Home again, home again, jiggity-jig

The weather here has gotten beautiful this past week or two. We were expecting to be incarcerated to our hospital room, and Linc to his hospital bed hooked up to monitors like the last time we were there, so the few days before our hospital stay Linc and I spent quite a bit of time outdoors. Here is a pic and a video.






Also, I know Linc shouldn't be getting ice cream until he is 1...but I figured with all of the hell he has been going through...I would let him have a little treat. Here is the result...



He loved it, of course!

We made it home from the hospital Saturday evening. Things went as well as can be expected with a 3 day hospital stay. Andy took the first night shift, and I took the second. The nights were awful. Our room was a double room, and the baby on the other side of the curtain had had G-tube surgery the day before we arrived. Poor little thing was pretty miserable and her alarms were going off all of the time. Needless to say, we did not get much sleep. The days however were a lot lot better than the last time we were admitted to the hospital. Linc did not need to stay attached to any monitors during the day so we took off to the play room, the outdoor play courtyard, and the cafeteria whenever we got the chance. That was pretty fun.

Linc was a little trooper with the injections and all the poking and proding at his hospital visit. We were admitted to the hospital on Thursday morning around 9am. He had all sorts of tests done during the day, chest x-ray, EEG, bloodwork, urine dip, TB screen, to make sure that he was free from infection. The ACTH is an immunosuppressant, so they had to make sure he was healthy. He had the first injection on Thursday evening. The ACTH injections are a gel, so they take awhile to go in. Andy gave the one the next morning, and I gave the shot the next evening. I hated doing it, but Andy doesn't mind, so from then on, Andy gave the shot and I hold Linc down and comfort him during and after. It kinda sucks because we have to continue to do it 2 times a day for the first week, then 1 time a day for the second week, then if all is going well, we scale back to every-other day for the third week...and so on...

As for how the treatment is affecting him...well he seems to be improving seizure-wise. He is having some side effects from the drugs. His appetite is increased, he is MUCH crankier than usual, and he has elevated BP, which we have to get checked 2 times a week at the pediatrician's office. So on we go...

Here is the hospital bed/room & our little cutie. That chair in the background was where Andy or I spent the nights.







The video shows the new skill that Linc picked up just this week. Hitting and banging toys together!! Go baby go!

Here is our chunkster earlier today. Look at that cute little backside!

I will write another update when we know more. Continue to send us positive vibes! They are much appreciated!! :)