All Hail the Tonsil Troll!

The tonsil troll took something away from my beautiful, chronically strep-infected child; as of 10am yesterday, Hannah is tonsil-less.

Everything went very well, as long as I try really hard not to remember Hannah's reaction just before, or immediately after, her surgery! :)

As soon as we took her back to the pre-op room and she saw the stark white, metal-railed beds lined up in an impersonal row practically glowing in the harsh fluorescent light, she freaked. And you could forget about removing her clothes and wrapping her in the sheet-like hospital gown, no matter how many cute little yellow ducks were swimming all over its water-blue expanse.

She's definitely no fool, y'all.

Craig and I, along with the nurse, held her down to squeeze thick, goopy valium-syrup into her uvula-vibrating mouth, pushing her bottom jaw against her top every so often and blowing in her face like lunatics to try and get her to swallow. I thought her straining neck veins were about to explode out of her skin like a cable fraying and busting loose.

I desperately fought my paranoia, hiding behind a level-headed facade, while I secretly wondered if this outburst wasn't ominous, somehow.

Another nurse came and whisked her away in foreign arms and I kept picturing Hannah as she clung to this woman like a koala in her delirium, not knowing what awaited her just beyond the double doors and down the hall.

I didn't even get to be there for her final descent into gas-induced slumber. Now you'd think I wouldn't be quite this melodramatic given my own medical history of like, two dozen surgical procedures, including the one Hannah just went through, and my other two children's history as well, but, well, we've been going through a lot lately and that's my excuse. Emotional overload!

I wrung my hands in the waiting room and waited, gradually relaxing as I prayed that I'd done the right thing. Amazingly, time flew by and suddenly the doctor was sitting next to me, telling me she was doing great, surgery went fabulously, and he had removed some very ucky, quite-infected tonsils. This, despite the fact that she'd been on her 8th day of antibiotics.

He said with all things considered - the relentless infection in her skin and the recurring strep - maybe she has an immune issue. Something to think about if she continues to get strep (yes, even without her tonsils). We're looking into some things right now I told him and he nodded, like that made sense. ?

Recovery was long and dramatic. Hannah took her time coming out of it, and her Oxygen Saturation dropped a bit, which didn't bug me until the anesthesiologist bustled in and insisted that the nurse put the oxygen mask back on her.

Hannah was not too happy with us. On the drive home, she kept drifting in and out of sleep, confused. We got her a frosty because she insisted she was hungry and she tried ripping it out of my hands, first demanding that I make it into a drink (!?), then claiming ice cream was all over her legs when it wasn't, and finally wrestling me for the flimsy yellow cup until cold white lava squeezed up to the top and splattered all over me, her, the seat and the door. Fine, I said like a petulant child myself, make a mess. Go for it.

So she bends over and tries to drink from the end of the spoon.

Part of me felt sorry for her, but the other part of me found this absolutely hilarious. Finally, something funny to laugh about.

Hannah was pissed; her head spins until her face is inches from mine and her features scrunch into each other like a cabbage patch doll's, eyes narrowed. Then she snarls Don't laugh at me!

Sadly, that only made me laugh harder.

I said DON"TLAUGHATME!

This came out in a rush, grating against the back of her throat, a deep, gutteral growl. I cringed. Craig started to laugh from the safety of the driver's seat. Okay, mister, you asked for it, I thought, reaching around the seat and slathering the side of his face with the slippery white frosty coating my hand. He took it well, considering. By the time we got home, my fingers were sticking together and I was grossed out and slightly agitated.

The rest of the evening, Hannah clung to Auntie Joan a lot, not really too into mommy or daddy, at first - kids can definitely hold a grudge and mine wasn't too keen on the fact that we had led her to the cause of her pain. Finally, she relented and snuggled down into my arms and we both drifted off in blissful oblivion, her mouth moving up and down like a rabbit's nose (a weird effect of surgery?). I loved this time, even though I was too zonked to enjoy most of it. :)

Today, Hannah is acting like nothing happened. The only hint occurred this morning when she claimed there was a frog in her throat. I've been constantly lurking, telling her to stop running, don't jump like that, and for goodness sakes, don't forward roll so your neck scrunches in on itself like an accordian - that can't be good for your recovery! Doctor's orders: no running or jumping for two weeks. Oh yeah. Might as well tell a fish not to swim.

