We had a normal blood test on Tuesday, even including some extra tests for hormones like growth hormone, thyroid, tsh and anything that else would point to endocrinological reasons for his poor growth.

His hemo doctor said that his blood counts have been normal for several months now, so next visit she won't need to draw blood. Woot!

We took him off all steroids on Tuesday and aspirin today. Now he's just on Prilosec.

He gained a little weight up to 10.46kg or 23lb 1 oz. Still no height growth. In fact he supposedly shrank down to 75.8cm, but he wouldn't stand too well. But hey, he's walking now so he gets to stand on the big boy scale now and use the standing height measurement thing.

He also got tested for allergies today and has no discernable allergies. Hooray!

He's getting tested for Celiac disease and his stool will be tested for absorption to see if he has a problem absorbing nutrients.

He does seem to be eating a little more since we took him off the tiny dose of steroids he was on.

Little T's hemo apt went well. Blood stats all normal. Arm still shrinking. No can explain why he falls over while sitting. He needs to be referred to neurology. Just once I'd like to be told "Don't worry, it's normal." Used to happen all the time at checkups with Special K. Oh well.

The brachioplexus doctor told us Little T has a brachioplexus lesion caused by either his tumor or his birth or both. He said we'll never know the cause. He said it's too early for a prognosis. He's only seen three cases in thirty years with a massive tumor like Little T's of varying types. "All had a limb that had some use, not something they just looked at. None were completely normal." We wait until Little T is older to see what happens. He talked about possible muscle grafts several years from now.

Believing his birth caused lasting damage really hurts. His birth was a major life-threatening trauma for us both. And utterly preventable.

I was hassled for not taking pitocin which almost certainly would have killed him. When I was checked in, a nurse felt Little T's massive left arm and thought it was his head. Concerned, she asked for an ultrasound. The OB on call waved her ultrasound wand at his head, and sneered at the nurse. "See. Head." If she had bothered to look where the nurse had felt, she'd had seen his arm and I'd have been rushed in for a c-section.

I'd thought to ask to look at his body, and for a while I blamed myself for not asking. But later I realised the OB would have merely sneered at me too. She'd been sneering since I refused pitocin. Sadly C wasn't there and I forgot about the incident as I went into active labor.
( His arm at birth and now )

Special K had her 4 year checkup. She's 30.5lb (25 percentile) and 39" (35%). Her vision is 20/40. Her hearing is normal. Of course I expect her checkup to be normal. Yet it was nice to go into the doctor's office and have them say "everything's normal".

Little T's tumor is still shrinking. His latest hemo apt was postponed to 2.5 weeks and his numbers were nice and normal. His next hemo apt won't be for a month. Last his tumor shrank, he got a horrid rash on his left arm. Last time, it was a yeast infection. So we treated it with Nystatin. This time, it did nothing. So I took him to his ped who said it was eczema. Last time we thought it was eczema and it turned out to be a yeast infection. So this time we got steroid cream. Now it's healing, though still rather red.

Little T continues to vomits a lot with reflux. We're prolly going to switch him to stronger reflux medicine. Sorta reluctant to though. I forget why Prilosec was bad except that it was. I kinda blocked it out. I remember that we had to feed it to him orally with the NG tube, but it caused something else bad too. He's teething, so we're hoping his reflux will get better when it's over. Lots of teething means lots of crying and fussiness. I worry until I make sure it's just teething and not something more serious. He's normally such a happy baby.

Our house in Oakland is finally ready for sale and the first open house will be on Mother's Day.

I got to level 40 on World of Warcraft and I promised myself I'd start writing again after that. Though the rest of the family still needs my time and energy a lot. And I continue to be in crisis management mode. Still I have a deadline of May 20.

Little T's radiation therapy has been officially cancelled. Hooray! His platelets continues to look great, though once again they failed to get fibrinogen. Sadly his white blood count was elevated because he's a bit sick. He caught some kind of cold from Special K and had a slight fever yesterday. He also has goopy eyes and a runny nose. Poor tyke.

