What a difference a year makes

I wrote this for Silicon Valley Moms blog

A year ago today I was not writing for the Silicon Valley Moms blog. Instead I was blogging on my personal blog about my son's upcoming radiation therapy. Three rounds of massive amounts of steroids, chemo and Interferon had not been enough. His GI system was failing. He wasn't growing. It was time to move to the next step.

Right about now we were sitting in the doctor's office dreading and hoping. At his previous appointment, his doctor urged us to try and postpone radiation therapy by two to three weeks. His tumor wasn't small enough yet, but it might be.

In my dreams, my son would avoid being irradiated. But even postponing seemed impossible. My son had been measured and fitted for a custom cast that would hold him in the exact position for the precise shooting of radiation rays. If we pushed it back too far, they would have to make another cast.

When we got home, we got voice mail that his radiation had just gotten pushed back by three weeks, because of scheduling issues. The maximum time before a new body cast.

A year ago today, radiation therapy was still up in the air. I cried after his GI appointment, because he was still vomiting every single day and food was just sitting in his stomach undigested. This was something I allowed myself to cry about, because radiation therapy was just too big.

Two days before the new radiation therapy deadline, his doctor said his tumor was small enough and radiation therapy was canceled.

In June, my son almost died from sepsis. An everyday germ had gotten through the IV line to his heart and infected his blood stream. He had bouts of septic shock. He experienced it once at home before I took him to the doctors. He turned blue and stopped breathing. I was incredibly lucky that I was able to tickle him and get him breathing again. At the hospital the monitors beeped like crazy. Loud blaring of "code blue" on the speaker. Doctors and nurses would rush in filling the room. Lots of equipment and bustle. I watched and prayed. He'd come back again, all pink and smiling. But it was clear the cure was killing him. As the bacteria died it dumped tons of toxins into his bloodstream.

Then in walked an unlikely hero -- a young intern on her first couple of days on the job. She stared at us like a deer caught in the headlights. Her eyes got even bigger as she saw his enormous file as large as telephone book. I watched her face sink. She said "I can't talk now." in a very flustered voice. I could smell her fear. Yet she saved his life by suggesting an alternative new antibiotic to the attending doctor. I will never forget her and I doubt she'll forget my son. A few months later, I saw her walking along with some fellow interns. She asked about my son and sounded like a professional doctor kind caring and confident. I felt as proud of her as if I had taught her.

If this all seems unreal to you, it is unreal to me now. We have passed through that stage. At least several months have gone by without hospitalization. Sure my son has plenty of medical issues, but they are more chronic and a lot less scary. He still receives 500 calories a night through a tube in his stomach, but he's growing and walking and talking. Save for his left arm that twists at weird angles and can't do a whole lot, and a tube in his abdomen, he looks like an extra small two-year old.

So why am I telling you this story? Well three reasons. One is to show the incredible resiliency of children. I can't think of a worse crime than deliberately poisoning your child. Okay, it was in the name of saving his life, but the drugs caused most of his medical problems. But I've found repeating "Children are resilient. Children are resilient." often helps me then and now when I feel like a terrible mom.

Another reason is to show that I've found on this journey that people help you in the most unexpected ways.

And finally I'm writing about it here. A year ago, I just couldn't have. Blogging about the medical drama of my son in a public forum didn't feel safe. This is a special place. I started out slowly in August with Where Everybody Knows Your Name about why I liked being a "frequent flyer" at Lucile Packard Children's Hospital. I continued with Top Ten Signs of Your Kids Live in Silicon Valley, continued with Blogging The Tumor about my personal challenges of parenting a child with many medical needs, and stories about my son and my typical daughter. I also wrote a few political blogs including the politics of health care

I sometimes received nudging emails from Jill, so I have definitely not been the most regular contributor. My posts tend to wax and wane with my son. His progress has been like that of a startup with its imminent failures and shaky triumphs. I suppose I should have been prepared for this as I met my husband while his startup was in code blue.

