MRI without Sedation

This kid. We’re SO proud of him! He just completed a brain MRI without any sedation/drugs! They only had to do 2 retakes during the 50min period bc he moved a bit but was super still otherwise! I was planked over him on my elbows, crouched inside with him, holding his hands and his beloved stuffed dinosaur to keep him calm. My arms fell asleep after 15min but this was so big for us that I did not dare to move!

fullscreen-capture-12232016-114627-pm-bmp

You’d think from this photo that it was all fun and games, but it was far from it! It was actually our 2nd try bc he sobbed the entire time the 1st time, and even this time, he cried & screamed at first, but we knew he could do it if he could just get over being in that room. It did take a while, as expected, and the tech kept warning us, “Just so you know, I’ve never seen a 4yo be able to do this without sedation” but patience was all we needed! They warned that the loudness would scare him more once the scan started but that didn’t bother him at all, it was just the sight of the machine. Daddy and B helped lighten things up, B was saying that he wished he could get the scan too and cheering him up from outside the room when K was crying. I even had my cousin (he’s a surgeon with rights at the hospital) come with us and he also helped lighten up the mood for K and helped reassure the techs to be patient with us.

Of course, after it was all done, he was all smiles, as you can see from the picture 🙂

Funny thing was, after we left the hospital, K asked for a milkshake. Bc he remembered that we promised him that at our first scan attempt, back in Sept! It was 10pm but we got milkshakes! And the dinosaur (he wanted to bring it last minute) had a sound component in it so I had to take it out and sew it up during the drive to the hospital so we can take it into the MRI room, and then sewed it back in on the way to get milkshakes. My cousin even got called in for surgery afterwards bc he was on call that day but we were so blessed that he didn’t get called in earlier but was able to stay with us the whole time. Daddy and I were both praying so hard the whole time, both shedding tears of joy and accomplishment during the scan–me doing so inside the machine, him outside the room while holding the baby. What a night, but everything worked exactly the way it should and turned out so well! This was HUGE, esp since the last attempt was such a major fail and we just didn’t want him going under general anesthesia so many times in just 4 yrs of life if we could help it (now 3x instead of 4). So thankful we had our entire family together with my cousin, all working together as a team to make this happen  It just reminded me even more so of love and family at the times when it matters the most–and how this is what this holiday season is truly about.

Best Christmas ever. God is so good!

Advertisements

Belated Update

I know it’s been so long since we’ve updated this blog. A lot of things have changed, including a new addition to the family! We’re now a family of 5!

But some things also have not changed and we’re very grateful for that! We’re still very active in the epilepsy community and Kaleb has remained seizure-free and also medication-free. We continue to support research for a cure for epilepsy and volunteer for efforts in supporting those with epilepsy as well.

Kaleb is still at his county preschool in a special ed inclusion program for kids with orthopedic needs. He will be having his IEP in a couple months and we’ll see what the next steps are. He’s doing really well and is learning to read too! He still receives PT, OT, speech, hippotherapy, aquatics and we also added gymnastics this year.

Life is busy but we’ll try to update this blog at least annually so that those who are going through the infantile spasms journey can see how Kaleb is doing in the years that follow the IS diagnosis.

In the meantime, wishing you and yours a very Merry Christmas, the happiest holidays, and a wonderful new year!