Little T's platelets were his best ever at 261. Even after two rather painful attempts, the lab tech wasn't able to get a good enough draw for fibrinogen. Poor guy has a lot of scar tissue around his veins now. His tumor continues to shrink overall. In fact in some places his left arm is now smaller than his right. Unfortunately his hemo doc still thinks it's creeping up his shoulder. We'll decide next week whether to proceed with radiation therapy. She thinks not right now. We hope not.

We went to two lovely parties this weekend. For the first time in months Little T was allowed to go and reveled in meeting people. The nicest part was seeing folks at giandujabird's wedding reception that I hadn't seen in ages. Funnily enough exokam commented to me at the beginning that she was amazed at how many people she knew. Initially I brushed it off, since I already know that giandujabird is a nexus, even if she denies it. :) However after a while I realised I had met almost everyone there on giandujabird's side at least once. That's worth remarking upon, because I met giandujabird after college.
Special K and mirandatime who's in fact 2, but who already has her own LJ (kept by her mama) had "cuteness wars" dancing together. I'll put some photos eventually or check over there for some.

Little T also went to a playdate on Monday. He played Legos where the 4yr and 6 yr built towers and he took them and tried to put them back on the lego table. He pretended to eat and drink at "a tea party". The 4 year old also gave him various toys which he threw down on the ground then they both laughed. Apparently this game was hilarious, because it went on for several minutes. I've never seen anything quite like it. Special K was still warming up, but he just dived right in with a big smile and a noise that isn't quite "hi", but is recognizable by anyone as a greeting. He plays with his sister, and I'd never really thought much about it, but he'd never met these kids before or been to the house before. The nurses at the NICU used to say "he's so engaging" while ironically I worried a lot that his NICU experience was retarding him socially. Now he can say about five words, he can't walk, he doesn't really eat, he can't use his left arm, but he's got remarkable social skills, so I guess my boy will do just fine.

Sorry to be so quiet. Kite flying was excellent. The winds picked up our kite and it flew high with little effort. In fact Special K was a little disappointed, because she kept wanting it to crash. Little T has been cleared for limited contact with people and we figure that meant Mother Nature. So he scooted about on the dirt with great joy. He kept trying to head for the puddles. I stood in front of them. He was too delighed with his new found freedom to care much. He flung rocks at the fence. Best game ever! I'd forgotten what joy Special K took in such simple things.

On Monday I crashed to earth. We went to his Gastroentrology appointment. Always disappointing. He never eats enough. Never grows at all. Never gains enough weight. I've written a lot about that before. What I haven't been writing about. At least not much, because it's utterly gross and grim to face...every morning he vomits. And I mean vomit, not baby spit up, but full-on retching that involves his entire body. What a horrible way to start your day!

His doctor prescribed Reglan. His food sits in his stomach from night until morning instead of being digested. You can imagine how we know this. Reglan works great except there's a small risk of side effects that it can cause neurological problems like loss of balance. Let's hope that in this, Little T is not the exception.

We also received the full bill of repairs for my house in Oakland. Very sad for me. I've gotten over thinking it's my fault, but it still makes me sad. And I needed to escape for a while, so I played lots of World of Warcraft when I had computer time.

Little T's platelets went down to 176, but continue to be normal as does his fibrinogen. His tumor continues to shrink. His MRA confirms it's shrinking. The process seems to exhaust poor Little T, because he'll take 7 hour naps then sleep through the night.

On Wednesday we went to the hospital at 9am and didn't emerge until 3pm. It's taken me this long to recover and write about it. Little T had an MRA (magnetic resonance image with dye contrast)on his arm. We saw his Hemo. His platelets were 207. After a lot of calls about whether leave his IV in or not, which took almost two hours, we left his IV in at the last minute. Unfortunately the day surgery nurses failed to draw his blood properly for his fibrinogen. The Hemo nurses tried and couldn't draw any blood through the IV, so leaving in the IV proved a useless frustrating waste of time.