But again, Jill and blogging a counterpoint to her dislike of Sanjaya has forced me to post again. Well okay, I don't like Sanjaya that much. But things are going better. Still I don't want to jinx things too much and to those who don't know me, it might sound weird to be all proud that my son is finally on the very bottom of the height charts. But I am. It's taken a lot of hard work to get there.

This week is also my five year anniversary of blogging on Livejournal. I remember a fellow blogger at one of our Silicon Valley blogger get-togethers telling me quite earnestly that Livejournal was a blogger ghetto. Well maybe I'm a ghetto kid, but I've found a sense of community there and here.

I've met some amazing folks through blogging and reconnected with others. Thank you for reading and writing. You've helped more than I can explain.

Silence about Disabilities=Shame

I thought that attitudes towards disabilities were changing. I thought that what made things awkward, about talking my son was that for a time he was not only disabled but in danger of dying. The infant death taboo is a whole other post.

But when I read this article "What's the greatest challenge of having a daughter with autism? Telling people about it. , It makes me sad. As someone who grew up with a movement disorder, it's the same attitude my parents have. My parents occasionally talk about "my shake" at home but they don't use the proper term or say I had a disability. I don't actually shake at all. I jerk. My parents very rarely talk about it to others. Like the writer of this article, they're not ashamed of me but hope they can hide my disability from others. That people will only notice my good qualities.

Unfortunately, the world notices differences. As a child other kids called me names and people stared. They sometimes stare now. I don't have any problems with speech like Paige, but as a child I didn't know the words to defend myself. I grew up feeling ashamed of my disability. My parents occasionally told me they were proud of me, but I interpreted their silence as shame about my disability. Some people felt awkward around me not necessarily because of my disability but because there was this elephant in the room that we never talked about.

Parents think they're protecting their children by not talking about their disabilities, but really they're leaving their child unprepared for the world. For a time I was very angry with my parents.

Now with a son with an unrelated physical disability, I understand the awkward silences. I understand the looks of horror. Sometimes people's eyes fill with tears. Sometimes people spill their life story. It creates odd moments sometimes tender and sometimes so awkward or maudlin I wish I could just leave.

My son has a giant vascular tumor in his left arm that is currently in remission. The details are horrifying. He has multiple delays and his left arm barely moves. But those are his problems. I want people to see my son as the bright, social boy he is, and not his disabilities. However, his arm is a part of him as surely as his sunny smile.

For a time I stumbled around, lost in medical jargon. I didn't have easy words because my son has a disease that no one has heard of. No one understood me. Later, I realized I needed to keep it simple and use easy words like "tumor" "speech delay". Most people don't actually care about the details. They just want to have some understanding of what they see right now.

So I talk about it in a matter of fact way when things come up. For example the other day I was talking with friends about first haircuts. I said I put off cutting my son's hair for far longer than I prolly should have. I was afraid he might go through another round of chemo and steroids, so why cut his hair when it would just fall out? My friends have gotten used to this kind of talk and it's just part of the conversation.

I won't lie. I have lost some friends. Some friends who say "it's too hard." "why do I have to talk about this stuff?" aka my life or simply avoid me. You don't know who can handle the truth and who doesn't. It has surprised me who left and who stayed. But I would rather have friends who truly accept and appreciate me and that includes my son.

Everyone has good days and bad days. My bad days include trips to the ER. My good days include one of the happiest people I know. I wouldn't trade my son for anything. And so every day I model for him what I wish I had when I was growing up.

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.

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.

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.

I celebrate my son's half shoe size successes

My son has grown half a shoe size. I know for many parents this isn't a cause to jump up and down and celebrate, but for us with a child who didn't grow for months, we're so thrilled.

On Friday, we had my son's Individual Family Service Plan(IFSP) for Early Start. We discussed his progress for the past six months, or in our case the past nine months because his IFSP got delayed like everything else. ;) The report and the goals outline which services he receives.

His ISFP report outlines how my son had another relapse of his tumor, his third, and a secondary infection. After he started chemo and massive amounts of steroids, he stopped talking if one word a day counts as talking and he stopped pulling up. He started pulling up again a couple months later. He didn't meet his goals to walk or to be weaned off his g-tube, but he's worked hard.

