Thursday, October 6, 2011

Quite a dude

Small warning: this might actually make you cry a little. :) Yesterday we went down to UVA to see one of the GI docs about the tube site. It had granulation tissue when it was first removed and possibly because of that is not closing up. Dr Barnes wasn't comfortable using the silver nitrate to cauterize the tissue without a surgeon looking at it. Here's why I love UVA so much. Dr Rogers was James's surgeon and he was in the OR. His partner, whose name I can't remember now (terrible of me) was somewhere in the hospital. We have all James's appts in the hospital clinic area. So, ordinarily, UVA's rules are that you need to see the surgeon who performed the surgery unless it's an emergency, which this clearly wasn't. Fortunately everyone knows us and knows how far we drive, plus Eve chose that time to scream her head off while James was crying in terror of white coats (more on this later). Basically, pity and reason won out. One of my favorite surgical nurses got it done. So Dr M (ok, it does start with an M) came in and while we are still not sure if just granulation tissue is the problem, or if his stomach lining is pushing tissue out (sorry if you're squeamish), the doc cauterized the tissue, sent me home with some stuff to continue treatment, and we will give it two weeks. So if everyone could say a couple of prayers that this works, we'd all appreciate it. The surgery is no big deal; it's outpatient; but I just don't want to put James through it again. And me too. :(
It's not unusual, by the way, for horse people to be sent home to treat their own horses with injections and treatments of all sorts. But it's more unusual, for obvious reasons, with children. But parents of kids that have been sick a lot have some sort of weird status with doctors. They seem to accept you as somewhat of a nurse. Which you are, but so often you have to fight through the red tape to get stuff done. Like, I know my kid has this and such, can I just get a script? But instead you go in for a pointless dr appt where they confirm what you know, you get the script you wanted, but you wasted a day of your life. Again, I understand there are lots of stupid people out there, but it's annoying when you're not one of them. I've said so many times how you have to find the right doctors and therapists and not to settle for anyone you don't like. When you find those right people, what ends up happening is that they trust you as much as you trust them. They listen to you and your instincts and you trust their decisions as the best ones for your child, because you work together. It doesn't happen that often, and THAT is why I love this group so much.
I mentioned White Coat Syndrome. I can't believe we have gone so long with James being so amenable to...everything and everyone. Probably because he was asleep for most of his treatments and also because he would truly feel awful or be in pain, and the doctors would actually make him feel notably better in a visit. But now he's scared and it's awful. You'd think when they are older it's a little easier because you can explain things, but the flipside is that they can too. So I have James absolutely hysterically crying and saying things like: I just wanna go home! Why mommy? I feel fine! I wanna get down. Please can I go home.
It was really terrible and there was nothing I could do but distract him by talking about random things, but anytime the door handle shook he would startle and cry again. But we finally get done and he sobs a thank you to the dr, because he's amazing, and we start our long trek back to the car holding hands while pushing Eve in the stroller and lugging our giant bag. It's at least a mile hike but it's a beautiful day so we're just strolling along and about halfway James stops and looks up at me and says, "Mommy? I love you, Mommy." I almost lost it right there. What a kid! He's so brave and good natured and I cannot wait to see the man he becomes!

Saturday, October 1, 2011

I promise this post won't make you cry.

That's for Whitney. Apparently all I do is make people cry on here, so just wanted to say that it's safe. ;) nothing has been cry-worthy around here in a while, aside from lack of sleep and a muffin top. Eve is great, James is great, we're all super duper. That said, it's also super hectic around here, but I'd like to think that's normal....ish. 3 years should be a great gap between kids since your three year old is most likely potty trained, feeding themselves, dressing themselves. Well, mine doesn't yet. Don't get me wrong, he will. But just like eating and chewing, he didn't learn the process in the normal progression of things, so it's hard to teach that stuff later. Truly, I had no idea how to even start, (enter fabulous OT here). Denise gave us some very helpful steps to get james on his way, which is great! He is now able to undress himself fully, which is fabulous and I'm not sure why, but such a huge help. See, it's like having two little infants when you are having to feed, dress, change, etc both of them. It takes hours to get out the door. Literally. And I know the are lots of parents with kids closer in age who deal with the same thing, but all I can say is, Bless Your Hearts. But we are getting there. :) At home James is usually nudie and has no potty accidents at all. he's awesome. And he's starting to learn the difference between pants with a diaper on and without, but I haven't ventured outside the house especially since everywhere we go is quite a drive. I'm so proud of all he accomplishes. I can't imagine how frustrating it is and he's such a good sport!
Feeding himself is going really well too. He's wielding a fork with great style and is even spooning himself applesauce. That's a new one too: applesauce. I haven't given James anything spoonable in a while. The spoon was the enemy for so long, I did away with it. Worked a little with a spork (and who doesn't love a spork?). And interestingly enough, applesauce is widely disliked by feeding patients. It's very gritty and gets stuck all over your mouth. He used to make awful faces if he ate it. But when were in Dallas last, my mom had some and I just wanted to see what he would do. He loved it! Very exciting stuff and has given us some more variety. But, he wouldn't close his mouth around the spoon since he didn't want anything to touch his lips. I happened to be going to see Jenny for a checkup the next day, and after working with her the one time, he is not only spooning it himself, he completely closes his lips around the spoon and is doing better in that regard with all foods! Jenny also gave us a plan to work on more deliberate control of the food in his mouth so I'm hoping he will become a more well rounded chewer. :)
Eve is wonderful also. She just over there months and weighs about 14.5 pounds. She's busting out of 6 month clothes. Hilarious. Because shes so big and mature looking, I sometimes forget how young she is. But she's still just a little baby so all her stuff is pretty normal. She's not a great daytime sleeper, because I think she's so darn alert and interested in everything. She doesn't want to miss out! She seems rather sensitive to light and noise, much more than James was. Blackout blinds are on order. She doesn't like a pacifier anymore (so sad), so nurses herself to sleep which is fine since I'm here but I will feel kind of bad for a future babysitter. My big girl is also teething right now, which is amazing. She drools a ton and is chewing on whatever she has and we had three very miserable nights. Since she's usually a pretty good sleeper overnight, I was sad and scared. ;). Honestly, I took her to the dr. Well I did think there might be something wrong with her ears. We just saw whoever was available, so since she was not our regular doctor who knows our whole story, well, I'm pretty sure she thought I was crazy. It's not the first or last time. But fortunately the nights are slowly returning to her usual. And she's just about the happiest little chubber you've ever seen unless she's in her car seat, which she loathes. Sigh. You have to understand that we drive at least half an hour to go most places, but at some point she'll get over it. She just doesn't like the restraint so you better
keep the car moving to keep her happy. She's a very opinionated little girl and seems to communicate very clearly. :) as long as we all do as
she says, nobody gets hurt. I can't wait to see what her future bring!!
Until next time, we'll just keep on keepin on!!!