Tristan is 2 months old today. To celebrate, we shot him up with diseases.

Maybe you're already choking on your kombucha as you search for a pen to write me some hate mail on the back of a Whole Foods receipt. Chill. I have vaxed and not vaxed and delay vaxed, and I've done the research and such. I am honestly pretty neutral either way, so do whatever you want.

Where it got tricky for me was a few months ago, when my friend Susan started blogging about the connection between certain vaccines and aborted fetal stem cells. As a pro-life parent, this is horrifying. Basically, there are a few stem cell lines that have been used to develop these vaccines for over 40 years. The good news is, some of the vaccines affected have an alternate vaccine. You can look at a pretty good chart here, although the graphics are a little early 90's.

I found out Tristan was scheduled to receive Pentacel today, which is one of those lines. Here's the deal... I have a lot of respect for medicine. My micro-preemies ALL had their lives saved multiple times by medical technologies and interventions. I don't buy everything a doctor says, necessarily, but I respect their knowledge and I hear what they have to say. So I was a little paranoid about going in there wild-eyed waving papers I printed off the internet.

I did print the charts, though. I tried to use 2 different websites, to have a little more credibility, and I explained up front that I had ethical concerns about Pentacel, a cocktail of 3 vaxes in one injection. Interestingly, she had heard of the stem cell controversy, and she said she had a chart in her office mapping which vaxes were connected, but she hadn't heard the Pentacel was one.

There were a couple of alternatives given on the sheet I printed: Pediarix, which was another cocktail, but no fetal cells, and the other option was individual injections of the 3. We had to go with the separate shots, since they didn't have Pediarix. (we probably could have requested it and come back, but I was okay with the solo shots). In the end, he got 5 shots instead of 3.

It gets a little trickier when he gets older, as some of the 1+ yr vaxes don't have easy alternatives. It was good, though,that this pedi really respected my making this decision on moral grounds. I think when we get to that age, she might not have an objection to us not using those vaxes. Regardless, we won't be getting them.

If you want more info on all this, there is a lot on Moral Outcry, just search "vaccines" on there, or Google something like "which vaccines have aborted fetal stem cells".

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Oh, and Tristan? TEN pounds 12 ounces. Developmentally perfectly on track. After his shots he cried for about 30 seconds and then tried to eat my shoulder, so, good.

It's 10 pm at Children's Mercy, and there are two of us in the elevator. It doesn't take more than a glance to know we share membership in the fellowship of mothers with really sick kids. She carries the weight under her eyes, so either it's pretty new or it's gotten worse. I'm an old hand, 31 with the posture of a 50 year old. I have been finding vending machines in hospitals for over 11 years now.

She wears socks with sandals. It's not so much a fashion statement as a necessity. She will slip into a dark, cold room and sit tentatively in a vinyl recliner until the beeping is consistent and her child's breathing settles into a pattern. When all is calm, or as calm as it will be, she'll slip the sandals back on her cold feet and slip quietly out, to find food or to make a phone call. 

Tonight, I'm the lucky one. We're here for something routine, fairly non-invasive, and he's healthy, all things considered. She carries the heaviness of a child's fear. I don't have to say anything, because our eyes meet and I understand and she understands. It hurts and it's beyond exhausting, and you can't know it if you haven't walked it. I know stepping out for a grilled cheese sandwich could suddenly, shockingly be goodbye, and so does she. 

We are mothers, and we will wait quietly for the bleeding to stop, for the crisis to end. We will find reserves of strength we never knew existed as we fight for our children. We will put them in the car and take them home with a surprised kind of joy, every time. We will be so, so thankful for today.

I'm writing this as I wait for my broccoli to finish steaming. That sounds über domestic, as it should, because I am all about the homemaking skills. OR, I bought a rice cooker/veggie steamer at Target for 8 bucks and the novelty has yet to wear thin.

