Being Home

I haven't posted in awhile. I think about this blog all the time, and what I want to post, and all that's happening with Lively, and all that I'm feeling and thinking, and it seems like a daunting task, so I don't post anything. I know that there are lots of you out there looking for updates, and I'm so happy that you care enough to want to know about how Lively is doing, so here's the brief version.

Eating, or rather, lack of eating, is the big issue right now. Lively continues to get 99% of his nutrition through his naso-jejunal tube. I am pumping for him as much as I can either fit in or stand, and still not making quite enough to meet his "daily requirements," which is, as I think I've mentioned, about 40 ounces a day. Beginning about 1 week ago, we had to start using a little formula, which I hate. I'm trying to minimize it as much as I can. I'm taking fenugreek and blessed thistle (9 to 12 capsules daily, each!) to try to augment my milk supply, and Pete says the fenugreek is making my skin smell like maple syrup. It's supposed to. I guess I should be glad it doesn't make me smell like hard-boiled eggs, or anchovies or something.

Because Lively's eating is not improving (we don't know why), we have a consultation with a surgeon next week to talk about putting a semi-permanent tube directly into his stomach, through his abdominal wall. We all hate the idea of this, and the last thing I want for him is surgery, but the ideas behind this procedure are this:

• The tube in his nose and throat may be bothering him so much that he doesn't want to eat.
• He keeps pulling out the tube (twice since we've been home) and it requires a trip to the hospital interventional radiology to have it replaced. 
• Lively's eating is not getting any better, and we need a longer-term solution.
• It may improve his vomiting.

In an effort to try to coax him to eat, I recently experimented with giving him a taste of chocolate icing. Annie had chocolate for the first time when she was around 2. But the occupational therapist says we should make eating pleasurable for him, so what better way is there? Here's a photo of Mr. Chocolate Lips.

I realize you can barely see the chocolate. I didn't give him much, and he wouldn't take much, but look how happy he is! We have not been successful with other foods, and I feel like he can't survive on just chocolate.

So seizures . . . I'm really just not sure what's happening. Pete and I occasionally see some eye-rolling, but it probably happens one time a day or less. Lively is doing a new thing where he touches his thumb on his right hand with his index finger on his left hand while holding his hands out in front of him, and his arms appear to tremor when he does this. We don't know what that is. It could be seizures, it could be some sort of motor problem, or it could be nothing. He's going to have another EEG, MRI, and appointment with his neurologist in the next few weeks. Currently Lively is only taking one anti-seizure medication (Keppra). I am hoping not to have to change his seizure meds again, so here's hoping this one works.

Um, ok, weird lab values. I think I mentioned before, when we were in the hospital Lively's liver enzymes and triglycerides were all very elevated for some unknown reason. They returned to normal, and we rechecked them last week and, you guessed it, they're elevated again. No one knows what this means or what to do about it. We're going to repeat them soon, maybe next week.

Clotting: We saw hematology this week, and Lively had another ultrasound of his leg where he had the blood clot last month, and it appears to be completely gone. This means we got to stop the Lovenox (blood thinner) which is great, not only because it was a twice a day injection, but also because at one point, Lively was getting 17 doses of medication a day, so any decrease in that number is very welcome.

Lively also had some labs drawn as part of his thrombophilic (blood clotting) work up. We weren't able to get all the tests because Lively is so chubby right now, it's hard for the phlebotomists to get much blood from him. However, his Protein C activity level was low, which is perhaps another risk factor for clotting. I'm not exactly sure how to interpret this test, and I don't really want to try right now, so I'll pass along whatever that means when I know more.

Last but not least: development. Lively is getting physical therapy twice a week, and occupational therapy at least once a week, sometimes twice. He's getting stronger in a lot of ways. He rolls over well now, and we're working on reaching out for toys, and Pete and I definitely see some progress. Sitting is still very hard for him, and that worries me quite a lot, because he was able to sit unsupported holding a toy in front of him before his most recent hospitalization. This is Lively on Easter. Check out the chins. The skin on his cheeks is stretched so tightly, it looks like he's about to burst out of it. He looks so uncomfortable, it's hard for me to look at this photo, but I like that he's sitting.

He can't sit up like this anymore. His wonderful physical therapist says this isn't unusual in a guy with so many medical issues, but any step back right now is terribly discouraging.

Annie is doing ok with all this. She loves her brother, I'm very happy to report, and she's very gentle with him, and loves to give him hugs and kisses. She's getting sassy, which is part reaction to what's happening in our family, and part being 2-going-on-3. She has stopped going to bed easily at night, which is a great source of frustration for Pete and me. We've tried lots of "sleep-training" methods, and haven't found the right one yet. Argh.

Last weekend Pete saw a drum set at a garage sale and brought it home for Annie. She loves it. It's very loud. Very, very loud.

This photo is a little blurry, but captures her attitude quite well, I think.

I'm going to end with my new favorite photo. I take almost all of these with my phone, because it's much easier to post those photos than it is if I use the good camera, so this is a little out-of-focus. It's easy to see that Lively is the sweetest boy in the world when you look at this picture.