Becoming more like House MD

I want to live in the world of House MD where most medical mysteries are solved in an hour. I'd like to think of myself as Cameron. Though to be honest I'm more like Foreman. I'm a scrappy minority. I really do care but in a medical crisis I'm very detached. My exploits in high risk medical deduction and bizarre medical conditions are confined to my son. But that's enough for me.

But sadly my life resembles House more than any of the other doctors. I deal with constant pain every day although it's in my wrists and not my leg. I took Vicodin for a few months when I broke my toe. But I'm off it now. House says "antidepressants make me fuzzy." Vicodin makes me fuzzy.

But without Vicodin, it seems I must add a new way to identify myself as House. I must use a cane. I doubt I'll go for a cane with flames as House did. But my cane will be cool in some way. I'll show pictures when I've chosen it. Like House, I need a cane to help prevent myself from falling.

Prekids I sprained my ankle about once a year and limped around on crutches or a cane for several months. Annoying but manageable. My neurologists told me that "hypermobile ankles" are part of my rare movement disorder, myoclonic dystonia. I just figured it was something I was stuck with like the jerking.

Then my son started receiving regular physical therapy and then finally walking at 2 years old. And I noticed that like me, my son had moments of great balance and then he'd suddenly fall down. At first falling down involved "a lot of head hits ground". Any sort of hit on the head resulted in massive egg bruises on his forehead due to low platelets. His hematology doctor said he was okay falling down walking, but if he fell from any height he ran the risk of brain bleed. Needless to say I watched him very very carefully.

I developed a sort of safe distance to watch. If I hovered over him he got annoyed. I and his nanny noticed he fell more when tired. I also noticed he fell when distracted or when moving from one surface to another. That's exactly how I stumble and sprain my ankle.

Prekids I used to hike on rough terrain and occasionally ski. Never a sprained ankle. I was being careful. I sprained my ankle or torn liagments

• stepping down from my house to my garage
  
• walking onto fake rocks near the Stanford barn without noticing
• tripping over a gouge in the sidewalk shortly after receiving a flu shot
• stumbling while pregnant - okay I think being clumsy comes with being pregnant
  

I broke my toe tripping over my daughter while my ankle was still recovering from a sprain.
I stumble a lot less with my son, because I have to be a lot more conscious of where he's going. I have never once stumbled while holding my kids.

But Little T's rapidly moving out of the "must watch with constant vigilance or he will hurt himself" stage. His platelets are normal. He has perfected the trot. My body already knows I need to be less careful. Today I stumbled and knocked against him and he merely swayed a little. A few months ago he would have fallen on his head. I was so proud of him. And sad that he needs me less in that physical way.

So I need something new to watch out for. A new baby would solve the issue but has other costs. We're fine with two kids. A cane will do. It will "provide additional sensory input."

I'm on the waiting list for a service dog from Canine Companions for Independence. So at some point I will have another creature to look after. One that I will always need to keep track of. Then I can ditch the cane and I will be less like House again. Being a big fan of House, I know that House kept a dog for a couple episodes. A very poorly behaved dog that chewed up everything even his Vicodin. House could probably use a service dog, but I'm not sure which organization would take him.

Blogging Against Disabilism Day: Are you or have you ever been insane?

A parent on my Special needs list sent a story about Depression in Mothers with Autism. Perhaps some of these mothers are truly depressed. But depression would make it very difficult to care for a child with autism. Depression is a mental illness -- an incorrect biochemical neurological response to stresses in the environment.

More than once, a friend who suffers from depression has said I'm depressed about my special needs son. I am not...anymore. I get sad sometimes. That is different. My life is stressful by any objective measure. And I think it is reasonable to be upset when you are the parent of a child has a debilitating disability or deal with one yourself.

Unfortunately I've also been medically depressed twice in my life. I had post-partum depression after the birth of both my kids.

I can't speak for anyone else, but depression feels different from grief or sadness. When I was depressed,I actually felt very little except hopeless. My post-partum depression was actually worse the first time after my healthy daughter was born and lasted several months. I felt I was the worst mother ever, not only disabled, but also just completely incompetent. At any moment, the state would discover I was "an unfit mother" and take my daughter away. If I did something right, it was only because of some book or someone else. If I did something wrong, it was the end of the world. I can see how for a few mothers who go for a long time without help, the end of the world might mean killing their own children. They are insane, but post-partum depression is a form of mental illness.