So, this may come a shock to you, but as of a couple of weeks ago, the wee ones were not vaccinated. I decided when Toby was a couple of months old that he was too small to shoot up with multiple diseases, and that carried over to Brynn. So I never got them, although technically I'm not opposed. We tend to lean toward the medical establishment around here, based on all of our children's capability to be housed in a Barbie Corvette at birth. (note: not that we ever TRIED that) We're on the crunchy end of the spectrum with our parenting philosophies, with the breastfeeding on demand and the co-sleeping and the home-schooling and such. But give my kid a fever and I am applying Tylenol.

Anyways. R2's been vaccinated all over the place, and I always planned to start shooting my other kids up with polio and malaria as soon as they were 2 or so and then never got around to it. Adoption paperwork brought it back to mind, so we started.

This is good stuff, you know. You can't get this stuff just anywhere.

Today was the second round of shots, and Toby had really worked himself through the steps. "Okay, so first..." fingers on chin. "First we get the shots and it hurts for a minute. And THEN we get a sticker. And THEN we get ice cream." (repeat ad infinitum) Brynn was totally into it until they brought out the needles and she remembered what exactly a shot was. Then she had quite a bit to say, and it was all very sad.

Then Toby got exempted based on a paperwork snafu, and a very sad kitty whined all the way home about her SHOPS and her BANAIDS make her LEGS hurt and she DON'T WAN A PANDA STICKER ANYMORE.

Fudge popsicles eased her pain. I get that.

Today we saw the developmental and behavioral specialist again. Lemme refresh your memory. R2, our special needs 10 year old, has violent rages when he's not being angelic. Those are pretty much the 2 options. So we saw a psychologist last month and they sent us home with a spreadsheet. I'll let that sit for a minute, for humor purposes.

Seriously, though, they wanted us to chart his fits and try to find some patterns and such. The only pattern I charted the first two weeks was his ability to NOT do something expected. Zero fits. Textbook. Then, the last two weeks, he used up all that stored tantrum with a couple of doozies. One fit lasted 55 minutes, with toddlers screaming outside the bedroom door and peeing on the floor in the hallway and dropping bowls of macaroni across the kitchen while R2 screamed. I used my webcam to tape that one and took the video with me today to the clinic.

The psychologist is young. Maybe younger than me. Last time, the supervising psych was in there, too, but today we just had the younger one. Sometimes, I feel like telling these nervous younger docs what to do. Eventually, she had some helpful ideas for helping R2 communicate, and then after we watched the videos of the fits, she said I was amazing and very patient.

There's something very healing about being honored by doctors and teachers. I think most parents of special needs kids are constantly second-guessing themselves and trying to make the best of a complicated situation, and there is always ignorance and implied (as well as direct) criticism. So when someone who sees a lot of these kids and knows how hard it can be says you're doing a good job, it means a ton.

I asked about a straitjacket, but no go. So, 2 visits down and no tranquilizer darts or straitjackets. What are these people doing, anyway?

If you are a cyber-stalker, then you already know that we took R2 to the dentist today. I know everything about everyone, because I read my facebook home and I have a photographic memory. So if you ever say something to me and I'm all like, I know, it is not because I have an entire wall in my basement filled with grainy 8x10 photos of you walking into 7/11. That is just a coincidence. What I'm getting at here is that that some of you already know what I'm going to say, and you're not even Dionne Warwick.

We went as a family, because this was a dental appointment and the likelihood of Total Spazzing was way, way up there. I called last week and explained Total Spazzing, and they agreed to use nitrous oxide (laughing gas) for the exam. Still, TS was not ruled out.

I had to stiff-arm my way around a little bit today, since the dental assistant was a little skeptical of the tantruming power of the mild-mannered tiny child in spectacles and a sweater-vest, but once the dentist came, he just took my word for it and gassed him. Also, Dr. Genius used a toothbrush for the exam. Is that brilliant or what?

R2 was a little nervous, even with the gas, but the MOG talked him through while I hung back, trying to keep my stress over in the corner since some people thought I was affecting the atmosphere. In addition to minimizing my atmospheric impact, I also tried to keep the other 2 kids in check, which involves a lot of whispered threats and attention redirects.

When it was all over, R2 and I were both greatly relieved. Oh, and his teeth are as jacked-up as I thought, but no cavities- so we come back in 6 months to start talking strategic teeth removal to make some room in his tiny mouth.

