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!!

Saturday, June 18, 2016

Molting

I am amazed at the way EVERYTHING is changing in our lives right now. I feel like we are caterpillars, just totally changing from one creature to a completely different one. I remember reading somewhere that every seven years human bodies basically transform into completely different ones because the cells have all regenerated. That is us right now. We are on the verge of complete regeneration.

We have had some major developments occur in the past few days and weeks. Dan lost his job on Thursday, which was a shock but blessings are already coming from it. Today we SOLD our house and we are super excited about that. Another huge thing is happening on Monday and I'll report back about that next week!

On Friday Elijah started horseback riding through an incredible organization that mentors kids with disabilities. Going into it, he wasn't so sure. I heard a lot of "I don't want to do this!" and "This isn't going to be fun!" (add some whining to those comments..) His mentor started with having him do chores. I was not sure how this would go, considering how difficult it is for me to get him to put his shoes on. He did chores on their farm for an entire hour! WHAT?! And willingly! For the last half hour, he learned how to lead Trixie the horse and also make her stop. He was a natural! When the session was done, he said, "That wasn't so bad, Mom! I think I'd like to go back!"


The sad part is that we are going to have to take a chunk of time off from horseback riding because we have something else to do first. Elijah will attend two more sessions and then be back in the saddle in August!


Our little jockey! :)


Thanks for peeking in! More soon!

Wednesday, June 15, 2016

Goodbye to kindergarten and third grade!


Since my last post, the boys have said their good-byes to kindergarten and third grade. I cannot beLIEVE this year is done. What in the world just happened?! Look at how grown up my little Sammy looks now!

We are so thankful for so many things from this school year, which is probably why it seemed to go so fast. It was EASY, especially compared to the previous two years. Both boys had amazing teachers, made friends, made tons of memories, went on field trips and adventures of many kinds and learned a ton. I swear Sammy is destined to be a mathematical genius and I cannot believe some of the equations he conjures up and solves. Both boys made tons of progress in so many areas this school year. We are so proud of them!

Elijah got his catheter from last week's surgery removed on Monday. It was a piece of cake taking it out and once he realized how "free" he felt, the look on his face was priceless. "I can swim?" "I can climb at the park??"

We found a PCA who has started coming to our house and helping to keep Elijah on track this week. She is great! I greatly appreciate the help. I think the boys are adjusting to the "no-schedule schedule" that summer always brings. It is nice not having so much structure, but it is also bad for Elijah as he thrives on that.

This week and next, Elijah has appointments with SIX different specialists for check-ups. One of those appointments came up a bit unexpectedly after the surgeon last week brought up the possibility of Elijah's spinal cord possibly being re-tethered. He had a tethered cord repair when he was 2 and we've always known it was possible that it could become tethered again. When she asked if he has experienced headaches or leg pain, Dan and I froze a bit. Both of those symptoms have popped up intermittently over the past 6-9 months with no explanation. So next week we will bring him in for an MRI which will tell us if his cord has indeed retethered. If it has....ugh. That first recovery was a toughie. But on the other hand, it could be the reason that potty training has dragged on and could also be an explanation for the strange random leg and head pains.

We've had a handful of showings on our house, but no real interest yet. We're praying hard for a sell within a week or two! We'll see what's in store. In the meantime, we are trying to make the most of our early summer weeks. We are making lots of trips to different parks. Tomorrow we may venture over to the pool. The boys are very excited about that.

I'll end with Sammy's most recent math problem he presented me with. On the way to an appointment yesterday he said, "Mommy, what is 6,400 plus 6,400?" In my head I was thinking, Goodness, there's no way he could figure that one out. I asked what he thought the answer was and he said, "Let's see... 4+4 is 8 and 6+6 is 12, so... 12,800!" !!!! Seriously?

Thanks for checking in! Have a great rest of your week!!