With my son, who was born so sick, being depressed meant feeling he was going to die (could be true) and I had killed him through my inaction (insane). Unlike with my daughter my situation was so dire that it was obvious I needed help.

I think this is the first time I have written this in public. The day my son was born, I did seriously consider dying. Not actual suicide. Just giving up. My son's birth had been very difficult and I was incredibly weak, so I felt I could just let go. But within hours after my son was born, a nurse whose baby had died came to talk to me. She helped me realized that a) I might just survive the death of my son and b) I still had a daughter who needed me. She didn't break the insanity --the feeling that I was completely to blame for everything wrong with my son took a while to fade. She did get me to promise to talk. She told me I was not a bad person to feel the way I did. That I didn't need to be ashamed. I started talking with her and then my husband, and eventually when I had time, I talked to a therapist. Day by day, issue by issue, I started to feel less to blame and eventually I could separate what was under my control and what wasn't.

I still feel grief or sad when my son is very sick, or something else
bad happens like my son gets denied a service or he or I suffers a setback. But depressed, no. I don't just sit there and stare at a wall. I cry and then I do something.

My reactions are sane as can be expected, given insane circumstances. My mothering body was designed to rally to protect my children from predators and try to treat them when they're sick for a few days. It doesn't cope terribly well with continued prolonged almost dying (fortunately that phase seems behind us), a infancy that lasted a year and some aspects of babyhood that are still ongoing at 2.5 years old. This is a wonderful and dreadful aspect of modern medicine. I have to laugh a little at those who claim the body can heal itself from all things. Left to his own device, or heck even left in a third world country, my son would have died at birth. Terribly sad, some might say depressing in the nonmedical sense, but it is the truth. Clinical depression is about untruth.

And no, I don't always feel things will get better. Sometimes this is in fact a rational
response. The doctors tell me some things will never get better. Depending on the day, I believe them or don't. But even in my darkest days, I feel small fleeting moments of happiness. I walk outside in the sunshine. My family hugs me. I feel love. I get frustrated. Grief, even grief that lasts for a long time allows for fleeting moments of other feelings. Grief is harder than not feeling at all and inaction which characterized depression for me. I struggle every day to try to make things better.

And here's where I find our current approach to mental illness to be so twisted. Our current approach is focused on if people "pose a threat to self or others." That is our requirement for locking people up. That makes sense to me. But how about the majority who are mentally ill, but not a threat i.e. need outpatient therapy? The first time when my post-partum depression was worse and lasted a lot longer, I posed no threat to anyone. Months went by and I sufferedin silence.

A lot of hand wringing over Vtech is about how Cho didn't get help. He did get help. He was seen by an outpatient facility who let him go "because he didn't pose a threat to others."

Sadly I think the current atmosphere makes it LESS likely, folks will get help for mental illness. People are watched closely for signs that they might "be a threat." Meanwhile outpatient mental health services are cut all the time. Most medical insurance drastically limit mental health benefits.

Unfortunately it's much harder to tell if someone is a threat than if someone is mentally ill. Strangely as my psychiatrist dad will tell you, becoming a mass murderer requires a certain amount of sanity, Cho did a lot of preplanning. He even sent off a tape before his second murder spree. In our society, premeditation means that the person is sane to stand trial. It requires an utter disregard of other people's lives to the point where you think you have the right to kill them. I'm not sure if that is sane or not, and it may well be associated with other forms of insanity, but it is not depression or schizophrenia or any of the other common forms of mental illness.

Yes, a few moms with post-partum depression actually kill their own kids. More likely are the moms who have fleeting thoughts about killing their own kids along with themselves and then feel awful about it, and the spiral down continues. And I know a call to watch out for moms with post-partum depression, because they might kill their kids would be so effective at getting moms to speak up about it. NOT.

Sadly the usual face of mental illness is not Cho. The face of mental illness is a homeless person talking to the air. Many homeless people have mental illnesses. A person who won't get out of bed for days because "there is no point". A mom who says "I can't love my baby." A mom who feels "I am the world's worst mother" and not for a moment as we all do sometimes, but for days and weeks. A person who feels pleasure in nothing. A person who honestly believes that there are strange faces peering out at from doorknobs and laughing. A person who feels that everyone is plotting against them. A person who is too scared of open spaces to leave the house. With the current stigma against mental illness, many are too ashamed to admit they have a problem until things get very bad indeed.