Today was our long-awaited behavioral and developmental appointment for R2. In fact, we've been waiting for a YEAR, and there was no real end in sight until he freaked out at the ENT and they suggested we put the word "autism" on his paperwork. He's not autistic, but that's one of the closest diagnoses we can work with. So I wrote it, and sure enough, we got an appointment.

Turns out, that developmental/behavioral is a very long clinic name for Psychology. Psychology is one nice medium sized word that would fit in a calendar square. Unfortunately, it makes people think of psychiatry and psychotropic medications and psychoanalysis, and finally, psychos. So, we get like 15 extra characters and have to make up unwieldy abbreviations like Beh/Dev.

If you think this is boring, you should listen to people around here talk about guitar pickups and fretboards. It's like a one-way unsolicited flight to Snoozeville, free of charge. Anyways.

So we sat with the psychologist behavioral and developmental specialist and his decoy doctor, and they asked questions about R2, and his rages, and what they look like, how long they last and what do we do and what do he do and so on. So we're describing it all (the MOG came, too) and R2 is kind of making sweeping gestures toward the window and growling, and eventually pantomiming hitting himself in the face and pulling his hair as we were describing the tantrums,  and then more let's go noises toward the door and the window. Oh, and the continual poking of the inner arm to assure, again, that there would be no shots today.

I did not ask for sedatives, because it was quickly clear that R2 is doing these behaviors for a reason, and we need to try to deal with that. The Dr. said to go ahead and keep him from hurting himself for now, and we have to fill out a worksheet every time and then in a month we'll talk about dealing with it more effectively. If I know this kid, he will now act very normal for a month and have zero fits for me to document.

The doc also asked about the "babies" and how they handle Richy, and it was neat realizing that Toby has really moved into a big brother role, taking care of him and Bean is also becoming pretty nurturing. Dr. Belden said he wouldn't be surprised if they end up in "helping" professions, which was cool.

R2 jumped and giggled all the way to the van, giddy with the realization that he had, once again, poked his arm and growled just enough to prevent a shot. #win

Took R2 to the doctor today... well, to be precise, I took him to a nurse practitioner for his post-op appointment. I knew going in that he was probably going to be stressed out, so we practiced yesterday and today. I would check his ears and then tell him to open his mouth like a lion, and it became kind of a joke to him, so it was going well.

He was a little nervous at the appointment, but still poking me and kinda teasing. Everything went fine until she had to check his mouth. He opened it a tiny bit but totally refused to do more. I warned her that if she had to use the tongue depressor, he would freak out. I think maybe she didn't really hear that part, or had a hard time believing that this small, pleasant little guy would have any real issues. So eventually, she did have to break out the stick and then, he did what he does. Which is, totally spazz out. I've talked before about what that looks like, so I'll skip it. Suffice it to say the nursing staff was alarmed and I worked hard to keep him from self-injury and to keep my own eardrums intact. For a long, long time.

We ended up leaving early, planning to reschedule a hearing test for another day. It was exhausting and embarassing and so frustrating. On the positive side, he appears to have healed nicely from the tonsillectomy.

I drove home near tears, and ended up putting a call into the neurologist - asking if they have sedatives for kids or some such. We're seeing him next month and I want to get happy juice for R2 that I can just squirt in his mouth right at the beginning of a fit and *zzzzzapp*. That might be wishful thinking... we'll see.

Now, several hours, and a large Coke and fries later, I am better.

Plus, I watched a youtube video that greatly helped my life.

Several months ago, I took Richy (R2) to a growth specialist on a recommendation from the nutritionist. He is almost 11, but he weighs less than 40 pounds and is about the height of a 5 year old. They were concerned about his growth, and organ growth and bone health. I vaguely remember being urged to start him on growth hormones lest his organs grew too big or stayed too small or something and, you know, killed him. In retrospect, I had all the kids there by myself and the doctor could have said anything and it would have been a mystery to me. So I came home from that appointment, alarmed the MOG and then waited for the next step. Well, the next step was injections. As in, needles. Every DAY.