Monday, June 6, 2016

Urethral Surgery #3


We are settled back in after a day at the hospital. As always, we experienced the hospital time warp where things went really slowly yet oddly fast. When we checked into our room this morning I was overjoyed to see our FAVORITE anesthesiologist's name on the board. Dr. A has taken amazing care of Elijah during some of his biggest surgeries, so I had to refrain from hugging him when he walked into the room.

The surgeon today was a cohort of Dr. R's, so not our usual doctor. Elijah kept referring to her as "Dr. R's sub." :) The surgery went smoothly and quickly, but we got news we weren't expecting. The doctor thought that despite intermittent cathing (which we'll have to do daily for the next six months), this is just a patch. Within a year or two Elijah will need a much bigger surgery that sounded like a pretty big deal. One step at a time! First we have to get him through a week of being cathed and we will take it from there. We will also pray for another miracle!

He was SO brave today, even with the "scary mask." We got him a pack of Pokemon cards immediately afterward as a reward for his bravery. He was SO groggy when he woke up that he could hardly form words and he kept asking the same questions over and over. Once we got him up and moving he improved quickly. By the time we got home he was requesting a grilled cheese sandwich and tomato soup (fave comfort foods). He ate endlessly and I even caught him in the fridge devouring cottage cheese straight from the container. :)


We are praying that the cathing goes smoothly at school for the next few days. We have communicated with the school nurse and she is going to help him "drain" 3x/day, which is a huge blessing. If needed, I can go in and help, too. It really is amazing how secretive they make cathing these days. No one will ever know what's going on unless Elijah spills the beans. :) And great news for him! He doesn't have to use the toilet nearly as often! :)

I have to say that on days like today it sure does help to have a faith in God. SO many times today, I just deferred to Him. I trusted his promises and let Him hold all of us. We are feeling strong, confident and faithful and that has nothing to do with our strength.

I'll end with some hospital-related funnies. All of the below occurred after Elijah had taken Versed (the pre-surgery med that alleviates anxiety)..

Dr A asked if he was going to do Kung fu while they tried to put the mask over his mouth. Elijah held up Pikachu (Pokemon stuffed animal) and said, "No, but you better watch out for THIS little fella!"

A doctor asked him if he was nervous and E answered yes. The doctor asked what specifically he was nervous about and he said, "Whatever this thing is that you're doing to me."

And when Dan put on a gown to take him back to the OR, Elijah said, "Dad, you're a pretty lady! You should put on make-up!"

Sunday, June 5, 2016

Happy SIXTH Birthday, Sammy!

Happy HAPPY 6th birthday to our sweet, sensitive, kind, thoughtful, organized, creative, deep-voiced, smart, FUNNY little Sammy. I cannot imagine our family without you. You are one LOVED little boy and it's hard to believe that six years have passed since that first time we heard you cry-growl. I love you so much, my Sammy Jammy!


I think it's safe to say that Sammy had a great birthday yesterday. We spoiled him rotten. He requested a strawberry cake with strawberry frosting and fresh strawberries on top. So guess what he got! The birthday boy gets what the birthday boy requests. :)


Almost every boy in Sammy's kindergarten class was able to attend the party. The gift opening was particularly interesting (MADNESS!). It made my mama heart happy to see him running around and happily playing with his classmates. They are such a close bunch. Their teacher loves Sammy so much that she even made an appearance!


Here's the kindergarten boy crew! Plus a few cousins and Elijah's bff. :) LOVE THIS PIC!


Sammy my Jammy. I ADORE you. I love when you request mama snuggles. I love that you intensely love your family and that you request "MMMMmmmm!!!!!! SNUGGLES!!!!!!!" often.


My four boys and I are in the midst of crazed packing, purging and planning. We will have some big news coming up in the next week or so.


Thank you so much for checking in! If it is on your heart, please pray for Elijah as he will be having surgery tomorrow morning. Pray for: no anxiety in the OR, a successful surgery (the first two have been Unsuccessful), minimal effects from anesthesia and a quick trip back home. Thank you!!!