Helmets, Massage, and Sitting

That's a lot of pictures, but I can't get enough of these kids. :D

The Boy is pretty much awesome. That's not new. That's old news. But it's so true it bears repeating. So he's had his helmet for almost a month now. We went with solid blue. And I've got to say, I'm really happy with it. It matches EvErYtHiNg in the way of infant boy apparel. The plan was to get biker stickers to put on it. Our neighbor is so cool. She's a Montessori teacher who also rides a Harley and plays with a roller derby team. So she left some stickers on our porch as contributions for The Boy's helmet. Turtar's favorite was this monkey skeleton. It was too big to lie flat on the helmet, so I went to great lengths to transfer it with permanent marker. In fact, I even bought a set of permanent markers with something like 20 different colors. Unfortunately, permanent markers don't stick to this helmet. They work more like dry erase. I have no idea what the helmet surface is made of, but I keep thinking of my high school chemistry class... all I remember is "like dissolves like". Oddly enough, the pencil I used initially to sketch in a monkey skull under the strap, I can't get off all the way, even with rubbing alcohol and nail polish remover. So, usually I leave the helmet plain, but last Sunday I let Her Nibs draw a heart and color it in, and I drew a mouse (at her request) along with some encouraging epithets. The Boy has also seen an osteopath twice and his head is showing significant improvements in rounding out. Hurray! Sadly, Medicaid will only cover these custom helmets before 6 months of age and The Boy was at least 6 months and 5 days at the helmet fitting, so we had to pony up for the co-pay ourselves. He was sweating in it like crazy at first, but it's calmed down a little. It does get really stinky and we have to clean his head and the helmet very thoroughly everyday. Whenever we let him out of his helmet for his one hour, he is positively euphoric. Every time he seems to think "That's the end of that!" So sad it's not true.... but at least one time it will be...

We are also doing infant massage with The Boy. Someone from church is certifying to teach infant massage, so I was fortunate enough to get the course free as part of her certification. (YEAH!) And I like it. I think it's really good for The Boy. At first I thought of it as very extra-curricular, but his therapists and osteopath have been so supportive of it, and proud of me for doing it, that I'm pretty committed. The Boy doesn't like it on his arms and chest though. I mean, he really hates it. He yells and complains during therapy, but he was bawling his eyes out when I massaged his arms and chest. The massage therapist said 'go easy. if he doesn't like it, don't push it'. The osteopath said 'of course he doesn't like it. he's so tight in there, but it's good for him, do it anyway'. And the occupational therapist said 'do it on the arms, but not the chest. there's tons of nerve endings on the chest; we don't even do touch therapy there'. Oh yeah. His Physical Therapist taught me the touch therapy treatments to do today, too. It's with this soft brush, like you would use to brush the silky threads off a corn on the cob. I think it feels nice. The Boy does tolerate it better than massage.

The big goal right now is sitting. The Boy is SOOOO so close. Today he was prop sitting for like 20 or 30 seconds. AAH-SUMMM! (in a sing-songy high-pitched voice) I don't think he'll be there by 7 months (which is tomorrow), but he's almost there. He hates it, of course. But I get that. I started a new workout routine 2 weeks ago and my muscles are always aching. I bet that's how he feels. When I'm sore from the last workout still, I don't really feel like working out again. We're in the same boat. And I find he is a great inspiration to me, motivating me to work harder to develop my own muscle tone, even when it's hard, even when it hurts, even when I'm tired, striving for my own milestones...

And we're doing solid foods, too. That's really hit or miss. I thought we were really getting a handle on it the other day, and he's started sticking his tongue out constantly. Not the "I'm used to nursing and I use my tongue for that" sticking it out, but sticking it out like he's trying topoint at something with it while receiving food. But at least he now accepts eating solid foods as a viable solution to his hunger. Nursing is not the only answer!