His hemo doctor saw that his tumor wasn't growing, thanks to the black lines we drew on his shoulder with permanent marker. She asked me to try to postpone Radiation Therapy by two to three weeks so we'd have more time to decide whether or not to go through with it.

When I got home, Radiology had left a message on our voicemail. They needed to postpone Radiation Therapy by three weeks starting April 24, because the MRA was late and due to scheduling issues on their end.

I could write more, but C just called and said that Special K wants me to come to the park and bring our kites. Later!

I got up at 5:30am. C got up at 5. We went to the hospital. Little T went under. I worry a lot when Little T is anesthetized. More so than when he gets chemo. I can see him he gets chemo. He screams because he hates being held down, hates being stuck with a needle, but I can see him. I know he's still alive. But when he goes under, I don't know if he's alive. I have this primal fear he'll never wake up. I've been put to sleep once. I hated that feeling, of losing time. I felt horribly disoriented after I woke up like my brain had been scrambled a bit. I think Little T feels the same way. He often wakes up crying. I worry a bit if we're damaging his brain with all this anesthesia. This makes the ninth time he's gone under. All these procedures require him to be anethetized.

I know this may sound silly in the long list of things I have to worry about, but this is what happened today. And honestly sometimes I worry about smaller medical things, because the bigger things are just too big to worry about. I need to get through the day, this day. And to be honest, worrying about the small things often affects his well-being. I made damn sure they were going to keep that IV in him and did a blood draw while he was asleep. I keep track of lots of small things like who the best nurses are to give him IVs.

They did a CT scan to prep him for radiation therapy. They put two tiny tatoos on his skin. They made such a big deal about it, I thought they'd be bigger, but the tattoos are a bit bigger than this .

Then we went over to Hemo and got his lab results. We were dreading the results, because we thought his numbers had dropped and he'd need another dose of Vincristine. But his Hemo doctor came in with 'I've got a secret!' face. His numbers were the best they've ever been -- 207 platelets and 260 fibrinogen. Wow!

So we're back to whether or not to give him radiation therapy or not. I insisted on drawing a pen around the tumor on his shoulder since his hemotologist says it's growing there and I don't think it is. We'll see what happens on Tuesday.

On a more important note, but less decided. We've decided to go through with the numerous tests needed for radiation therapy and see how well Little T responds to no chemo and weaning of steroids. At Tuesday's apt, his platelets were above normal at 176, but his fibrinogen was still below normal at 186.

He still smiles and laughs a lot, but he has a tough time, especially in the afternoons. He either sleeps for 6 hours straight or 20 minutes. If he sleeps for 20 minutes, he wants to be held a lot. He gagged and threw up this morning when C tried to feed him banana. I guess the poor guy feels pretty nauseated. Tuesday was his last chemo, we hope.

But honestly he's the sweetest person I know. He's the only baby I know who says "yeah" to every question. He has never said "no". He either answers "yeah", says nothing, or cries when he doesn't get his way. He also says "ba ba" for bottle. He signs 'more' with one hand. He also calls me "ba ba" because he can't say "mama" yet.

On the plus side, his blood work numbers continue to improve. His platelet numbers are now normal at 154. Woo hoo!!! Fibrinogen is higher too though below normal at 172, but he uses fibrinogen to clot off the tumor, so that doesn't bother me.

However mostly being at the hospital made my head hurt. We arrived at the hospital at around 10 and didn't leave until almost 3. We have a tough decision to make -- whether to give Little T radiation therapy or not. C and I have talked about it a lot and we haven't reached a decision. That will take some time. We don't disagree. It's just that right thing to do is so very far from clear. I find I've spent so much time thinking and talking about the pros and cons that I'm afraid I don't want to rehash it right now. Suffice it to say that as usual, there is no usual. We'll have to decide this on our own with little data, because he's such a rare case and his case has already broken what happens in most of the few cases. I hope that make sense.