I have only experienced mental illness for a brief time and I was ashamed about it. I still feel a bit embarrassed to admit that I ever had this disability. And yet having post-partum depression was no more my fault than my movement disorder is. Both involve brain issues. With post-partum depression my brain just got scrambled due to hormones.

For me, a large part of that shame comes from "I'm not one of those who pose a threat." It's like admitting to having leftist tendencies while the McCarthy trials against Communism were going on. The huge association between mental illness and "being a threat". I would like to say that I feel this is totally and utterly wrong for most people and especially for those who receive the proper treatment. I'm not a doctor, but from what I read, it does not match the current medical understanding of mental illness either.

But yes, twice I've been truly insane. My strong beliefs about the world, my children, and myself were in direct opposition to reality. My insanity was only temporary, and I'm so grateful. Are you or have you ever been insane too?

Will be crossposted to Silicon Valley Moms Blog

Thanks for Autism Awareness month

To the people and parents living with autism, thank you for the gifts you've given me and my son!

My son and I don't have autism. But we're part of the special community lovingly called special needs. Your battles have give me several gifts. And for Autism Awareness month, I wanted to thank you and all those who have fought alongside me.

1. Thank you for showing the world that just because you move or act differently from most of the world, you are still a human being with intelligence and feelings.

I have a movement disorder. When I was a young child, I was diagnosed as mentally retarded by top neurologists. My parents knew otherwise. Top neurologists told them "You're just overachievers who can't accept your child as she is." Ironically my mom grew up with a sister who had Down Syndrome. So she knew a face of mental retardation. And gazing into my eyes, she knew that I was smart and told me so.

At school, kids regularly called me "stupid" and "retard" and "spastic". Only two teachers told me I was smart. I knew I was smart, but I also knew I perceived the world differently. It was not until I was 16 that a neurologist said "Of course you're intelligent. You have a movement disorder (a new exciting field at the time)." It wasn't until high school that two kids told me I was smart and treated me that way. My dad just said "Wait until college." Finally in college, everyone treated me as intelligent. It was a novel experience.

But it's a different world for my son. Lying in the NICU, extremely sick, I knew my son was intelligent and warm. He made a real effort to gaze into my eyes, though I could tell he was a huge effort for him to focus through the extreme pain. The day he was born, his nurse said "He's so engaging. He's a smart one." From that day, various nurses, doctors and therapists have all said similar things. He has multiple delays including speech, gross motor and fine motor.

He has come a long way, but no, he does not move or talk like a typical child. He also wears a bright red wrist brace and his left arm usually hangs stiff at an awkward angle. But he lives in a different world than I did. I'm amazed by my son's confidence and ability to engage people. Yesterday in the park, he sat with two boys prolly 8 and 10 and played in the sand right next to them. Everyone seemed comfortable. That was something I never had. Thank you boys, and thank you parents of those boys. And thanks to all those who worked so hard to change the world to make this possible.

2. Thank you for teaching me and the rest of the world how to better talk about disabilities. Thanks for standing up loud and proud. My parents came from the old school where we didn't talk about my disability. My parents still don't use that word. They call it my "shake" (I don't shake). I know it comes from a place of love. A place where admitting disability means shame. A place where they want me to live a normal a life as possible. I knew this and I never told my parents about the teasing. It was a pain I kept to myself. And I have greatly exceeded the doctors' predictions, so my parents did many things right. I know if they were parenting today, they would do things differently. They treat my son differently. We live in a different world.

3. Thank for pointing out that there is both joy and pain in having a child with life-long disabilities. You'd think that I'd have an easier time of it having an unrelated disability. But I struggle sometimes to tell the truth. I struggle because like my parents, I want so much for folks to see the joy, the intelligence, the incredible resilience of my son. He has taught me so much. But he also has his challenges. I want to say like any other child, because every child has challenges. But his challenges loom larger and are more serious than most children.

4. Thank you for sharing. Thanks to you, I have learned so many things about myself and my son. I have learned about a lot different resources in Silicon Valley. Thanks to you, my son has lots of therapy that has drastically improved his life. I take therapeutic riding which has improved my balance and wrist movement. I'm also on the waiting list for a service dog. I have learned about the world of sensory issues which many kids on the autism spectrum deal with as well as my son and me.