This particular child has to be held down by 4 nurses to get his blood taken. Then, he tries to beat himself black and blue for a half-hour, EVERY time. So the thought of daily injections stopped us cold. Then we went on tour, and had holidays, and had January, and so on, and then today was finally the appointment we made to talk to the doctor and ask what-kinda-life-threatening are we talkin bout here. 

She basically said that Richy, based on our stature, would likely be 5'9 or 5'10 at adulthood, if his growth was normal. If we don't intervene, he probably won't get taller than 5 feet, and there is some potential for problems with his bone health and organ growth. The good news is, according to a bone age scan, his body thinks he is 7. So we are several years away from puberty and the beginning of growth-plate fusing. Oh, and the other good news is, they now have a needle-less device that evidently shoots high-powered air and injects the medicine with no needle. I have no idea how it works... they want us to come in and get shot with it so we can feel how easy it is. The demonstration couldn't happen today because all the nurses were at lunch, and I can't say I was disappointed to skip it.

We're coming back in 6 months to do some more charting and testing and we'll decide then if the growth hormones are necessary. If he only makes it to 5 feet tall, at least I know how to navigate the world from that height and I can show him the ropes. We also have to keep in mind that he, without a miracle, will be living  with and dependent on us for his lifetime, so being small is easier, that way. A lot to think about, but I'm glad we don't have to start the injections now. 

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In adoption news, donations are still coming in and we are so grateful. When I finish this blog entry, if the house is still quiet, I am going to go deep into my Self Study document and really think hard about things like, What is my personality, anyway?

Blogging here from the hallowed halls (actually, a hallowed PICU room) of Children's Mercy Hospital. R2 went through the surgery with flying colors, and did really well until he fell asleep around 11. Then, he decided to stop breathing. A lot. It went like this. Drift... off... to... ALARMS! BLEEP BLOOP LIGHTS ON NURSES AROUND drift...off... snore.... BLOOOOP BLEEEP TALKING POKING BLOOOP sleep.... and so on. All night long. The good news is, our ICU stay was not overkill. He actually needed to be monitored overnight. It's always good to know that we aren't racking up frivolous hospital stays.

R2 had such severe apnea, and such swollen tonsils and adenoids, that he hasn't been sleeping or breathing well for a while. So this surgery should really help, once his ex-tonsils stop swelling and blocking his airway even more. So last night was what they were afraid of, and I was relieved to have the help.

Being on the regular floor will be nice, since we can't use phones in here, and the bathroom is outside the ward, so it's a bit of a process, and there's a LOT of handwashing and scrubbing and signing in and out and no eating in the ICU at all (for parents) and so on.

He's pretty annoyed with all these doctors and nurses interrupting his movie to check on him and shine a flashlight in his throat. He has started waving goodbye as soon as they come in and address him. I am really enjoying this stay, except last night. But the rest of it is fun, with his little grumpy personality and then sunshiny moments after he gets some pudding or some drugs...

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In adoption news, $50 more came in yesterday! Thank you! If you haven't donated yet and you want to, or you want to donate again, the link is right over there on the top left sidebar!

I'm just going to fall apart here for a minute and sound like I'm indulging in self-pity, and then once it's done I'll decide if I want to publish it.

I am not one of God's "special parents", so equipped with grace and strength that He looked down from heaven and chose me to be the parent of a special-needs child. It just happened, and however sovereignty works and the reality of a fallen world and sickness and sin, we got picked.

Do we love our frustrating, beautiful, funny, and exasperating child? Of course. That doesn't change the fact that sometimes, rarely but sometimes, I wish God would have picked some other saintly carrier of peace and grace, who would know what the heck to do with this kid.

Today, we went in for his pre-admissions testing leading up to his tonsillectomy, etc. next week. It was super-routine, mostly me answering questions and them getting his weight and such. Until the end, when they had to pry open his mouth to check his throat. He had strep twice last year, and has become totally resistant to opening his mouth for anyone, which makes toothbrushing a bit of a challenge... anyway. She ended up using the tongue depressor for a quick check, and I mean like, 1 second and then she was done.