However in a case of brilliant timing, half an hour after we got back, the mail carrier rang the door bell. She dropped a special delivery all the way from Holland! frumiousb sent us a care package full of things. We're saving some things for later. But what we saw so far was a postcard from Holland complete with windmill and a kind message. Two cartons of Droste pastilles (yum!), a wooden tulip bookmark and some paper napkins. When Special K saw the napkins, she just lit up. Moments before I got the package, she had been sitting in the car crying. But she waved the napkins in the air and asked if she could use them for supper. Then I spent 20 minutes with her wrapping the napkins in a tea towel. I'd say "Here's your present!" She would unwrap the napkins and then shout "Napkins!" Repeat until Mummy gets really sick of the game.

Thanks so very much frumiousb you really brightened Special K's and my day!! It was so very sweet. I'm touched.

As the Beatles song goes, I've been getting by with a little help from my friends (and my family).

Yesterday Little T got among his best platelet numbers so far this time -- 146, fibrinogen was 156, so I hope his course of vincristine will be short. He cries more and I think he's lost some weight, but so far (knock on wood) he doesn't seem to be losing his voice/hair and his pain seems manageable without drugs. The effects seem to be cummulative, so I hope the tumor responds as well as it is now and he only needs four doses like they're telling us.

On Saturday our respite care worker bailed on us, because Little T has a cold. They're not supposed to babysit kids who are "sick". How that's interpreted is left up to the respite care worker.

On Sunday my parents came to visit for supper. My mom helped out a bit too which was nice. On Monday we visited our friends Jenny and Sam. Little T had a great time pulling up on their stuff. I also did a bunch of shopping and bought some art supplies for Special K and a pile of binkies for Little T among other things.

I've basically been dealing by not dealing with too much. I got overwhelmed and started having bad thoughts. I hadn't thought them for a long long time. Not since college really. It just means I'm too overloaded and need to cut down on my responsibilities. Since I can't cut down on my family obviously, other parts of my life go dormant. And I'm afraid part of that (at least from the standpoint of my readers) is not posting here too much. When I get on the computer, I can choose whether to write, or to post here, or to play World of Warcraft, and lately the complete fantasy has been winning. I know this phase will pass. Because both C and I played WoW intensively around Christmas when things were really bad. Then things got a bit better and we got tired of it and did other things. C is already showing signs of getting tired of things as we're starting to resolve our financial thing. Though it still majorly stresses me out.

It really hasn't quite sunk in yet, even though we knew it was coming, but Little T is going back on chemo, perhaps as I'm typing this. Little T's platelets today were 67. Not good enough to stave off Vincristine. I would say my heart is breaking on Valentine's Day, but right now I mostly feel numb. I'm still quite sick. My head is all stuffed up and my head aches. I was too sick in fact to go to clinic today. Poor C had to take Little T on his own. And it will take several days for Little T to show the effects of chemo anyway.

I've turned off comments, because I know you care, but I guess I'm okay with being numb right now. If you want to help and can visit, you can take Special K out if you like kids, or go out with me for tea or a meal if you like me, or bring by treats if you like treats. Or you can send a real or a virtual card or little treats. Special K in particular is cheered up considerably by cards, little presents and little outings, but it helps all of us more than you know. Not something I admit very often, but I'm in this weird state right now.

Sorry I haven't updated in a couple days. Been feeling very escapist recently and escaping into WoW.

Little T had horrible bruising and petechiae on his chest. Sometimes Little T gets very angry about his g-tube and start yanking at his g-tube extensions. C tried to stop him and didn't realise Little T was bruising himself. So we knew going into his clinic apt on Tuesday that his numbers were going to be down --87 down from last week. His hematologist caved on giving him aspirin. The UCSF doctors had prescribed baby aspirin to make the platelets less sticky. I think it's a last ditch effort to stave off chemo. He still has to be weaned off steroids regardless of his numbers and if his numbers don't pick up, he'll have to go on something else like chemo. I pray aspirin or his own body does the trick.