He met these goals:

get up on his knees, cruise 90% of the time, reach up on his toes and walk with assistance of another parent or a walker - hooray

He can also stand independently if standing for 10 seconds counts. :) Okay it doesn't, but he's working on it.

He initiates conversations. He says these words all the time "go", "ball" "bubble" "bye" "yum" "uh oh" "wow" "yeah" and "mama". He says "backpack" "car" and "dada" maybe once a week. He'll say "mo" (more) "baba" (bottle) "fire truck" "bird" and "ca ca" (cracker) if you say the word first. He understands quite a bit, but other words he won't repeat.

I list these individual words, because now I'm a parent, I no longer believe the quote "The limits of your language are the limits of your world." But these words surely reflect his personality. He's a "yeah" guy not "yes" and "wow" is actually "wowwwwwww", a term of great approval. "go" tells me to go outside where he wants to play all the time and rush around. He's so active. Backpack reflects his and his sister's passion for Dora the Explorer.

He made some progress towards feeding. He eats like a typical toddler now instead of examining each bite like an inspector. He eats 3 tablespoons at each meal instead of 1-2. He drinks 3 oz of formula a day instead of 1.

His goals for the next six months are to walk, talk more and to eat more.

And to me, half a shoe size symbolizes where we are right now. It's not the full shoe size of typical kids. But when I think about where those little feet have been in the past nine months, I feel incredibly proud of what he's accomplished.

Crossposted to Silicon Valley Moms Blog

Blogging the Tumor

Blogging has saved my sanity in the darkest period of my life. I could not talk about it, though the problem was incredibly large and led to lots of staring when we did venture out in public. “My son has a life-threatening tumor.” It took me almost a year to be able to say that phrase. A year in which I flailed around swimming in medical jargon. I used terms like Kasabach Merritt Syndrome, hemangioma, and blood-clotting disorder. Nobody understood what the hell was going on and often they were afraid to ask, so they settled for staring or unfortunate misunderstandings of the problem. I’ll never forget how someone told me very sympathetically how her sister had bad eczema as a child, but she had gotten over it and my son would be fine too.

My son only added to the problem. I only brought him out in public when he was relatively healthy. When he was on massive doses of steroids or chemo, he had to avoid people, because his immune system was compromised. But the effects of steroids linger. Puffed up with steroids to a cherubic ideal of a fat baby, he laughed and smiled, so happy to see people. How could he not be healthy when he had such fat cheeks and a round belly? When people asked me, “How are you doing?”, I often said “Okay” or “Hanging in there.” I didn’t have any energy left to explain, not even to friends.

Finally my little ‘okay bubble’ burst when he had a relapse and his tumor regrew. It’s pretty obvious things are just not okay when your son is in the hospital receiving chemo. His fat belly remained, but his cheeks grew gaunt, his arms and legs whittled down to sticks. He looked the picture of a Third World starving baby shown on tv. The few times he ever went outside, people would stare and if I saw them staring would ask uncomfortably “How old is he?” When I’d reply, they’d look away. I wish then I’d be able to tell them I was not starving my own child. In fact at that time and up until now 600 calories pumps into his stomach every night through his G-tube, a small plug that connects directly to his stomach.

The chemo killed his appetite and destroyed the lining of his stomach. The steroids ruined his digestive system. He relapsed another time. He had infections. More hospital stays. His tumor has finally started shrinking, hopefully for good leaving in its wake lots of collateral damage. I’m still recovering.

But back to blogging. During that second relapse when I was so brokenhearted, one of my friends said “Why don’t you blog about it?” I’d been blogging in a desultory way since 2002, back before it was even called blogging. But not regularly. I didn’t have a blog voice. Now I had something to blog about. I blogged about what was happening with my son. But of course I discovered I had more to say than just a medical journal. I also disclosed more than I would have in person. This medical stuff is so hard to talk about. It makes people uncomfortable. And I have this very English tendency to just shut up when people look uncomfortable.

