Sunday, September 30, 2007

Fun with supplements

In our ongoing effort to treat Little T we're seeing a "whole wellness doctor" who ran some tests to see what supplements he needs. The theory is he gets enough calories between what he eats by mouth and his g-tube but his body is so depleted from destroying his tumor and rebuilding his arm that he runs out of nutrients he needs to convert fat into energy.

As always we tried to balance what he'll actually eat versus what he needs

So yesterday we bought

  • Cod liver oil - Not just any cod liver oil but tested for mercury and other containments with a lemon flavor. It tastes like lemon oil with a hint of fish. It's actually quite nice. Today Little T asked for a second teaspoon even though his daily dose is one.
  • Gummi Vites -2 Gummi Vites provide not as much minerals and vitamins as his doctor wants but he wants it. His sister asks for them everyday.
  • Organic Carrot juice - a great source of beta carotene aka vitamin A which he needs more of and loves
  • Grapeseed oil for high heat cooking - apparently canola oil aka rapeseed oil is bad for you at high heat. Who knew?
  • Bifidus - We bought this earlier. It's a probiotic powder. We had to experiment a while to see how he'd eat it. It's a tasteless white powder but very goopy so it won't go down the g-tube and he doesn't like the texture. Today it went down easy in cream cheese.
Things we're still having trouble with
  • Zinc - The Gummi Vites provide some but he needs more for healing. I thought we had some good zinc lozenges from Trader Joe's that also provide Vitamin C. However today I discovered they also provide slippery elm aka aspirin. He refused it today so we need something else he will eat. Probably another trip back to Whole Foods to see if they have zinc lozenges without slippery elm that are more palatable to him.
  • Whey protein - He needs it to help him build more muscle mass. All his muscles are small and underdeveloped. We may have to keep searching for the right whey powder. The whey powder industry seems largely unregulated and I'm concerned about growth hormones and toxicity. So far he didn't like it in milk. I'm not sure if it's the whey powder or the medium. Special K said "it tastes bitter."
We'd also supposed to give him more nuts avocados and beans.

Being a complete geek I have a google spreadsheet to keep track of which supplements we're all taking each day.

Anyone have any tips for kid-friendly zinc or whey powder?

Friday, September 28, 2007

Dear smiley face school bus driver

You signed your note with a smiley face instead of your name. From how you wrote your note I presume you're the driver that will be taking my son to preschool.

Thank you most of all for taking the time to drive to my son's house ahead of time to make sure you know where it is. I can not tell you the thoughtfulness that represents to me.

Thank you for leaving me a beautifully written note with clear directions on what to do and your name and number.

I still don't know what you look like but I at least know you don't look like this: since you're both female and I can't imagine him leaving a note like that.

I hadn't realized until I read your note that was my secret fear. Thanks smiley face!

Mom sending her 3 year old for the first time on a school bus

Does anyone have any tips for me for further school bus happiness?

Tuesday, September 25, 2007

Just another ordinary miracle on Monday

Little T is going to preschool on Monday.
Little T is going to preschool on Monday.
Little T is going to preschool on Monday.

Yes I have to write that three times to believe it. I know it's ordinary for most folks. But three years ago I wouldn't have believed it. It's a miracle to me that my little baby has made it this far. But even at 1 week old the look of determination on his face struggling to survive showed he'd go far.

He will go four mornings a week on the special ed bus. I think it's the right preschool for him. It's a preschool for kids who are cognitively and socially typical but have physical special needs.

Four mornings a week I will have an empty house.

Lest anyone think I will sit around and eat bonbons since after all we SAHMs have nothing better to do. I still have some ongoing issues to deal with. Ironically much of these involve ensuring his success in preschool and beyond. Oh yes and I have my own sadly neglected health issues to deal with.

Three years ago my baby was still in the NICU. We went to the 25th NICU grad party this weekend. Doesn't he look like a preschooler now?

When I said I was going there my dad said "I don't like to look back and remember." I think my dad is missing out on seeing how far my little guy has come.

An apology to Louie

Dear Louie
I am very sorry. I let you down. I was scared instead of trusting that you'd keep me safe. You've always kept me safe. I didn't mean to. It wasn't something I thought about. Falling down when in doubt is what I've always done. Trust is harder for me.