Yesterday I also finally called in his blood pressures after forgetting, because I figured his pressures were stable the same level as last week -- above normal, but not high enough to need meds. The nurse I called said the ultrasound showed an abnormality in the blood flow to one kidney. Problem is that could mean nothing, because it turns out when you examine people in great detail, lots of folks have slight abnormalities that mean nothing (we've discovered this previously with his urinary tract) or it could mean something serious. The nurse didn't know. I'm waiting for the doctor to call back. I'm assuming since no one called us that it means nothing. From experience when it's bad news, they usually call us pretty quickly.

We also had a GI apt and decided to do nothing in terms of his feeding, because as the doctor said "Too much else is in the air." Depressing but very true. But I like this doctor sooo much better than the NP. He understand his huge weight gain is due to the steroids. He's still not getting that many calories for his age.

On the plus side, our new nanny seems to be working out well.

Little T is a great lesson in deciding to be happy. He laughs and makes jokes most of the time. I try to learn from him. I try not to think too much about the immediate future, but on the here and now is pretty good...when Little T isn't screaming.

This morning at 5am, Little T woke up screaming. I got up and patted him a few times and he went back to sleep...for about a minute. Then he woke up again and started screaming again. I picked him up and I immediately got soaked. His front was drenched in cold formula, because he had wrenched the cord of the pump from the extension. So we all woke up to change him and dress him. Well, Special K didn't need to wake up, but unfortunately we need to turn on the light to change his arm dressing and his g-tube dressing and that woke up Special K. I can change all his dressings when I'm more awake, but it's hard for me with my movement disorder when I'm awake, let alone half asleep, so poor C does a lot of night duty. I used to feel bad about it. Still do sometimes. But I have tried by myself and it usually works out poorly for everyone. It's just one of those things about looking after a special needs kid.

C asked "Why didn't he wake up earlier?" I replied "He's just a good natured kid." I mean I dunno about you, but if I were in his situation, I wouldn't have been mollified by a pat on the back the first time. Another weird thing is that if Special K wakes up herself after a nap, she often whimpers, but if she's woken up in the middle of the night, she usually just lies there, gazing up sweetly. It's really nice. I feel blessed to have two such sweet kids.

Little T's platelets were 100, so slightly up from last week. He weighed 10.5kg. We're weaning him a bit more off the steroids. We're hoping that Little T will not need chemo (please!), but we're not out of the woods yet. We need his numbers to continue this slow upwards trend despite cutting back on steroids. So far so good.

Tomorrow we go back to UCSF for their vascular anomalies clinic...at 8am. Gah!

I need to call in his blood pressures tomorrow.

I turned in my edits for my "Gimp Geek" essay last night. I'm writing a cover letter for a new publisher for my picture book. You may have noticed I haven't mentioned my non-fiction book in a while. I've not worked on it. Been too overwhelmed. But things are settling down well with the new nanny. Special K hugged her on the first day and sits on her lap.

And hopefully we'll have made our huge financial decision soon.

So I'm hoping that some major aspect of my life besides my marriage (thank the gods) will not have issues hanging over it, and I can have the headspace to get back to my non-fiction book.

Little T's platelets hold a steady state at 91. His fibrinogen went up to 188. He gained weight to 10490g. His hemo doctor is concerned about his blood pressure though it looks like we don't have to put him on meds, and we're approaching the 3 month mark. So we're going to try weaning him just a little bit and hope that his platelets don't plunge like they did last time. His hemo doctor gave us this scary paper about Who knew? is a much harsher form of chemo given a couple times. Vincristine is a "gentler" form of chemo given over longer periods. But was given for a different type of hemangioma and some of the papers we've read contain very similar language about Vincristine.

He was measured at 70.6 cm. I thought that was growth, but I looked back and he measured at 71cm in November. So I think he hasn't grown at all since the steroids. He lies down to get a height measurement, so the height depends on hard they pull his leg.