In other news, I'm feeling completely inadequate. We're learning about an amazing treadmill intervention that can have kids with DS walking about 4.5 months earlier. Definitely worth the effort, but I'm still cringing a little and bracing myself against yet another step in our daily therapy and care regimen, even as I start scouting out an appropriate treadmill. Maybe it's just another step in the process of accepting my son, but I feel like I resent my own weaknesses, not his. I think 'if only I were more organized and productive, if I were already on top of my own issues, I would be able to handle my son's care better'. *sigh* But we all adapt to the hand we're dealt. Maybe Urban Tangerine would consider adding her bit about Kung-Fu Panda on this blog as well. I keep trying to tell myself 'there is no secret ingredient ... I am the Dragon Warrior'. I may need to make a T-shirt to remind of it, though, printed in a pretty reflective metallic. I am the Dragon Warrior! Or at least, I'm training to be.

If producing ear wax was a super power, I'd buy a cape for The Boy. It took a nurse and three doctors to clear out his ears. He does have super teeny tiny ear canals... maybe he's earned a cape after all.

The weird thing was, after he had his ears cleaned, he ate better than he ever has. He had almost no coughing, sputtering or any indications that he was overwhelmed by the milk. A day later, we were back to the same business, along with gassiness and fussiness coming back. Weird, huh?

And, I learned a new use for laxatives: Drop "Pedia-Lax" in each ear weekly to help break-up the wax. I hope his darling little ears appreciate the Fruit Punch flavor. (double weird...)

Actually, the biggest thing lately (worry-wise) is that the back of his head is still really flat. Next comes a head scan or two to see if his head is technically 'abnormal' and if he needs a helmet. I think if he needs a helmet, I'll buy a mini skateboard to carry around with him.

In other news, he's totally starting to grow hair. Tummy-time is at an all time high, to the point that he's rolling out of it almost as soon as he's put in and pushing up on his hands a little. The Boy is King of The Tummy! Maybe I'll get him a crown to go with his cape, helmet and skateboard. Babies are all about the accessories, right?

There and Back Again

Our baby boy is finally here! Turtar is working on a new codename, but we'll keep calling him Lizard Loaf for now. Nervous mother that I am, I decided to be induced at 39 weeks. Everything went great, and he was born 5 hours after we arrived at the hospital for the induction. Other than being a little jaundiced, he seemed perfectly healthy. We went home on day two and drank Martinelli's with every meal.

A day and half later, we were back at the hospital. I noticed he felt cold around 4:00 am when I fed him. A call to the doctor led to a visit to the ER. Fortunately, we live 15 minutes away from a rock-awesome children's hospital. They don't take chances, especially with newborns. It did kind of freak us out, though, when someone actually met us outside, rushed Lizard Loaf and myself back to a room while Turtar checked in, and started a battery of tests. Oh, and we had about 6 nurses and doctors all crowded around him. Later, we had fewer. We found out nothing had been happening in the Children's ER for the past 2 hours. We were all the action.

Apparently, low body temperature is just as significant as a fever, and possibly even more so. We expect a fever to develop to fight an infection or virus of some sort. With a low body temperature, the body might be so weak it can't even mount a fever; it can't even fight. That's one option. It could also be caused by just about anything. Best case scenario: He is a sleepy baby. He didn't eat well. So, he didn't flush out his jaundice, and he gets sleepier. He eats less, etc., and becomes dehydrated. Dehydration could cause the body temperature to drop. Worst case scenario: Meningitis (I think). Lizard Loaf was very dehydrated. The doctors said he would have been admitted to the hospital just for that reason. But, meningitis can be fatal, so they aren't going to settle for just an IV when the problem could be so much bigger.

I can't even keep track of all the tests he's had, all the results from the tests, and what the possible meanings of those results are. He was placed under a heat lamp right away. They took his blood, which is very sad and difficult by itself (he has my veins; we're stingy with our bodily fluids). They put in an IV, also next to impossible, and had to strap it place. It takes up almost all of his forearm and looks like he's wielding a brick. They attached leeds for heart rate and temperature. They taped something else (first to his foot, then his forehead, then his hand, then back to his foot) to measure his oxygen levels. His oxygen levels were low, so they put him on oxygen. They did a spinal tap so they could test his spinal fluid for infection. He was so dehydrated, it an hour just to drip enough spinal fluid into the little test tubes to run the test. They didn't have enough blood for his tests, so they had to take his blood again. The IV was set up to be used for a blood draw, too, but that wasn't actually possible, so they had to stick him again.... and again and again. They ER nurses blew at least 2 veins before they got blood, and it was coming too slowly, so they had to start that one over again and suction the blood from his veins. It was a very rough morning, to put it gently.