5. Thank you for the gift of hope and showing me a path to greater freedom. I've had hope for my son since the day he was born. But before I met you, I thought I was the way I was. I could not change in my late thirties. My wrists were degenerating every day. I kept spraining my ankle every year.

6. Thanks for teaching me a whole new vocabulary and different ways of perceiving the world. I learned these words for my son, but they have actually helped me a lot more. Thanks to you, I've been able to use the right words to talk about my issues. Before I stumbled around literally and figuratively and therapists said "We can't help you." Now they offer me exercises and suggestions. I have noticed a small difference. I jerk a little less. I hurt myself less by thwacking my hand on things. I stumble less. I have not fallen down in a month. It's a start to a long journey. I'm so grateful that I know I can change. And I'm still learning about myself. Thank you so much.

Crossposted to Silicon Valley Moms Blog

Little T is talking now

Sorry for my long silence. I broke my toe. I take Vicodin at night. I'd love to be House but I can't pop it without water. I can also only handle one at a time. Otherwise the tale about my toe is pretty boring except that I broke it tripping over my daughter. I have borderline osteopinia. A lesson to take one's calcium.

Also several pregnancies of friends and family brought up painful issues for me. I'm not ready to discuss them here in "the open." and frankly some of it is not my tale to tell. I may discuss it at a later time when I can separate more and talk exclusively about myself.

In the meanwhile my life goes on.

My biggest news is I have two bonafide talking kids now. Little T says two word phrases all the time but he remains laconic. He says one word if one word will do and then brings out another word if the first word isn't clear enough. With one exception.

For example he says "Songs" C starts singing to him. He says "Songs phone." He wants C to play him songs on his phone/mp3 player.

He says two three phrases. "Where Daddy/Mama go?" and "I love you."

I used to be the one he talked to least but in the past week he's discovered that talking is the way to my heart. He always has greeted me with "mama!" with great enthusiasm. Now he says "Mama, bus" "Mama, woo woo (his word for train)." Anything to get my attention. Daddy is not addressed in this way. Daddy is sometimes called for plaintively when not there "Daddy!" But Daddy is used for exacting requests "Where woowoo(train) plate?" If Daddy doesn't produce said plate he screams

Laughing in the hospital

Little T literally laughed in the ER. You'd never know from this picture that he was here in the hospital recovering from a life-threatening bacterial infection back in July 2005. He turned blue in my arms at home twice. He coded twice at the hospital. Teams of doctors rushed in and saved him.

But a few hours later my sister held him and he laughed again.

I no longer worry each day whether he'll still be here in a concrete sense. And I've been bogged down a lot by the constant grind of day to day care of a special needs kid. I've also been feeling depressed lately due to the medication I've been trying from my movement disorder. But this photo really lifted my spirits. It reminded me how far we've come and how he still laughs with that same wide open grin. I hope it lifts your spirits too.

Weddings are for hugging

We attended a lovely wedding last weekend and love was all around. My son and another little boy had a wonderful time together. So did all the children there. My husband captured this brief moment. But it was just one of many. It truly was a wedding of hugging and love.

My baby got new shoes

I was horrified to learn my boy was wearing shoes a size too small for him and yet he learned to walk anyway. What a hero! So we set out to buy him new shoes. They must be flexible, cushioned and most importantly shoes, he'd wear. My boy cares about two items of clothing: shoes and pants. He'll rip off disapproved choices in a hurry. But shoes and pants he likes are a dream.

We're still in the honeymoon phase of walking. Little T loves to carry things to me. Anything, a stuffed animal, a sock, whatever. Just so I can watch him walk down the passage carrying that thing. Little legs go straight up and down. A toy soldier's march. Not yet the proper gait of a real walker. I find it so endearing.

We spent most of Saturday shopping. We walked and walked and walked on a trek to find shoes for Little T and Special K. Who knew shoes would be so hard? Little T loved every moment of it. It's hard to believe he just started walking three weeks ago. I marvel at each new terrain he conquers. On Thursday, he scaled sand, but only ventured a few steps on grass holding my hand. Yesterday at a friend's party he strode confidently across the lawn. He still holds his hand high in victory sometimes but less and less.

He also wants my hand less and less. Occasionally he grabs me firmly, and I must follow. But most of the time he walks off. He never looks back. I must follow after him.

At the park on Thursday a little girl threw sand in his eyes. He cried and cried. I scooped him up, terrified. I examined his eyes closely. The tears washed the sand away after thirty seconds. He sniffed and pushed me away. He wanted to get up and play walk again.