To say it was therapy both trivializes what I was doing and therapy which can be deep exploration. I’m learning to talk about a deeply taboo topic, infant illness. If you don’t think it’s taboo, ask yourself how many celebrities, except tough football players admit to having sick children. Now I can talk about it out loud. I no longer say “I’m okay” when I’m not. I no longer hide my son’s condition behind medical jargon. I’ve never spent a second feeling ashamed of my son or quailed from his long list of medical conditions. However for a long time I took other people’s reactions as shaming.

Last year I even put a link on dotmoms among the 600+. And I reached the point where I started to get a little traffic. Then spam arrived. I was struggling to feed my son. He was losing weight and vomiting. And I’d log into spam about diets. Now I could have complained to blogger about this outrage, but instead I ran back to more private blogging spheres.

A few folks found me anyway and commented on my posts about feeding tubes, the NICU, tumors, and other special needs stuff.

Then lately several nudges at once brought me back out. This blog. Last week I met Badgermama at a social event unrelated to blogging. Lots of post about blogher. At our photo shoot,I talked to Glennia about how hard she tried to get parents to connect to parents in the hospital and largely failing due to the hospital not getting that parents can't do two months of training. I gave Jill the Reader's Digest Summary of my son, because she asked, and I felt okay. Not comfortable because it's not a comfortable topic, but not worrying that it's not comfortable. I've crossed a new threshold.

I listen when several things happen at once. I start to believe perhaps enduring spam is worth venturing forth into more public cyberspheres again. So here am I. I know how hard it is to have a child with serious medical condition/s. I welcome your comments, but not your spam. I've only gotten this far because other folks broke the silence.

Where everybody knows your name

The place I've visited most often in the past two years is the Lucile Packard Children's hospital.

I find the place both very comforting and incredibly annoying.

I find it comforting that many of the people there recognise my son (and sometimes me) and say hi. Folks from the NICU which was two years ago still remember him. I love the people there. Almost everyone seems to be kind and keep in mind how stressful it is to be there with a very sick child.

When my daughter was visiting there a lot at her insistence, because we didn't have reliable childcare at the time, but clearly half not wanting to be there, Child Life (a hospital service) gave her an enormous stuffed dog. She named it 'Dell'. Dell has an active life and still accompanies my daughter on adventures. Never mind his size, though she can barely see over his head, my daughter lugs him around. Sometimes when Dell is not around, she'll say "I have a dog named 'Dell'." It will be a little while before the other person learns that Dell is in fact a stuffed dog.

I can't stand the parking garage. Even after almost two years, I still don't know how to park there. I often wind up parking in a compact space squashed between two SUVs. Normally I'd grouse at the SUVs, but I can't really blame them since there's nowhere else to park. About a year ago I backed out of a space in a hurry and completely scraped the side of my car on a pole, ripping off the side of my passenger mirror. I replaced the mirror and kept the scrape. I figured I would just do it again. I haven't so far, but I believe the scrape wards off the poles.

I like the carpets. Somehow they seem nicer than linoleum. I like the art on the walls. My daughter comments to me about Babar. Sometimes entire stories are told from those pictures.

I like how you can sit outside with your food, but I dislike how they are always doing construction. All of Stanford is under construction for some reason all the time. And I can't stand the constant noise. The building was built what fifteen years ago, but it has the thinnest walls ever. You can hear everything everywhere. The construction, the people in the next room, the traffic outside. My son sometimes manages to sleep when he stays there, but I never really managed much sleep there.

I love the kids' faces on the big posters that proclaim that Lucile Packard is the top hospital in the country. It used to say top ten, but it slipped down to thirteen. It's okay I don't hold it against you. I've met a few of the kids on the posters. Like all professional photos, the kids didn't look as good in person. But they were still very cute. It was both comforting to see them as real people and sad that we were there so often that we happened to meet them.

And I'm very glad we're visiting the place a lot less often.

Little T has severe nerve damage, roar!

