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!

Normalnormalnormalnormalnormalnormal

I just talked to a nurse who works with Elijah's genetics doctor and the results from all of the torturous testing from last week came back NORMAL!!! I cried a little bit after I hung up. I'm getting pretty good at the Relief Crying.

Here are the things that have been ruled out by this most recent testing:

- He does not have mucopolysaccharidosis (MPS) disease. MPS is a genetic disease caused by the body's inability to produce specific enzymes, which would cause cells in the body to not form properly which would cause serious damage to the body. No need to go on because it was ruled out!

- His growth hormone levels are normal.

- His bones all have normal formation. In other words, he is not a little person (or any form of that) like his ENT doctor thought he might be. This is the second time this very doctor has scared us with unresearched and incorrect thoughts.

THANK YOU, GOD!

So, in short (ha!), we just have a short little boy. Like mother like son, right?

Boat rides, family time, sugar, doors, old friends

We had an amazing weekend on the unseasonably cool shores of Okoboji, as we hung out with a ton of family we haven't seen in a while. On Friday afternoon we drove down to my aunt and uncle's house in Iowa for our yearly family reunion weekend. Our time went fast, as it always does, but it was so nice to see everyone again. I love my family.



Last week I had worried about Elijah becoming overwhelmed with all of the stimulation the weekend was bound to bring our way (based on our experience from the previous weekend), especially since we only see a lot of these relatives once a year. Now, after the weekend is over, I can say that I could not be more surprised with how things went and I could not be more proud of my little boy! Not only did he appear to be very comfortable being in close proximity with a lot of unfamiliar people, but he even seemed to enjoy it! I can't even tell you how many times I said out loud that I was amazed at how well he was doing. His comfort level in a social setting like this is huge and very very awesome.


This photo of "Amps" (Gramps) reading a book to Elijah is one of my favorites from the weekend.

One of the big treats from the weekend was that we got to spend time with my dad and stepmom, who we don't get to see very often since they live across the country. They gave Elijah some serious love, and Elijah gave it right back. I love watching my parents genuinely loving my son. There's nothing in the world like that. I only wish I could see it more regularly. They are still in "town" (town = within a few hours of us), so we get to see them again tomorrow and also for a bit this coming weekend. Our visit with them isn't over yet! Elijah just loves them to pieces. Last night after we got home I caught him standing at the bottom of the stairs, looking up and yelling, "AMPS?! AMPS?!" Sorry little man, they are still in Iowa..



Another big treat this weekend was discovering Elijah's love for boat rides. He fell into a super-sleepy-satisfied-relaxed daze on our Friday boat ride around the lake. On Saturday I took Elijah down to the dock and he started to hit, kick and scream when we passed by the boat without getting into it. A few others were heading out for a ride and he wanted to go, too. There happened to be a few open spots, so we grabbed a life jacket and got in for another ride. Again, Elijah was in a very satisfied daze and did the sign for BOAT throughout the ride. He didn't even mind wearing the life jacket, which came as a pleasant surprise to both Dan and me.



Some other cool weekend treats: We stopped by the famous Sugar Shack to satisfy my sweet cravings and add some meat to my thighs. I got to chat with my college art professor who I haven't seen in years and who happened to be showing his artwork at a show close to the Sugar Shack. I got to see a friend I graduated from high school with and who I haven't seen in years (this is kind of a big deal considering there are only 36 of us from the Manning High School class of 1993 roaming the earth).

And I can't write about the weekend without mentioning Elijah displaying his deep love for DOORS. My entire family got to witness first-hand how enthralling the opening and closing and examining of a door is for him. Thankfully Julie and Virgil didn't mind him playing with their fireplace doors all hours of the day. And I had to remove him from the dining room a handful of times because all he wanted to do was open and close the patio door repeatedly. As Dan and I often say, we may need to look into Door Therapy for our boy. "Hi! My name is Elijah and I'm obsessed with doors!" "HI ELIJAH!"


The weekend wore us all out. Elijah stretched out his arms for a little nap on the ride home.

It was back to business as usual this morning. I headed to work and Elijah and Dan headed to the hospital for the dreaded tests. I hate that I couldn't be with my little boy as he was getting tortured, but at least Dan was there to wipe away the tears. I hear the xraying was pretty awful since they xrayed just about every inch of his body and Elijah does not enjoy being held down. It's good to have those done! Hopefully we will get the results quickly.

I hope everyone had a nice weekend! Thanks for checking in on our munchkin.