When we go to other people's houses, he just walks off now. I must go find him. At this age, my daughter used to come back for a little hug and a sit in my lap. A little warmup. He's off as soon as he can. Sure, he smiles when he sees me, but if I try to hug or kiss him, he pushes me away with a soft annoyed grunt.

Now don't get me wrong. He's a very cuddly guy, but at sleepy time, naptime, story time. All times when he doesn't have shoes on. These shoes are made for walking.

Love is a battle

Pat Bentar sang "Love is a battlefield." She must have been singing about Special K and Little T. Special K call this "a battle." "I just decided to do a battle that day." They playfully wrestle all the time together and hug and laugh and laugh. Here's the video proof.

Little T walking

Here's my wonder boy's first day of walking. He still walks with his arm held up in victory.

Snuggling right from the start

Special K has snuggled her brother right from the start. Every morning she loves to climb in our bed and snuggle everyone. I got this on camera, because we were at a wedding in May of last year.

His hair looks so funny from the chemo. We call it his old man look.

Little T's growth is delayed but he's walking

Little T's bone age said he was between 1 year 3 months and 1 year 6 months. Chronologically he's 2 years and 1/2 month. This means his growth is indeed delayed. In the strange world of Little T land, it's a good thing, because it means he won't be a shrimp and explains why it took him so long to walk.

We're going to see an endocrinologist on Monday.

On the bright side he started walking on Saturday. He can walk household distances. On his first day he could already turn, pivot and squat.

Sorry I haven't been posting much. I have a cold and bad allergies. Everyone had health problems in September including my cats. Even my daughter got sick. I needed a bit more support than this blog currently provides.

Now as least my daughter got over her flu. My husband C is slowly recovering from his pneumonia. My cat Mori seems to have recovered from his respiratory infection. My cat Sephi has lost weight, and may have hyperthyroidism, but tests showed that she was on the high side of normal. So I'm going to wait a couple months. If she's still losing weight, we'll test her thyroid again. If it's still the same, we'll look for cancer.

Being total nerds, we're keeping Little T's food diary here on blogspot.
http://littletfood.blogspot.com/

Little T's not growing

Little T's GI doctor called us. To make a long story short, he shares our concern that Little T isn't growing.

Little T's weight and height have been basically flat for months and I've been concerned. Nice and proportional at 60% and a few months ago, one could argue the chemo or steroids were retarding his growth. However, he's been off chemo since May and on a very low dose of steroids for two months. He looks like a year old. Okay, he has the head size of a two-year old, but frankly all little kids have huge heads.

The doctor ordered a bone age test. I was all ready for general anesthesia like all his other tests. No, it's a simple x-ray. Hooray! If it's normal, my boy is just destined to be a pint sized fighter. If it's abnormal, he goes to see an endocrinologist.

We also have to keep a food diary.

Mother worry

Yesterday was the kind of wonderful day I'd always hoped to have when I decided to have children. Now that's not to say that these days are so remarkable. The amazing thing I find about both my children is that they are essentially happy.

I want to say despite the medical issues that rise and fall in our lives, but that's my deal. They seem a lot less affected in general. Special K says in a matter of fact voice "Well sometimes [Little T] goes to the hospital and sometime he doesn't."

Right now I'm not living under the constant shadow of life-threatening disease, but it's left its mark. I was never a worrier before, but now I've become one. When he gets a fever, I worry that he will have to go to the hospital. Okay, so far we're only one fever not going to the hospital versus four fevers landing him in the hospital. But when he got a fever on Friday night, I didn't take him to the ER despite the hemo doctor's recommendation, because he started playing. The ER is so germy. It's a great place if you're coding, not good if you're immunocompromised. Then he got better. So I guess I'm not so paranoid in that respect.

Today he has a rash all over his back and my first instinct was to worry and call the doctor. His doctor was on vacation and the other doctor who has seen him wasn't available today. Then I thought "it's just a rash." He doesn't have a fever. Sure he's whiney. But he was sitting around waiting for me. He hates waiting.

I used to be essentially happy also. And yesterday left me feeling more like I could be again. I see a long tunnel and happiness at the end. But I could never be happy worrying that my son's life was in danger. And I was miserable for months.