Today he also had a renal ultrasound, urine bag for urine test and extra blood taken for extra blood tests.  Unfortunately the lab's computer was down, so the tech didn't know to put the blood on ice, so he has to get his renin level checked next week instead.

I called in his BP stats just now.  They'll call back and let us know if he needs to go on BP meds.  I think the answer will prolly be no.  His measured BP got lower as we got more competent at measuring it and making him fuss.  We don't get 120 or higher anymore or scary stroke 150 anymore (knock on wood) I removed the life-threatening tag from the first BP entry. Whee! It felt more good to do that than it probably should.

( More BP stats )

As I write this, Little T plays with the Tivo remote. He press the thumbs up sign and makes it go "Ding". He laughs then says "gah gah". This afternoon his doctor said, "If you see his blood pressure get this high again, call immediately. He's at risk for a brain bleed." His first diastolic blood pressure reading was 85, higher than mine, and he's a baby. Babies are supposed to have much lower blood pressure. Hypertension + low platelets = risk of brain bleed. His platelets are 91 today (basically the same as last week), fibrinogen 113 (down from last week). He weighs 10.132 kg. He is 69.7 cm long. His tumor is 21cm wide and 17.5 cm long.

Poor guy had his blood pressure taken again. Three times. It would have been four, but they can't take his blood pressure on the arm that has his tumor. So instead a full go is two legs and his right arm. A nurse had taken his blood pressure. Usually Evelin, a medical assistant does it. Evelin's always smiling, very sweet, even remembers Special K's name. Evelin is supposed to cover the front desk right now, but Little T really likes her, so they brought her back just to do his blood pressure. Little T grinned at Evelin and said a big "Gah" by way of greeting. Hope rose within me. I said "The nurse raised his blood pressure. He was fussing. It was just an off reading." C replied quietly, "She retried it before she took that reading." My little bubble of hope popped.

Evelin opened the cuff with the familar sound of velcro ripping. Little T peered down at the blood pressure cuff and furrowed his brow. He grunts in protest. My boy is smart. Evelin put on the cuff then jangled her phone in front of Little T to distract him. Not good enough. He hates the squeezing of the cuff and he'd endured it several times already. He opened his mouth to cry. Then an unexpected treat, she offered him the phone. He loves to play with phones. Evelin's a genius! He pressed the keys and pretended to talk on the phone. But he did look puzzled. He raised one eyebrow as if to say "Why do I get extra torture today?" If his blood pressure readings had remained at 85, he would have been admitted immediately to the hospital and put on blood pressure meds. Fortunately for him, his blood pressure was lower, but not normal.

The steroids are raising his blood pressure. He may have to go on blood pressure medication. We go in tomorrow to meet a new specialist, Nephrology (one we haven't met before though we've met a lot of specialists). They'll take his blood pressure again and discuss whether to put him on meds. If we do put him on meds, we'll have to decide if we want him to spend the first 24 hours in the hospital. His blood pressure could crash since it's very tricky to get the dosage right for a baby. If it crashes..bad things..I've seen it before..brain doesn't go there. He may need emergency care. On the other hand, a hospital stay also exposes our immunocompromised child to the nasty germs of the hospital. He has a bad track record of catching nasty germs and returning for a repeat visit. Gods, I hate making these types of decisions. But yes, it helps to know about them ahead of time even if we won't make up our minds until we're there.

We tried to buy a blood pressure monitor. We called around. Of course pharamacies have a wide variety, but none with cuffs that fit a baby. Adults needs their blood pressure monitored, not little babies. It's just one of the small ways that the world tells us that Little T is not normal, and should not be this sick. Little T cruises across the couch and shrieks with delight. He made the Tivo go "Bong". It's hard for me to reconcile that with "brain bleed". I understand it in my head, but not in my heart. But the fact that we can't find a damn pediatric cuff anywhere. We have to drive to the hospital to get one. Well, that makes me want to cry.