So Hannah's back in the running - HA!; the weather is absolutely beautiful; the windows in my family room are open to a refreshing breeze; Hannah's best friend stopped by earlier to bring her a new care bear, movie and handmade card; as I type this, I can hear Hannah's reassuring post-surgery snore through the baby monitor (Hooray for mommy time!!); and the world is slowly, slowly spinning still. I guess it never stopped :)

Eczema, or Werewolf?

I feel like apologizing for my rant before I go ahead and get it out of my system. So if you're having a bad day like me, I'm sorry for the extra downer. 

First, we're trying to tackle Cohen's medical issues. He seems like he's getting sick again and I hope he handles it okay. I thought we could get further testing to follow up on the suspected diagnosis I mentioned in my last post, but NO! We are on hold people! Until when, you ask? Until people get their act together. This is not something to play around with and while I hope Cohen does not have what they think he might, I also want to RULE IT OUT. Immediately. Or as soon as possible. Instead we wait. We saw a geneticist, all right. But not one who secializes in metabolic disorders, which is what the hematologist suspects. And the only one in our area who specializes in said disorders is in between practices right now. although he's providing some basic consults over the phone. I am so frustrated. We are frustrated. In addition, the geneticist seemed more interested in our parents and siblings than in Cohen's siblings -- namely Hannah, who has begun to have some pretty major issues (again) and we are trying to find a link between the two. We went in to the appointment thinking maybe, just maybe, Hannah's issues might shed even more light on Cohen's and vice versa. If we're talking genetics, it makes sense, right? Well, we're just crazy parents so what do we know, anyways?

So our path to find Cohen help has gone like this:

Pediatrician to Developmental Specialist to Therapists to Opthalmologist to GI to Neurologist to Infectious Disease to Hematologist to Geneticist, and finally, hopefully, to Metabolic Disorder Geneticist.

And right now, Hannah looks like this:

Do you see this stuff? I mean, I know eczema can get bad and all, but she's actually trembling this morning, and there's blood all over the sheets from last night. What the heck? Can't people figure out what causes this? It's so painful for her and Cohen.

It's acutally oozing fluid, y'all. Like it has a life of its own down there in her pores.

And yes, we have her on anti-itch medication (my name for it) three times a day and we had her on steroid cream for three weeks, then stopped it because I know you can't keep slathering that stuff on, her skin needs a break. The DAY after I stop applying, it flares right back up to what you see above. What do we do? Yesterday, I actually tried applying some of her Aquaphor ointment (like vaseline, except more expensive, so why don't I just use vaseline then??? Who knows...) and wrapping her wrists and knees in Saran Wrap like burritos because, yes, she has the same stuff behind her knees and little puffy spots all over her legs and arms - even has it flaking on her forehead, behind her ears and on her eyelids. I'm going to take her back to the doctor and I'll probably feel like the idiot mom again but I'd say this qualifies as a "flare up," don't you?

I wish I could stop the pain. It sucks. I'm tired of feeling helpless.

And, well, on another note, I wanted to introduce you to Lizzie:

Her first night home and taking a bath upstairs, courtesy of Aunt Joan.

All done! Clean now and SANS smell, so I can stop snapping the pictures and take her from Aunt Joan :)
She's been a great dog so far, except she got sick and was hacking and throwing up a little bit. We already took her on her first trip to the vet, who thinks she picked up something before she got to us - "kennel cough?" - or maybe has allergies. She's on antibiotics now, in case. I can't believe it. I have another kid.
Sorry for the vent. Please pray for us as we continue our search for help and answers! We will be okay, I know it. I just wish it wasn't such a long road to a solution, treatment and relief!

The Difficulty of Naming Things...

So it finally happened and I caught this cold/flu bug. Can kids get it a second time around? The girls had it right after New Year's. I'm trying to be really careful because I don't want them to get sick again. Not fun!