To be honest, I'm not sure if I believe that he won't be in the hospital again. No one can tell me if Kasabach Merritt will return or not. They guess it won't, but they've been wrong before. My son's tumor is particularly aggressive. I get different answers about how much the drugs affect his immune system and how vulnerable he is to the nasty secondary infections that landed him in the hospital before.

I wrote this because sometimes I feel this pressure to be happy, to be in my old life. Writing this all out helped me see it's just part of where we are right now. And it's okay. I do really enjoy the joyful moments with my children, but then worry returns.

I guess I'll live with worry a little longer. My worry level has definitely gone down too. I used to go up to code blue and actually take him to the doctor or ER and find out that yes indeed he was really really sick. Now I just worry a bit he might be seriously ill, but don't actually take him anywhere. This is in fact an improvement. As the months go by, I hope my mother threat level will go down further.

Love of Learning

Edited: My two kids' relationship goes in waves of fighting, or sweet sibling bliss, never in between. A couple weeks until yesterday we had a particularly long bout of fighting. Little T was smacking Special K on the face. She cried in pain and bewilderment. He'd climb over her to get somewhere else, kneeing her in the process. He'd grab her toys and scream until she gave them to him. "He's so annoying!" was Special K's constant refrain. Not exactly a great photo for Love Thursday. :) Then today as if on cue for Love Thursday, as we were driving to gym this morning, I captured more recent love.



Yesterday Special K and he had a playfight where they tumbled about and tangled legs, and laughed and laughed. After that he kept jabbering to her sweet nonesense. "I don't understand what he's saying!" Special K exclaimed as bewildered but also delighted. He follows her everywhere, tries to keep up with Special K and her friends. When she was sitting at dinner yesterday, he pulled himself and leaned his head against her several times putting his arm around her. Then today this moment. I hope love will reign for a couple weeks.


Here's the original photo of another time when love also reigned, but back in November. Special K is copying Little T, who is pointing at something and I'm sorry, but I've forgotten what he found so fascinating. So it shows Special K and Little T's love for each other and their curiousity aka love of learning.



For Love Thursday

Eating and growing

finished a couple more chapters of my non-fiction book. I revised an article about breastfeeding which I plan to send to a parenting magazine. I sent GREG off to two more publishers.

I signed up for the Foothill Writer's Conference.

We saw Little T's hemo doctor and she said that immunowise he's okay to do everything, which is great news. His blood counts were normal.

We also saw his GI doctor. He has lost weight down to 10.05kg. Some of that may due to losing the excess water he had from the steroids. He's grown 3cm to 76cm. His doctor says Little T is the size of an 11 month old. We had a long discussion about eating and growing. The upshot of it is it's a long long road and that we're going to gradually increase his dose of Prilosec to see if that stimulates his appetite. So far it seems to be working. He actually ate three bites of cheese for lunch as opposed to no lunch.

Little T stands on his own

In an ironic twist on the whole physical therapy thing, Little T stood for the first time yesterday. He screamed with terror the whole time, but he stood for a good 20 seconds. C and I were so amazed we just stood there cheering.

Yesterday he also stood on tiptoes at home for the first time. He leaned on a stroller to look at Tovar, [info]smileycynic's baby.

A very kind and generous PT on my special needs parents list drove down to evaluate him. Today distracted with toys, he stood longer and without crying. Honestly he has made amazing progress in the past two weeks. It's like he heard he might have to have physical therapy again and decided to get a move on. She said he has all the skills he needs to learn to walk and he should learn to walk on his own. She said that if he doesn't learn to walk on his own in three months then to get him re-evaulated. That was great news. And I was so grateful to her for coming down and seeing him. That was incredibly nice of her.

So I'll meet with the CCS doctor tomorrow and be all nice. I'll see what he says. Because Little T may well make a fool out of me and stand there too. I'll be glad if he does well.

I still think something's wrong with his gross motor movement or balance and he will need help. Something about the naked fear in his eyes when he stood for the first time which I never saw in Special K's eyes. Sure she was scared, but not totally terrified. She was also thrilled to try new things. There's just something about the things he does sometimes that don't seem normal to me. The way sometimes he just slowly falls and doesn't catch himself at all. Other things that I can't name right now. Maybe he won't need help right now, but later. Maybe he has sensory issues or something. I don't know what his problem is. I just know he has a problem. I trust my gut on stuff, because it's never let me down and when I ignore it, bad stuff happens. So I'll be watching my boy.