I still remember the stunned look on your face as you stared at me lying hurt on the ground.

I also want you to know it's not your fault that I came off or that you spooked. The log falling down was pretty startling. The log crashing against the metal garbage can was more than any guy could bear especially a sensitive guy like you. Even so you didn't buck or anything. You just backed up twice. I didn't expect the second time or the incredibly loud noise.

My husband is also really sorry too. It's why I've held off posting this but I think my apology to you is long overdue.

You are indeed a very special horse and very trustworthy. I do trust you. I will really try to do better next time.

Lots of love

My son already outperforms me

Hooray my son's EEG is normal!!! I'm totally stunned! *My* EEG isn't normal. I guess that makes him smarter than me. But isn't that every parent's dream? :)

Monday, September 24, 2007

Reading to Dogs

I'm excited about the Reading to Dogs program. I still remember my sense of wonder when I learned how to read. How suddenly all the billboards in London had messages I could READ.

I taught my sister and my daughter to read. I was involved in a literacy program back in college. I just think anything anyone can do to encourage reading is very cool.

Friday, September 21, 2007

Maybe another miracle today

Preliminary results look good for Little T. Not only no seizures found but the neurologist said his EEG was "completely normal." I'm still wishing on my CCI dog star that he doesn't find anything on closer examination.

I don't have a normal EEG. So if after all he's been through my son's EEG is normal I consider it a miracle.

Thursday, September 20, 2007

I got a CCI dog at the hospital

A CCI service team that I met at the graduate pool party was at the hospital last night for a pet therapy session. What a total transformation. He was Mr. Service Dog lying still in a proper down position with his head held high. He clearly loves his work and to play. What amazing dogs!

Still waiting to see if my Little T wish came true. Maybe. We'll find out more later. But having my service dog wish come true unexpectedly and not at all how I planned has given me hope. Aren't most gifts like that?

When will a president care about the fat and sugar offered to kids every day by the US government?

I am worried that the school will make my daughter fat and unhealthy with bad food choices. Is she going off to college? No she's going to kindergarten.

I looked at the school lunch menu for the entire months of August and September. I see items I might feed my child once in a while like hamburgers but not every day. During the Reagan era ketchup was declared a vegetable but I thought perhaps naively that things had gotten better with all these drive to get healthy. In fact at the bottom the menu declares in bold letters "Off to" (in an apple) A great Start" I also thought I could control whether or not my daughter ate lunch at school by choosing to give her money. No now they have a new convenient "card swipe system" so my child needs no money at all. It's a heavy burden for a five year old to make healthy choices and I am disappointed but unsurprised that I see so few healthy choices to make. The government rails that kids are fat and then offers them a host of fattening food subsided for $.40 to low income families. When will school meals actually become healthy instead of a victim of special interest groups? When will one of the presidential candidates actually speak up about this issue? I am listening and waiting and I am angry at the hypocrisy.

Here's Monday's lunch menu:

All white meat Chicken Drummies w/Tots Corn Dog (full of fat and nitrates) (some form of deep fried processed meat is offered four days a week one day a week the nuggets are baked whee!)
Reduced fat Pizza (offered twice a week)
Mini Twin Cheeseburger (offered twice a week under a different name)
Turkey (nitrates) and Cheese (processed) on whole wheat (a sad rather soggy sandwich).
Salad mix (a sad affair of iceberg lettuce and a couple carrots - offered twice a week)
Carrot Sticks with ranch dressing
Corn (buttered and heavily salted)
Mixed fruit (a fruit salad drenched in corn syrup - some form of fruit in corn syrup is offered every day)
Offered every day

1% Low Fat
Non Fat Chocolate

Now it's not that I expect the government to understand or value organic produce but to me "Off to a Great Start" implies more than just offering 3 types of fruit every day. What about some pasta? I have yet to meet a child who doesn't love mac and cheese. What about bagels?(Oh but they offer that twice a week at breakfast) along with Cinnamon roll Pancake on a stick and other ways to give your kid a great sugar high for the rest of their day.