For now, his body temperature is holding steady. He is eating much, much better. At one point, he ate 60 ml at once where he had been eating 10 ml at a time. Mostly, he's been in the 25-40 ml range today. He is peeing and pooping well, which is flushing out the jaundice. They have been able to reduce his fluids. He's had to have blood drawn several more times, but the tech seemed more capable. At least he didn't blow any veins, though he still had to suction the blood. And the last blood test was just a foot prick. They have tried taking him back off oxygen, but his levels drop when they do. So, they x-rayed his lungs. They called the x-ray 'abnormal'. They wanted to get a better look at his trachea, so they put a scope down his nose this morning. They still couldn't see what they wanted, so they did a CT scan. We haven't heard back on that yet.

Other tidbits: His thyroid levels were slightly elevated, as is his red blood cell count. His hepatitis test came back negative, so they took him off that medicine. We saw an speech pathologist today who watched him eat. He swallows well, and sucks well, but does have trouble maintaining his seal, which means poor efficiency. He needs 'cheek support'. (As if I needed incentive to squeeze his cute little cheeks!) This is apparently really normal. When the speech pathologist mentioned this ('cheek support') to the nurse, she said, 'Oh. Okay.' So, I squeeze his cheeks in a little when I'm feeding him to keep the seal on the sides. We also saw some ENT guys (three of them... this is a teaching hospital); they are the ones looking at the trachea. Well, everyone seems to be looking at his trachea. First the pediatrician wanted to see it, but he had to look at with a radiologist, and then they showed it to the ENT guys. I guess it's another radiologist that will look at the CT scan, as well as the ENT guys and the pediatrician.

Tomorrow, he will have been on antibiotics for 48 hours. We hope by then to have ruled out the other major infections and to be going home. Hopefully, he'll be cleared and cured completely. Maybe there will still be some problems that need to be tended, but without staying over. But, will they have uncovered something else that will require extending his stay? How much do the red blood cell count and thyroid levels matter? What is the deal with his trachea? Why is he needing oxygen at all? We'll all stay tuned...

And I promise pictures another time. He is abnormally beautiful. And I did a full face of make-up before I went in to be induced, so I'm not even that embarrassed by the pictures of me. Soon, I promise. For now, there are two pictures of Lizard Loaf on this blog.

Acclimating

The medicine is called Vigabitrin or Sabril. It's time to learn the name since Mermaid will be taking it for about 6 months. it comes in a little foil pouch and I mix it with a little water each day to dose Mermaid morning and night. It's only good for 24 hours. She has been taking increasing dosages of Vigabitrin while tapering off of ACTH. But even the miracle drug from Canada has it's downside. Mermaid has had a lot of rapid eye and head movement. She seemed confused. She forgot how to nurse...surely she couldn't have lost her appetite. Eating was really the only skill she had left on track.

She wouldn't respond to the breast, but could manage the bottle. That's how I know she only drank 3 oz. in about a day. Her neuologist told me to hot foot it over to her pediatrician to see if Mermaid needed hospitalization again. Fortunately, she didn't look "septic" or "toxic." Their words. The took her glucose. Tested her urine and tried 4 times for blood, but came up dry. Mermaid wouldn't give them anything. It's probably because she was dehydrated. Mermaid didn't cry at all. She just grunted once or twice and almost fell asleep as the various nurses and doctors all tried their hands at a needle search for veins beneath her chubbiness. It's just not natural to be so accustomed to poking and pain. I'm sad for her acclimation.

Ultimately, Mermaid perked up, nursed and her Vigabitrin dosage was cut in half. She has continued to nurse, but doesn't cry if she's hungry, so I have to think of it. I know I'm not currently producing enough for her and last night she accepted an additional 12 oz of formula. So far I have noticed some shaking in her right arm and head a la Parkinson's disease. She is also sleeping like a newborn. It's been a couple of months since I've seen her smile. I miss that. I guess I'm acclimating just like Mermaid because this is not making me cry either. We are absolutely doing the best that we can and I need all my energy for taking care of my family. I can't waste it on worry. I'm grateful for every day that I get to hold me sweet little one and kiss her chubby face.