Sorry I haven't posted for a few days. My heart broke again. I went to Little T's Hand apt on Wednesday and the report said in black and white. "These electrodiagnostic studies provide evidence of severe loss of sensory and motor axons in multiple nerves in the left arm."

This doesn't actually change anything. I mean the boy's arm barely moves. And in fact since the report the boy now slightly twists his arm inward. But somehow I let myself believe what the EMG doctor told me. Why this stupid doctor (not his hand doctor BTW who's really wonderful) told me this. I dunno. I believed him, because I'm his mother and I believe in my boy. But believing he had moderate damage for a week and then hearing he had severe loss was crushing to me. I feel horribly betrayed and sad.

On the day Little T was born, they told me they would have to cut off his left arm to save his life and I honestly thought if they did so, he would die. Now I would have just refused the operation. That day I accepted him as he was, a one-armed Popeye. His arm no longer resembles Popeye's, but he's still a fighter. I think his arm will do more than what it can do now, which is mostly hanging by his side, but I'm not sure what that means. Whether that just means he pushes it around or not and makes it grasp and ungrasp things with his right hand. I'll leave that up to him and what develops.

For Little T, life is fun and a big happy game, but Little T is not a laid-back kid. He's always pushing himself. He's aggressive. He roars. When he falls down, he literally gets back up and tries again. So that means that as his mother, I can't give up on his arm whatever the numbers say, because he wouldn't. He's just too young to understand what his arm can do.

But I can't live in fantasy moderate nerve damage land either. It's a very hard thing. The past couple days I've cried several times. I think not just about his arm. But because this also feels safe to cry about. I wrote in my book that I rarely cried when he was seriously ill, because crying meant facing his death and that I couldn't bear. I think that's really what I'm still grieving.

Grieving not being able to fix things. I never dreamed I'd have the perfect baby, but I think I did dream I could be the perfect mother and not make mistakes, especially not mistakes with scary names and consequences like brachioplexus. We still don't know if that's what he has. We may never know. I will always know he should have been born via c-section.

And being Little T's mom, well being mom to any child, means that you have to leave your heart wide open to all possibilities, to dream and strive for your child's potential, while looking at him here now and loving and working with what he can do today. Little T has so many unknowns, more than most, so I'm resigned to more heartbreak. I read these books about special needs kids that don't match me. I never feel sad about him. And when I go to the hospital, I always see kids that look so much worse than he is and feel so grateful for his vitality, his zest for life, how incredibly charming he is. I always feel joyful to have him around when he's happy which is most of the time. And like any mother when he's cross sometimes I wish I could run away. Rather I'm well aware of the challenges of being disabled in an ableist world. I want him to be happy with who he is. I want to make sure I've done everything I can to help him accept himself, to live up to his full potential and to make his path easier. There's still a lot of soft biogtry of low expectation for disabled people. It's changing, but I still encounter it from time to time.

But today I woke up still feeling sad but lighter. I don't think about the past much except when the present reminds me of it. I used to blame myself for that. Why do I think about these depressing things when I want to forget them? But a couple weeks ago C asked me "What is your brain trying to tell you?" Oh! Light bulb moment! My subconscious is trying to tell me a life lesson from my past.

My past also tells me we got the most crucial bits of that bits of that day right. I saved his life. I refused pitocin which would have killed him. He didn't get surgery which would have killed him. He's still here by some miracle. I felt so all alone that day. I stared at the ceiling. I had never felt so raw and broken in my life. I wasn't sure if I wanted to live. Then a light - a nurse whose baby had died came to talk to me. She was still alive and actually working. And I realised that even if the unthinkable happened, I might actually be okay and I started to get back up.

Today I feel less alone. I have C now. We have figured out how to support each other in the ways we need. I also know other parents who had kids with life threatening issues with whom I've talked with honestly. I have close friends without kids who will listen, though of course none of them really understand. I have some kind parents with kids who will help babysit Special K when my nanny isn't available and I need help. But I still find myself crying with Special K and Little T in horrible pain not sure what to do. I didn't call any friends the past couple days. I didn't know what to say. I dunno if there's anything to say.