Today we had a somewhat disturbing conversation to me. "Is it true that you need to drink three cups of milk a day?" she asked. I blinked a bit. "There's a cow in the cafeteria... A picture of a cow." she added hastily as she interpreted my gimlet gaze as perhaps thinking there was a real cow in the cafeteria. Instead of I confess I was thinking hormones from nonorganic milk. I take a deep breath. Well maybe a little hormones aren't so bad. Then she continues "I love chocolate milk. I dream of chocolate milk in class. I dream everybody except the people are made of chocolate milk."

Sending my oldest child my daughter off to kindergarten brings with it a whole host of worries. Will she enjoy kindergarten and learn? Will she make friends? Will her teacher like her? But all my typical fears have been addressed. She comes home each day excited and happy. But I did not expect to worry about her health.

I have solved this problem by telling her the school cafeteria is completely out of the control of the school. True. That she goes to a wonderful school. But the school lunches are terrible. And the school has no choice in the matter. It works for a five year old. But I think about other parents who go to the school. The one who qualify for the $.40 cent reduced price lunch -- a really low income level. Or even those who are at a slightly higher income level for whom spending $3 for lunch versus spending the money to get a proper lunch is an issue. I think it's fundamentally unfair. I also get angry with people who argue that kids will only eat fat and sugar. Sure that's what they'll eat if that's the only thing on offer.

Friend's blog banned from hospital

Chicago Moms Blogger Mary Anne's blog from my son's hospital. Her blog now contains cute baby pictures,but yes she does write porn.

I'm amused by the idea of a hospital blocking cute baby photos and a bit sad since they do brighten my day.

I understand that the hospital doesn't want people even parents viewing photos of porn in what is essentially a public place.  Even in my son's room people walk in and out all the time.  I do agree that seeing a porn image without one's consent is sexual harassment and doesn't belong in a hospital,  especially a children's hospital.  But I read her mommy blog posts only. And I can read this blog and any other Mommy blog to my heart's content and some even talk about *gasp* sex. Ironically Mary Anne recently wrote a post Things I'm Scared to Blog About.

Don't worry Mary Anne. They're much more scared of you. I wish there was a better filtering system. What people *read* on their own PC or laptop is their own business and reading is something one has to make an effort to do while an image is something one can see inadvertently. I'm not sure what the answer is.

Do you think I should be able to read Mary Anne's blog from my son's hospital?

Sunday, September 16, 2007

If wishes were dogs

"If wishes were horses beggars would ride" is an old old saying.

Today I can't help wishing that wishes were dogs. On Tuesday my son will go to the hospital for 1-5 days for testing. A parent has to be there at all times. I can't help wishing my service dog could be there. My dog whom I don't have yet. A dog who could sit there and be a friend to us.

I include no photo since it doesn't matter what the dog looks like as long as the dog is patient and loving and can sit for a while.

But I'd also have to wish for proper training and the right dog for me and my family. A lot of wishes that I can't make true right now. It's just the way things work.

Instead I spend my wishes that my son's stay will be short and relatively sweet.

Thursday, September 13, 2007

Little T clocks another hospital stay

The want of this little thing caused Little T to clock another hospital stay - his shortest to date but it started at 7pm in the ER and ended around 5:30pm the next day.

His g-tube/feeding tube fell out and we didn't notice until the hole had already started to close up. We had a 2-hour window. Poor guy had to have a minor operation to redilate the hole and put another g-tube back in.

This happened within a day or replacing his g-tube which we're supposed to do every 3 months. We're not sure if the g-tube we replaced it with was defective or if our replacement technique didn't inflate the balloon all the way.

C was kinda sick before staying up most of the night and got to spend his birthday in the hospital. Now I'm sick. I actually ran a fever two nights running (unusual for me) and am now (hopefully) getting over it.

We're in the process of weaning Little T off the g-tube and his GI doctor kindly came by to talk to us about ditching it but Little T currently gets a third of calories through there and his GI doctor says that even after complete weaning he like to wait three months before removing the tube just in case.

Oh well.

