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Tough Love

A quick update: Leo had his MRI this morning, and it all went well. We got to hold his hands and be there when they put him under with the anesthesia. Although it did take them four tries with the IV because of all his lovely baby chub. He enjoyed the long hour and half nap in the MRI machine (finally a nap without interruptions from screaming 4yr olds, slamming doors and dropped pans etc) and came out of it slightly groggy but still with his usual sweet smile. What a tough dude! He has had several seizures tonight, but they did mention that sometimes the drugs can lower the seizure threshold in kiddos for a little while. Hopefully tomorrow he will be back to 100% and no seizures. Although the helmet wearing gets more serious, (took a break from it today) with the hours getting longer. In five days we need to work up to the full 23 hrs.
I know everyone is very interested in the results of the scans, and I am assuming that we will get a phone call from his docs in the next couple of days. As usual, the techs are not allowed to say anything! So we need to wait until the docs get to it. (We will post more when we get the info.) We are so glad that we where able to finally get this done, for better or for worse, and hopefully this will be the last procedure for a while! Leo is always full of surprises, but I certainly prefer the non-medical ones. While we were sitting in the hospital cafe, our lunch sharing the tabletop with the ward's buzzer, I realized that it will never get easier. Signing those forms, walking away from your baby when he is totally dead to the world, and then just waiting, and waiting, trying to stay occupied even though you can't help glancing at the buzzer every couple of seconds. Even though the MRI is not a big deal, not like his previous surgeries, it was still hard. It's terrible how inadequate you can feel in those situations. As a parent, you know exactly what to do for your child, how to make them happy, and how to keep them safe. But in these situations, you have to be step aside, you have disengage and let the professionals take over because in this instance, they are the ones with the knowledge. All we can do, is just keep vigil, pray, and trust. But gosh is it tough, every single time.


  1. Thank you so much for the update! Your entire family are such troopers. We love you all so much.


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