Little T's platelets came back today at 87, the lowest in a while. His hemo doctor talked about putting on Vincristine again, aka chemo if his numbers don't improve. Little T has been on high doses of steroids for over two months. His hemo doctor's not comfortable having on him high doses for too long due to steroids' long term effects. He's reaching the time limit where he needs to be weaned off, or put on Vincristine. Damn. His platelets were 112 last week, the highest in a while, so things were looking like we could wean him off steroids, and he was going to make it just on steroids. We're hoping that today's number was just an anomaly. We'll find out more next week. I can't help worrying. I need a hug. I need good vibes.

Through it all, Little T laughs and smiles, except when he flies into 'roid rages. He wants to play with other kids. He doesn't understand why he can't. The social isolation of the steroids is hard to take, but it will break my heart if Vincristine takes away his voice again.

Yesterday Little T's platelets were 112. Fibrinogen was 199, which is 1 away from normal. Woo hoo! Unfortunately his arm looks bigger, so we're maintaining the same level of steroids. Last week his regular blood drawer was off on vacation and the person drawing tried twice, but failed to get a decent draw, so we didn't get blood results.

Little T's platelets dipped slightly to 93 today, but we're starting to slowly wean him off steroids. The steroids have made him gain weight, now at 9922 grams, which finally puts him on the growth chart at just above the 5th percentile. He also grew 3 whole cm after a month of no growth. He's now 71cm almost 28 inches. He's the complete opposite body type of his sister who's tall and skinny.

I had a brain wave yesterday about how to get me to exercise: buy an elliptical machine. Then I can exercise while the kids watch tv or rouster about. I need to do weight bearing exercise to relieve stress, increase bone mass for my bordeline osteopinia, and so I can live to at least 100. C can't decide if it's a crazy or a wonderful idea. The machine will just about fit in our bedroom if we move furniture about and get rid of a chest of drawers.

I see two other alternatives for exercise:
1)pushing the stroller around. It's hard work with two heavy kids, and hard to get myself to do it. It's also very hard on my wrists.

2) take a class or go to a gym. Unfortunately Little T can't go to childcare at the gym due to being immunocompromised. And he'll probably be medically fragile for months, so I can't count on any solution which involves him going into the gym daycare. I could cut into the childcare time I have currently to exercise, but that leaves me less time to shop, run errands, write, shower, etc. Keep in mind that Little T is not supposed to taken out to public places.

I confess I've taken him to the library once or twice when Special K was going stir crazy and I got desperate. It's a large public place and he can stay in his stroller. As long as no-one touches, him or breathes on him, and he touches nothing outside the stroller, it's okay. But I have to bring hand sanitizer with me. Inevitably Little T wants to be picked up while I'm carrying a stack of books. So I have to ditch the books in the stroller, quickly sanitize my hands, and pick him up before he starts screaming. I guess I do get exercise in strange ways, but not for 30 minutes straight.

Little T platelets continue their slow climb upwards now to 100 and his fibrinogen was 130.

His weight jumped up to 9531. I think he gained a lot of water, thanks to the steroids. His cheeks are as round as a chipmunk's, and his arms and legs seem pudgy, but are actually more puffy when you take a closer look. He's so short at 27" and he doesn't walk, so he can be mistaken for a younger baby. I sometimes get weird looks when I say how old he is. He turned 15 months yesterday.

Little T inspires me to keep plugging away at my book. I'm primarily revising the first three chapters, and I've had little time to myself this week due to various medical apts, and Special K's cough, so I've fallen behind on my quota. I also haven't had good sleep for two nights in a row. Last night Special K lay in our bed coughing. The night before I ate something that disagreed with me and I stayed up half the night worrying about things I normally just put out of my mind since worrying about them does no good and just adds to the number of things I have to keep track of.

I wish so much for my kids, but I can't will them to health. It's amazing how much sleep affects my ability to deal with stress. And how when Special K cries because she's coughing, it still breaks my heart, even though Little T has endured so much more without a whimper. And I'm too keyed up to take a nap. I'm eating chocolate in an effort to improve my mood.

First Non-fiction book

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