Apparently a therapy dog came before I arrived and C said Little T was completely uninterested. I would have been interested but I'm also more interested in the dog's role. I think Little T would have appreciated my (future) service dog being there. However he's not that interested in random beings. He's had a lot of that in his life. Nurses and therapists and doctors during his several hospital stays. He's very friendly but beings have to develop a relationship with him. Even the most wonderful therapy dog couldn't do that in the 15 minutes they have to see him.

Sunday, September 09, 2007

Madeline L'Engle's time has passed and I regret I never wrote

With the death of Luciano Pavarotti and Madeline L'Engle two icons of my childhood have died one day apart. Madeline L'Engle was primarily famous for her children's books especially a Wrinkle In Time.

I read her books relatively late in my young reading life. I didn't move to the US until I was nine but I remember Meg well. A Wrinkle In Time was the first book I read about someone who was awkward and angry at a world who didn't accept her but lived in a quirky intellectual family that clearly loved her but didn't always understand her either. Like Meg's family my parents reacted with bafflement that the world didn't appreciate my wit and intellect and in fact teased and derided the very things my parents valued the most about me.

In many English children's books that I read such as The Lion The Witch and the Wardrobe or even Harry Potter the parents are absent and I could not relate at all to Judy's Blume. But Meg's parents were so present and yet so helpless to help Meg with her difficulties in school. If my life was a novel or movie the book would have launched a grand scene of understanding between me and my parents. Instead it began a long journey in which like Meg I slowly realized that my parents were flawed people who would need work and understanding to get to a place where they had some idea of who I was.

In college I and some friends actually drove from Philadelphia to Maine to hear L'Engle talk. The two things I remember were how bright the fall leaves were compared to the more drab colors in Philly. And the revelation that L'Engle was also a staunch Christian and writer of adult books. She talked about how God was everywhere. I went outside in nature and I saw deity that day. And began a different journey.

I have few regrets in life but I think one of them is that I never wrote to her and told her the two ways she impacted my life. I don't think much would have come of it but I do believe now in telling people my important truths. I always meant to but I thought I had more time. In college I had classified her as "old" but I didn't realize she was in fact truly old and that she might die if I waited twenty years.

I have not launched a grand campaign to write to my childhood icons but I am more aware now that they could pass away. I'm still working on the more immediate problem of arranging my son's special education but if my blogging causes a small ripple in the universe than I do ask the universe to please let them live just a little longer at least until October when I can think about writing to people about matters other than my immediate family.

Thursday, September 06, 2007

Dorma Pavarotti

Luciano Pavarotti's magnificient voice sleeps forever today. Pavarotti's most famous signature song "Nessun Dorma"(Let no one sleep) was from my favorite opera Turandot. I am sad I will never hear him sing live ever again.

Wednesday, September 05, 2007

Kindergarten is great but I want to go back to being a baby and grow up again

Special K is not just attending Kindergarten now but a real person to her teacher among her class of 20. No mean feat in a little under a week but I was not the one who named her Special K. She is the proud recipient of two gold stars and a "Your daughter can read." Why yes she can.

Little T goes everyday and sits and reads with her so in his mind he's going to Kindergarten too.

For the first week she sat and read at the YMCA afterschool program. I was a little concerned she might simply choose to read the entire time. A sign I think of how I had lost my moorings that I worried my daughter had lost her essentially social nature. I think she just choose to adjust to "Spanish Kindergarten" (PC name Dual Immersion) first and then when she was settled in her class then deal with the Y. That is so like her. The other day she put away her book and plunged into all the Y games and activities.

Already at five my daughter sees growing up is a mixed bag. That she has said goodbye to her beloved preschool and she can never go back. She tells me "I want to go back to being a baby and then back to preschool and then again to Kindergarten and round again." I did not really learn this lesson until Special K was half done being a baby and I realised the time had gone by so quickly and in my rush to get out of the sheer drudgery of her day-to-day care I had not appreciated enough her basic good health and just babyness. I did appreciate her as a person and I did relax during breastfeeding.

Oh baby if you only knew if how much I wish I could go back to the good times of your babyhood. Instead I try to appreciate you now. I watched you running so fast in the playground yesterday laughing and hair flying. I hope all your days are as carefree.