C says that "a support system doesn't make this stuff any easier, it just makes it so you don't fall off the deep end." I guess that's true. I didn't fall off the deep end. And I did just figure out like 90 seconds ago that maybe I should let my friends know beforehand when we're doing these upsetting tests and appointments, so they can call me and ask what's up. I tend to just avoid thinking about them until at the last minute, because I know they'll be bad news. But it'd prolly be better for my mental health. Our next upsetting appointment will be our meeting with the brachioplexus doctor on the afternoon of 8/7.

Anyway I'm still sad, but I also wanted you to know I've started to roar again. I leave you with

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.

Elliptical exercise

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 at 15 months

Little T platelets continue their slow climb upwards now to 100 and his fibrogen 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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Milestones meeting

We reviewed Little T's goals on Tuesday. Little T exceeds expectations in all areas of review. He's made remarkable progress, considering he's been hospitalised five times during the review period (six months) Yes, Little T has goals written down on paper that the state government (Early Start) pays to have met. It's all written on our IFSP (Individual Family Service Plan), because every government program must have an acronynm.

When we completed this IFSP on 5/13/05, Little T literally just lay there. Five months of chemo had ravaged his body. He couldn't lift his head. He made no sounds. He gazed at you with bright intelligent eyes, but no-one but his family and a few doctors and nurses who knew him well had any indication he was anything other than "delayed".

A lot of the goals are devised in conjunction with the child development specialists, and like any speciality they have a syntax all their own.

For those who want to see your tax dollars at work, need to fill out an ISFP, or are just curious about Little T's progress, here are the details.

Outcome: Language Skills: [Little T] will say two to three words - met!
Criteria:

Little T will

• increase vocalizations, babble in response to parents interacting with their own voices. [sic] - met
• use "mama/dada" specifically - Sadly, no. He babbles "dadadada" and "mamamamama" and sometimes I think he might be calling me, but I've never heard him say "mama"
• wave or respond to bye-bye. - met
  

Outcome: Gross Motor Skills: LT will be mobile without assistance - met!
Criteria: Little T will

• demonstrate improved head control in all positions, turning head freely from side to side. - met
  
• play on stomach, bearing weight on right arm and left arm as able. - Needs improvement. His G-tube makes stomach play uncomfortable.
• roll from stomach to back and back to front - met
• maintain a sitting position using his arms to prop for balance as needed - met
• bear full weight on legs in supported standing - met
• with adult supervision, stand without adult support while holding onto or leaning on a small piece of furniture (couch or coffee table)- met

Outcome: Adaptive: Little T will feed himself enough so that he gets enough calories - Didn't meet goal at all, but did work towards goal. Feeding issues take a long time to resolve and the five hospitalizations set him back.

Criteria: Little T will

• Increase amount of feedings taken orally under supervision of physician. - Met. He now takes 8-10 oz a day up from 2-4 oz a day. Though to met his caloric needs he needs to take 32 oz a day.
• learn how to feed himself finger foods - met
• learn how to drink liquids by himself - met and just days before the ISFP meeting
• learn how to drink from an open cup - not met. He needed to meet the goal above first.

Thida will learn how to feed Little T solids. - met

Outcome: Little T will put objects in a container and take them out again. - met

Criteria: Little T will

• bring objects to midline and transfer them from hand to hand - not met
• work for a toy during play/retrieve an item using other materials - the first goal was met, but not the second
• uncover a hidden toy during play - met

Outcome: Little T will hold and manipulate an obiect with his left arm and hand. - not met

Criteria: Little T will

• move his left arm and hand voluntarily - not met -he can shrug his left shoulder and curl the fingers of his left hand, but that's about it.
• reach for an object with his left hand - not met
• grasp an object with his left hand - not met You can curl his left fingers around an object and make him hold something, but that's not really grasping an object.

