The day job (boo.) and hanging out with Liam (yay!) and going to gym more often (half-yay. I love having gone but hate having to go.) have made me too tired to blog of late. Its time to do a proper update of things here in Prince Liam’s castle.
Liam has been doing very well since returning from our latest little visit to the hospital. He quickly returned to normal once home and though it took a few nerve wracking days for him to poop he has been excelling in that category lately. It’s reassuring since we were so scared of scar tissue forming from an early bowel surgery and this helps us believe that it was a virus of some sort.
His seizures have been very well managed. We’ve been down to one every other day or so. Of course he just had one while I began typing this paragraph. He knows what I’m typing I guess. Anyway, the duration and intensity have been much less severe lately too. He gets his monthly RSV shot in the next few days though and since that can effect the effectiveness of his seizure meds we will have a few weeks of more seizures again. Its the cycle we live.
Breathing, for so long our most intense issue, has been very stable. [Every single one of you must now knock on wood for having read that! I probably shouldn’t have written it.] We’ll need to schedule a “tune-up” visit to the hospital so that we can do a vent assessment and a bronch to check out how his airway is growing, It’s probably about time to get Liam a bigger trach now too. So next month its back to the hospital for a few days. This time it will be much easier. Its the emergency hospital stays that get to you.
Liam’s strength and head control have been improving steadily. His work with physical therapy and daily exercises with Mom have Liam progressing nicely. At playtime he is more engaged with the toys and whoever he’s playing with. All great steps and we are extremely proud of our little man.
I guess that’s the rundown on all things Liam but it all sounds a bit too sterile. He is not a patient but a little boy and he is doing just fine. With all those teeth he’s got now we have learned that Liam loves having his teeth brushed! He goes crazy for it. We are lucky that he does too as many kids who are intubated as long as Liamwas grow a pretty strong oral aversion. His acceptance of pacifiers and the toothbrush is especially encouraging since Liam has never regularly eaten by mouth. We hope to be able to introduce some solid foods someday and so this is a good sign.
Karin is doing just as well as Liam. She continues to amaze me with her patience for the constant phone calls. Insurance Companies, pharmacies, doctor’s offices, various state agencies, being Liam’s Secretary is a full time job ( I know I say this in nearly every post but it bears repeating). The gym has been a welcomed little daily break for her and she continues to help motivate me to get there every day. Today was the first of a new weekly tradition of having Mommy Days. From now on, Wednesdays will be mommy and her boy days without nurses or appointments (if they can be scheduled that way). We have been trying to get the scheduling right with our nursing company for this for a few weeks now and it has finally started. Karin and Liam both need a day of break from the scrutiny of nursing during the day. A day to be by themselves as mother and son all the while waiting for Daddy to come home. Normal family stuff. Sure we have always had the weekends off and this doesn’t change our overnight care three nights a week but this is just for them time. Today they watched movies and took naps and played on the floor and had a quiet day during the snowstorm.
Me? Well not much going on with me. I’m working and coming home to try and spend my own private moments with the Boy. I get my time with him at night after work and after Karin goes to bed but 3 nights a week we have a nurse with us and I look forward to my weekends. I spend a lot of time with Liam while he is asleep. His schedule doesn’t really jive with my work schedule but that’s ok. I make sure to get my moments of play each day. In a way, its what I have always done; the same was true for all of our hospital stays. In the hospital for each of our long term stays his medicine schedule had him getting some serious sedation four hours before I went to work and just as I left work so he was pretty sleepy for both of my long stretches with him. We’re pretty good at holding hands while he sleeps.
I’m pumped that Lost is back. I haven’t seen any good movies. For some reason I find myself listening to a lot of music from college days, a weird little time travel trick. I’m reading Heller’s Catch as Catch Can a posthumous collection of his short stories; I’m underwhelmed and a bit disappointed in it given how much I love Catch-22. I can’t say that the stories themselves are bad but they are a bit boring. That’s it for the what I’m watching reading and listening to portion of our show and unless there are any questions from the audience I will be heading off to bed. Enjoy the snow everyone. It’s here you might as well enjoy it.