New news on the diagnosis front. We have a possible diagnosis but it is not yet confirmed. We might know for sure sometime next week. We see the geneticist on Wed, so we should know more then, or soon after! Waiting is driving me nuts, but a few days is nothing compared to a few months, or at least that's what I keep telling myself :) I'd like to know what we're up against and what we need to do to help.

Since we don't know for sure, I'm not going to name it. At least not yet. But it is treatable, if it is what they say it might be, which is GREAT!

Kids are doing well right now. Cohen is toddling all around the living room - even trying to wadddle run!! - and is sleeping through the night in his crib! He is the first to sleep in his own room since living in our new house, and he's doing better up there than he was in the room with us - go figure! This is exciting. One down, two to go. Now if we can just get the girls to follow suit...

More news: we might adopt a puppy! A yellow lab with a little bit of something undetermined mixed in. A woman from the city was asking people from Craig's work if anybody would want a dog because they were going to be put to sleep soon. I'm nervous, but my aunt loves animals and knows how to train them so if it doesn't work out, she can take the puppy with her when she eventually leaves us (and this, I don't even want to contemplate!). We took Hannah to meet the puppy yesterday and she wasn't afraid like we thought she might be. She even giggled as she tentatively pet the wriggling body. The poor thing was so nervous it (she) kept sinking so low to the ground her belly touched the linoleum and she trembled a lot, but other than that, she seems very lovable, even wagging her tail for us when we pet her. We'll see. I always get nervous thinking about scooping up dog crap, but I've cleaned up my fair share of crap lately and it doesn't intimidate me like it once would have! :) I'm trying not to get the awww, wouldn't that be so cute! bug - ya know, the one that imagines everything fun and hygienic, with a loyal dog who plays nicely with the kids and fetches on demand, a dog who never chews on your stuff, never barks loud enough to annoy the neighbors, never actually needs expensive dog food to survive, never stinks of dirt after playing in the yard, and never actually pees and poops and then rolls around in it for fun - yay! -- I'm trying to go into all of this realistically, y'all!

The first time around as dog owners didn't work out so well for us, so this will be interesting... :) but I do think we have room in our hearts and household for another living being to love.

Craig made the mistake of telling Hannah to think of names. She wants Sarafina. Where does this name come from? I think it's a character on a Barbie movie, but I'm not 100% sure. And what made her think of this name when she hasn't watched Barbie in a while, I don't know. I could just see it, "Here Sarafina, come on Sarafina," or, umm... maybe not. We like Lizzie - don't ask me why! :) What do you think? Any suggestions? Should we let Hannah have her way? She insists so much I think she might actually call the dog by that name anyways, regardless of what we decide. Kids are so funny!

Change is Good

I am always nervous about change. Being in limbo unnerves me. I am about to switch Hannah's school but I don't feel as happy about the decision as I thought I would. Part of my confusion comes from Hannah herself, who usually cries when I drop her off at school lately, but said she wanted to stay there on Friday when I went to give our two week notice. I think this will be a good change, but, well, I hope she thinks so too!

We've been checking out some schools and I decided to go look at one that a mom at dance recommended. This place is great. The kids are testing very well and it is an accredited private school so Hannah could go there until 5th grade if we wanted her to. And the price is not bad either.

But I'm struggling with potty training. I ditched the diapers yesterday (yet again!) and she did really, really well - except for one accident. I have a hard time with the clean up. After years of it with my oldest, I just wanna scream when I find the surprise! I think she resists because she sees her older sister still wearing pull-ups and getting diaper changes. I hope she does okay because she really needs to in order to go to the new school. Wish us luck. We have two weeks.

And this morning, I found Jenna awake in the bathroom with her pajama pants around her neck like a long scarf, singing away without a care in the world, no diaper in sight. The smell led me to it, y'all. Not a pretty thing to wake up to in the morning, right? I think someone else might be ready to go on the potty soon. It's a very good sign that she's starting to realize she's got something in there and she wants it off! YAY!

This stuff is very, very expensive for us. Because Jenna is bigger, we have to buy the night-time pullups that end up pricing at a dollar per pullup. Then there are pullups for Hannah and Cohen's diapers. With diapers and wipes, we estimate $200-$250 per two week period. YIKES!

Can I just say that I hope Cohen is a potty-training GENIUS and learns very, very, quickly?! :)