approach this appointment with trepidation, as we never know what to expect. We've had a good streak, so I'm hoping it'll continue!

We head back to Dan's parents' house tomorrow until we close on our house. We are all super excited and so ready to have a home larger than 200 square feet. We are ITCHING to get in and get settled.

Thanks for peeking in!

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!