R2 has a tendency to tantrum when he is scared or hurt, and his fits are really, really loud and violent- to himself. So he went into one of these fits, and I was holding him on my lap and crossing his arms in front of himself, just trying to keep him from breaking his own nose or bruising his face. So then he started kicking himself in the ankle. I crossed my leg over his and held his leg still, and then he reared back and hit his head as hard as he could on my shoulder. Eventually, he slid out of my grasp and sat on the floor, with me still holding his arms, and slammed his head into the floor. I picked him up again. All this time he is screaming, roaring, snot running down his face and totally out of control. I was trying to stay calm and answer the doctor's questions, because there was still information that she needed. After about 10 minutes, she suggested that we finish by phone and I took him, kicking and screaming, through the entire hospital and back to the car. It was exhausting, and humiliating, and just beyond words. By the time we got to the car, he was done. I drove him to school, waiting for the moment when I could break down and cry this out.

These fits happen about once a week, and the only thing we can do is ride them out and try to keep him from really injuring himself. When it's over, we are completely drained of energy and usually, feel helpless to help him. Then he'll be sunny and beautiful until the next time.

So, no, I'm not specially equipped for this. I am just a normal, brokenhearted, weak mommy, trying to love my kid.

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In other news, if you haven't given toward Rylan's adoption fund, go now, read yesterday's post and donate- you know you could spare a couple dollars...

Yesterday, the screaming. Oy. It began in the morning and you can fill in the rest. All day long with the fevers, and the coughing, and the snot and the miserability. Tempers were short, and a lot of ugly things were said, like if you touch my game i will punch out your head and no you willnt punch out my head tobe you eeeeeeeeeeeeee (mutual choking sounds) and so on.

Then R2 started coughing and screeching, and then Brynn couldn't sleep because she couldn't breathe and so I held her and gave her nose drops, which elevated me to Public Enemy #1. Then, all night, the coughing and the snorting and gagging and crying.

Clearly, logically I needed to take these children to the doctor. I spent the morning wrangling them into clothes, and then back into those clothes, and brushing hair, maintaining my Public Enemy status. To the car, to the doctor.

We waited in the waiting room full of sick little kids, ALL of them appearing sicker than mine. My kids ran around and joked and talked to people and, in general, were not sick. It's a good thing the MOG and I enjoy sitting in waiting rooms for hours.

Once we finally got back to the room, through the decoy doc and on to the real doc, no one had a fever, or any other apparent sickness as they chatted with the doctor. We explained that they had, in fact, been ill, previously. Like, a couple hours ago. She believed us. She knows all about the miracle cure. Lucky for us, Toby did have gunk in his lungs and Brynn had an ear infection, so we were fairly legit. Sheesh.

I am safely nestled in the womb of the second largest state in the Union. Actually, let's face it. Nobody counts Alaska. I mean, it's a state, and Sarah Palin is great, but you can't really count a state that's all like frozen and mooses and stuff. Texas is full of people and therefore, bigger. I digress. Anyway, the point is, I am home in Texas for Thanksgiving, and determining which taco joint I will hit like Ike first.

On Friday, I had two teeth yanked violently out of my head for $250. That is a racket if I ever saw one. I took the laughing gas, and composed blogs in my head while he shot me up with Novocaine not one but FOUR times before I stopped feeling. My eye socket was numb till bedtime. Getting high is no good, by the way. I do NOT recommend it. Although, if a guy is going to be digging around in your mouth with pliers while talking about Tears for Fears, it's probably a good idea. It was rough. I want to forget.

Saturday we did a mondo Thanksgiving feast and you might be disappointed to learn that I totally bailed on the turkey but our friend Andrew saved the day and the bird and ROCKED it. All of the food was awesome, all of the people were awesome, and then fire and marshmallows and awesome and I am done here, done. Because it's TACO TIME!

Some months ago, I went to the free dental clinic. You might remember the story. Actually, I went twice, but I don't think I blogged about the second time. Anyways, at the first visit they told me I probably needed a root canal but Obama only wants to fix one thing at a time so I would have to come back for that. They scheduled me for March something or other and then I was on tour so I asked for a reschedule and they said I would go on a "waiting list". Envision a skeleton sitting by the phone. A skeleton with no teeth. Something like that was the plan.