The goals he didn't meet are continued on the new IFSP and he also has new goals for the next 6 months. The new language goals don't sound like English to me, because now he's getting speech therapy and his speech therapist outlined them. Actually, I'm not going to list the new goals. It feels like I'm pressuring him if I do. I know he can't read, but we can. In six months time, I'll report back how he's doing.

Spoons, the perfect radio station, Baby E

spoon story from Shadesong to describe folks who live with chronic illness or debilitating disabilities. When I was pregnant with Little T, when I was healing from Little T's traumatic birth, I guess I had fewer spoons. Though the analogy isn't quite fluid enough to really work for me personally. Ironically I'm too tired to think of a better one, except a battery though that's hardly original. Any thoughts?

I've been searching for a radio station that I can customize and actually works. That perfect match. Looking for a girl like you to come into my life, Pandora Maybe you're the one I've been searching for all my life! Thank you Neil Gaiman!

Julie produced this wonderful spoof of a Baby Einstein video. Even if you're not a parent, I think you'll find it funny.

Running monologue

Special K has entered the running monologue stage of development. For example today she told me that my slippers were black, but they could be green like leaves a frog or red like a fire engine or brown like a bear. And many different things about the colours it could be. It went on for a couple minutes. I can't remember it all. Then as we were walking along to the library, she told me about climbing trees and how you need a long ladder to climb trees.

It's really pretty neat to see inside her mind. Though still sometimes when I ask her a question usually related to matters of time, she replies "I don't know the words." Time appears to be relatively fluid to her. A lot of things happen last year including things that happened yesterday.

Little T's platelets were 90 today and his fibronogen was 120. We were disappointed, because we hoped his platelets would be better instead of about the same as last week. We'll continue his steroids at the same dose and hope that next week will be better.

We go on Wednesday next week instead of Tuesday. The hematologists are going to a conference in Atlanta. I asked, "Don't doctors usually have conferences in more of a vacation destination?" Little T's hematologist answered "The conference was originally going to be held last week in New Orleans." Ouch.

Little T's slow rise

I guessed Little T's platelets would be 95. They were 97. That's not normal, but also not dangerous. If his platelets continue to remain at this level or above, he's going to continue on the same high dose of steroids for another month, then gradually wean down.

He's finally started gaining weight again up to 9256g, though the steroids are definitely stunting his growth, because he hasn't grown at all since he last measured on 11/16 when he measured 69.7 cm.

We had to wait over half an hour for his blood draw, but we had Sean again, so once again he got it smoothly on one try.

We're going down to once a week appointments now. Phew!

Despite the high dose of steroids, Little T is still laughing, scooting, and babbling most of the time. He only flies in rages about twice a day. His arm continues to shrink and his elbow now bends ever so slightly as the tumor slowly shrinks milimeter by milimeter. Though I am concerned that with the steroids, he seems to have lost his desire to walk or cruise. When I try to walk him, he won't hold his legs straight. However he pulls up on C and me all the time. Go figure.

Little T's platelets and MRA

Unfortunately his platelets have dropped to 67. Below 50 is when we need to worry about him pulling up and cruising, but it's a downward trend. Also the clinic is closed on Friday, so instead of going in then as we would normally with a number like that, we have to wait until Tuesday.

The doctors have increased his steroids to 2.7mg/kg, so I expect him to get angrier. Right he flies into 'roid rages 2-3 a day. He already has a "moon face" from the steroids.

Poor guy had 3 sticks today to get an IV in him, because he had to go under general anesthesia for an MRA(an MRI with contrasting dye) to look at the tumor on his left arm. The MRA showed that his tumor is smaller than his last MRA in April. Not too surprising, and that it's not growing into anything important.

He came through much better than we expected. For the first time in numerous times under anesthesia, he woke up before he got to the recovery room. By the time I got there he appeared alert and pointed at me to try and get me to pick him up. Within five minutes he was drinking and then proceeded to drink 6oz over the course of an hour. That's a new drinking record for him. Poor guy he'd been off food since midnight the night before. And usually we give him a 600ml feed overnight through his g-tube.

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.