I have got to start updating you more often. As it is, it seems I only find the time to do so when things are going poorly…and that’s not a fair representation of our lives. There’s also a lot of good, and a lot of happy.  A lot of blessed.  Nonetheless, I wanted to share an update.

Since arriving home on 10/17, the boys have been steadily improving. It may take them weeks to recover to “full strength” after something like this, but they were on their way up nonetheless.

Aside from the fact he is eating via NG, I would say N is himself. He is smiling, kicking, smirking, and back to his normal alert level. We still have the occasional big spit up, but it is infrequent enough. He is gaining weight well, and is up over 19 pounds!!! He seems to finally be gaining a little bit of strength back.

L has also been keeping down food well. Especially if you consider how far he has come from the 10/13-10/14 time frame when he couldn’t even tolerate medicine or small amounts of pedialyte. He had started to perk up a little bit more, and we had even gotten back to working on trunk control and assisted sitting a time or two recently. But alas…he had another set back. On Saturday night he had a seizure. Not an infantile spasm, which is what we’re used to seeing from these two. But a focal seizure, affecting his right side. We haven’t seen one like that in what seems like months. And we have never seen one that displayed that duration or speed. I patiently waited for 5 minutes to pass, but it did not stop or slow. For the first time ever, I used his rescue med. I gave him a dose of Midazolam nasally, and it stopped it completely within 5 minutes. He has been at varying levels of “ok” and “iffy” since then. He sounded good Sunday morning, and we even ventured out to church.  Never under stress. Never struggling to keep feeds down, or losing color, never a real fever.   But not quite ok, and eventually breathing abnormally.  Justin took him in to the DR, who helped order a chest x-ray and blood work.  L has pneumonia in both lungs.  I haven’t heard the severity.  This could be due to an illness returning, or it could be due to aspiration during or as a result of the seizure.  Regardless, the decision was made to get him to a children’s hospital.  This time, we have chosen to get them to our regular specialists, where their familiar neurology team is.  That will make it easier to adjust meds, and view this from the perspective of potentially being a neurological issue rather than a random respiratory issue.  

J is handling this one for now, and I am home with K and N.  K had a good evening and was in bed on time.  N is snoring beside me.  I was on the phone with one of the neurologists for nearly an hour this evening.  She understands treating the respiratory issue is priority 1 for now, but that I also have concern about where things have been headed.  I’ve been worried for weeks that we are starting to see some decline in L.  But it is nearly impossible to sort through what is an illness, what is over-medicating, and what is deterioration caused by Liss.  Either way, patience will be important, yet a challenge.  We will learn more in the coming days.  In the meantime, he is in good hands.

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