I went to plan B: ignore the cavity. It's a brilliant strategy, but it only works for so long. So then the tooth, she breaks. There's no pain, necessarily, just a sharp edge and then my tooth guts up there in my gums. So for months now I have been scheming how to get this taken care of and then today I just was done. I woke up and called a dentist. A regular, non-free, non-welfare dentist. And I went in the SAME day and had a very very quick x-ray. I put it on my "Faith Card" aka Visa...

Sure enough though, the tooth is infected. No wonder I've been having all manner of sinus pain and headaches and such. Sheesh. So I have to take an antibiotic for a couple of days and then get it pulled Friday.

"You don't look nervous, " he says. "You don't look like a nervous patient."

"The only thing that makes me nervous is pain." I told him. He promised to thoroughly numb me, although he said with the tooth being so close to my ears I am going to hear a lot of crackling and popping when he extracts it. "I'll bring my earbuds!" I say, a little nervously.

"You're still gonna hear it" says Dr. Doom.

Nuts. Still, my strategy is to get this thing out ASAP so I can focus on EATING next week.

Sigh. Sigh, sigh sigh.

I took R2 to the ENT today. Back when we made the appointment, we knew he was having constant ear infections and his tonsils looked problematic. By the time we actually HAD the appointment, he'd had his sleep study and we knew for sure he would need his tonsils and adenoids removed, and probably tubes in his ears. So basically today I just nodded and smiled and signed stuff that I already agreed to and such. Did I tell you guys about his sleep study? He stops breathing 38 times an hour. Every single time, he wakes up. So he is not sleeping at all. Plus, with having 4 or more ear infections a year, with an average of 2 months for the fluid to drain and normal hearing to return. So he's hearing poorly for an average of 8 months out of the year. No wonder he's grumpy. He has a tonsillectomy and adenoidectomy scheduled for mid-November, and we added the tubes to that.

In other news, today during Toby's "quiet time" he found my computer, went into my facebook and recorded and posted 2 videos of himself. I think I have a busy 16 years ahead of me.

We leave tomorrow for Texas. Today we bought snacks galore, in an attempt to save money otherwise spent on gas station snacks. I doubt my own theory. I hope to come up with some more fiction tonight... I have several tracks this could take but I am undecided.

I am feeling pretty much like a human today, and not in a wretched-oh-the-humanity way. I feel more like a nearly-drowned-but-not-that-bad kind of human.

So here's what happened. I went to that wedding on Saturday, last Saturday, that is. I was feeling out-0f-sync and irritable. Then R2 got diagnosed with strep on Monday. I had a sore throat for days, but I was so not going to the doctor because come on, grown-ups don't get strep throat.

By Friday, it wasn't getting better so we googled a walk-in clinic since I am one of 46 million Americans without health insurance, since I choose to spend money on other things, and don't particularly want the government to use me for their statistics about the poor uninsured poor.

Anyways. I went to the urgent care place and paid my $75 and sat down to wait. There were about 10 of us in there, half for physical therapy and the rest just there to mingle our germs. I watched some discrimination in action towards a Spanish speaking guy who didn't understand the clerk... if I had felt like myself, I could have asked the questions... it isn't that hard to ask if he's there for the doctor and is this his first time... sheesh. Sometimes it really bugs me when English speaking people are so disrespectful to people who speak their native language AND some English. Wow, there's soapboxes everywhere today!!

Finally I got back to the room so I could wait some more, in a different place, and then after 6 or 7 years the doctor came in. Folks. This guy had to be 85 years old. I realized after a moment's shock, that I was being all ageist on him and decided to chill. If he wants to keep practicing, good for him... I bet retiring is hard on doctors who love what they do. He was skeptical, though, of my having strep. "Your son was diagnosed with strep, and now you think you have it. Or do you have psychological strep?" he asks me. I don't like being doubted, but he was practicing medicine before the President was born, so he's entitled to some skepticism.

He looked in my ears and down my throat, which looked perfectly fine to him. He listened to my lungs with the stethoscope held tightly in his shaky hands. Lungs are clear as a bell... only one of 10 patients coming in here with a sore throat actually have strep, he warns me.