Little T's platelets stay low

Little T's platelets today were 87, so really about the same. That's what I thought going in. But I didn't hear what I was dreading: he would have to go back on Vincristine. I'm very grateful for that.

C came with me and really it's far easier to ask hard questions when he's there. So I asked what would put Little T back on Vincristine. The short answer is his platelets would have to drop below 20. His doctor actually mentioned Vincristine when his platelets were 211, but she tends to be a pessimist. The time before, his platelets were down to 40 and she was envisioning them dropping down below 20. Of course the long answer is his platelets do have to improve over time, but he has some time.

In addition he could get a higher dose of steroids. He's on 2mg/kg and he could go up to 3mg/kg for a short time.

Sadly he is definitely immunocompromised on this dose, so he can no longer be in occupational/physical therapy in a group setting.

He lost about 50g. I think it's the effect of the steroids. He eats more and loses weight. What a great diet except that you

My writing continues. I caught up on the days I missed and my non-fiction book is at almost 24k now. I also finished an article on my breastfeeding experiences with both kids, which I plan to submit once I get critiques. Please let me know if you want to read it.

"Uh oh" and good news about Special K

I'm having a really hard time not worrying about Little T going back on Vincristine. I know we can get through it. We went through it before. But I feel sad when I think about him getting another Broviac, losing his voice, getting weakness in his legs. I don't know why I can't stop thinking about it. It does no good, since there's nothing I can do. And I'll feel silly if he does okay with the steroids.

Yesterday Little T said "Uh" Pause. "oh" when I dropped his bottle. He also said "Bye" to Roberta when she left. For the first time he said two words in one day. He hands out his words like precious gifts. Is that because he spent months unable to use his voice due to Vincristine? Prolly not because he sure says "Gah" all the time. He also says "Ahh!" when he's particularly pleased about something. Like when he got hold of the Tivo remote. He also gave me a big grin.

And I just went and read someone's blog whose baby is in the NICU teetering between CPAP and canula. Little T was on the canula for a day or so. To the doctors' amazement, his cardiovascular system held up even with the strain of supplying blood to a vascular tumor that was literally bigger than his head. I had forgotten about how worried they were in the first days with lots of tests and close monitoring. I guess I wasn't looking back far enough. In some ways, my boy is medically fragile, but in other ways he's incredibly strong.

I should add that Special K seems cheerful again. She's been dry for days. She's rushing about. She's bouncing again.

Her preschool schedules a phone call for every parent at this time. During our phone call, her teacher said that Special K was "smart, sweet, talkative. She finishes her work. She looks out for other kids. She wants to be a leader." After we talked more about that, we learned she's bossy. She also sometimes talks too much, but after she was removed from circle time once, she stopped talking when asked. That's my girl. Though I wouldn't know where she gets it from...

The best thing about the whole call was when I asked "How's Special K doing with her brother being sick off and on?" and her teacher said "I had no idea about her brother." We had written a note about Little T's tumor in the little form about your child you fill out at the beginning of the year, but evidently the teacher didn't read it. I hardly ever see her teachers because Special K likes to stay for lunch and different teachers look after the kids for lunch. Special K is certainly capable of saying her brother is sick, but obviously that's not on her mind when she goes to preschool.

Mostly Special K interacts with her brother by making him laugh, holding his hand, and telling him or us not to pull her hair or not to eat things (yes being bossy).

I'm so grateful Special K is doing well. I feel a bit better now. Thanks for reading.

Little T's milestones

I'm trying to stay positive since Little T is still smiling.

On Thursday (11/10) Little T sat up from lying to sitting all on his own for the first time. Previously he could do so with a little touch from me on his hip to help stabilize him. He spent a good hour Thursday night in his crib sitting up over and over again with a big grin on his face. It's a huge effort involving rolling over and half getting up on his knees, but you try getting up with a huge left arm that doesn't really work.

On Wednesday Little T discovered the joys of pointing at people. Yesterday he discovered the joys of pointing at objects. He pointed at a picture of Einstein and clouds. Maybe he's telling me his dreams.

He's gaining weight. On Friday 11/4 he weighed 8.5kg. On Tuesday 11/8, he weighed 8.7kg This past Tuesday, his weight was back down to 8.7kg (19.18 lb despite eating more. His arm shrank some, but I dunno where that 100 g went. He's still very short at 69.7 cm (27.4 inches) far below the charts. He's still below the charts in weight too.