Lucky for me, the Google told me that I definitely had strep, and was minutes away from contracting rheumatic fever. I love the Google. So the doc expressed a couple more kinda reproving thoughts, about me thinking I had strep, and then he hobbled out. I'm no ageist. I will scoff at anyone of any age who doubts me and what I know to be true of my burning throat and my Google knowledge.

So the nurse came in and took the swab, and I gagged a lot like a little wuss, and then after about 1 minute the doctor came back in and told me I had strep throat. Drugs were prescribed, and then I went victoriously to CVS where I waited some more, feeling like I had gargled razor blades and my head was underwater and such, and then I took my drugs and went home and laid in bed for 3 days moaning and weeping and reading Facebook. The hubs took care of the little people and brought me tea. Today has been the first day that I felt like standing up, and it's a good thing, because the MOG was out of clean socks.

Today R2 and I went to the neurologist, for a follow-up visit for his last seizure, 3 or 4 months ago. The neuros name is Dr. Jean Baptiste LePichon, and that name is RULE. I usually sing a little Le Poisson in my head whilst I wait. Le Poisson, le poisson, how I love le poisson... and so on. Dr LePichon is great. He seems to be on a continual quest to find out what is going on in Richy's brain, literally.

I love the hospital here, the doctors, the clinics. It's all just world-class and everybody seems to want to help R2. This is amazing, because in Houston we had kinda settled into maintenance mode, only dealing with issues on a crisis basis. So here, they are testing for all kinds of stuff, plus we got the new eye last year, just in general being very proactive. I heart it.

So, as usual we wait in the waiting room, which is always an interesting experience. We shared the room today with a very, very large boy in a wheelchair and his fairly large granny, also in a wheelchair, and various other family members, not in wheelchairs.

People are so interesting. All 4 adults kept Caleb pretty busy rolling around the waiting room to make space for more patients...he was pretty longsuffering, and barking at Caleb might be pretty much par for the course. Most of the time, you don't know what's wrong with someone, and you can't ask. (although, when R2 was little, rude people would frequently say "What's wrong with him?" in the checkout line at the grocery store. I always wanted to answer, "what's wrong with you?")

And then we waited in the office, gave the same ol' info to the decoy doc, and then finally Jean Baptiste LePichon came in for his turn. He is such an interesting guy. He talks to Richy with such kindness and warmth, and then he is much more reserved with me. Today he was doing his exam, and was kinda hanging out at the left eye, when I mentioned that it was prosthetic. He was so interested, and then he went and got a resident and brought him in for a pop quiz. "Don't tell him anything!" he told me . So the resident examined him and then said that the left eye didn't move quite right, and the pupil was non-responsive. I was laughing, and Dr LP congratulated him... it was great because I used to be cohorts with doctors in the NICU, and it was fun to do that again.

Just to contribute to the overuse of the word "interesting" today, I'll say it again. He suggested something interesting- that possibly R2's seizures, and physical issues are a genetic abnormality, rather than cerebral-palsy based. It's something he wants to explore, since his study of R2's brain scans don't show clear reasons for his issues.

So we went down to the lab and had blood taken, and that was traumatic, so we went and had a Happy Meal, and then he laughed all the way home. That's why they call it a Happy Meal.

R2 and I went to the eye doctor today, or if you're all fancy-schmancy, the ophthalmologist. It's been a year since our last visit, so you might not remember that our doctor looks like a movie star. It always surprises me. I mean, you expect to see stunning people at your run-of-the-mill 24 hour house of prayer, with awesome hair. But when you go to an eye doctor you kinda expect the scrubby short-haired glass-ed type with the lab coat. This one wears beautiful shiny clothes and has flowing curly blonde hair and a purse of magical toys. Anyways.

Going to appointments with just R2 is always a little strange. I mean, I did it for 6 years before Toby came along, but now I've gotten used to constant input. Constant. So now, to ride for a half hour with no talking in the van, and then around various elevators, up to the clinic where I answer all questions on his behalf, and so on. You'd think I'd enjoy the break from the noise. I tend to talk to him a whole lot, and kinda just keep both sides going.

His prescription from last year was a little strong, so we got a new and reduced one, which is fun because new glasses! I got him some hip little black frames that look pretty cool.

Also today: we got an x-ray of his hand and elbow- to determine bone age. This is über cool. He's about to go through some testing to determine if it's a problem that he hasn't grown in a couple of years, and the bone x-ray is the first step. I'm very curious as to how old his body thinks he is....

In other news, Toby has not been hellacious today, and I am feeling a little better. Chicken or the egg, who knows...

I am having a hard time blogging today, because I am sad. Sad makes people uncomfortable. 

I am sad because it is April, and I miss my dad. 

I'm sad because I miss my sons who would be coming up on their 5th birthday in June.

And I am sad because I am freshly grieving R2, and the future.

I talked about this before, about seasons of recognizing old losses and new ones with him. Yesterday I took him to the doctor for his 9 year old checkup (he'll be 10 in June. Oops) and it was just me and him. For most of the time he was in his own world, but when doctors started coming in he came and sat with me and held my arm. For a moment, I knew he needed me, and loved me. Most of the time he is so, so distant.

The appointment was fine. We are going to be referred to an ENT, because he failed a hearing test, (he hears fine, but something is wacky in his ears) and to a neuropsychologist, to try to get a grip on these violent self-injury fits. It was a strange appointment, because it's the first one anyone ever talked about long-term care for him. We plan on him living with us all his life, but it's just a little bit of a fresh blow to hear it again, that he will never be independent, barring a miracle.

So today, my heart is heavy. I'm hurting because life is not perfect, and there is suffering, and pain. Someday everything will be made right. Until then, my spirit will long for Eden. 

Somehow, there is such a beauty in grief. I love, so I hurt. 

The most effective way to cure children is to make a doctor's appointment. We have one at 3 today, and it seems to have made everyone well. I love this, because it makes me look like a psychotic helicopter parent, who brings their kid to the pediatrician for a hangnail. 

A few times, I have just waited it out and we end up in the hospital. That's the other alternative. 

So we'll go, and it will take forever, and they will look at me kindly and tell me that kids get sick sometimes. I will refrain from telling them that sometimes my kid gets his BRAIN opened and stuff put inside. I will refrain. 

Instead, I will sit anxiously on the edge of my seat when they tell me Brynn has a temperature of 99. "Is that okay??" I will ask, wide-eyed. "What should I do?" They will tell me what to do, which I already know because I have the internet. Maybe someone will mention infant Tylenol. (I will scribble Tylenol on my notepad) Then we will come home. 

Too bad I can't rely on what I'm pretty sure will happen. Because, every now and then you go up there and they tell you that your kid is actually, truly sick and you should have brought them in sooner. That's the way of it. Peace.

ALL RIGHT! Shoooot.... you'd think I was getting paid for this. 

As I write, there are two naked toddlers watching TV and a very mad little boy laying on the couch. I don't know why he's mad. It is one of the continual frustrations for a mom with a non-verbal child. As to the naked toddlers, the girl-child has a rash I am trying to let air-dry, and the male child is going to be potty trained so help me God. And clothing hinders him. 

I plan on taking on many of your suggested topics, on a day that I don't have my own topic to discuss. Today, I want to whine. 

R2 has been home sick for several days. He had  a seizure a couple of days ago, which we didn't catch. We only knew because he couldn't stand and was disoriented when he woke up and then he slept all day. So it was a minor one. Since then he's been running a low fever, which is no big deal for a normal kid but a real risk for us. So I took him to the doctor and she thinks he just has a cold. Which is fine, but the fever continues. Stresses me out.

Waaa... right? I mean, he's the miserable one. But he doesn't have a blog to whine on, and I do. I just wish he could talk. When he was born, I just wanted him to live. And I'm so glad he lives, and does so much more than what was predicted. He's already a miracle.  I just get so tired sometimes of being locked out of his world. 

In perspective, his disabilities are minor. And I am a wuss. 

Let this be a lesson to you. Clamor for a post when I am in a whiny mood, and voila! whiny post.