Wednesday, September 29, 2010

Poison Control

I've taken the food-handlers test. Twice. And passed it both times. But for some reason I am unable to safely prepare food for my family. I could blame it on baby brain, or on lack of sleep, but really it was pure negligence. I poisoned myself. And Brian.

Monday was such a good day! I made myself this "family notebook" to organize myself and keep track of doing chores and menus and things. I was so excited about it. And Sadie's been so good too, that I'm finally finding time (and energy) to clean things that I haven't cleaned for months (like the floors. side note: I was going to mop today until I realized the mop is outside still from the last time we mopped, and it hasn't been washed, and it's full of cob webs and growing mold. I'm such a bad housekeeper!). We went to therapy Monday morning and there was NO CAR SCREAMING both ways. Man, it was a good day!!

The night before I had taken some chicken out of the freezer to thaw for dinner, but the problem was that I forgot to actually PUT it in the refrigerator. It only made it so far as the counter. And there it sat all night. You see where this is going?

Immediately after dinner I felt sick. And I just thought it was because what I made was greasier than we normally eat (ew. just thinking about it is making me nauseated all over again), but then it never went away. And I fell asleep with Sadie on the couch and dragged her and myself to bed around 9:00. That's when it started. I can't really say I puked all night, because this was really the only time I had anything to puke up. But with each time it just got more and more horrible.

Then about my third time getting up at night, Brian got up too. It had to be the chicken.

The next day I could barely drag myself out of bed, but my body ached so badly that I couldn't lay there any longer either. I tried to shower and take Sadie to therapy, but I ended up taking my shower sitting down because I was too weak to stand up. I had to cancel everything. And I felt like such a bad mother because Sadie just laid on the floor all day. It was all I could do to change her diaper (which didn't happen often enough, I'll admit), and feed her (which I am amazed that my body could handle). We slept on and off all day long, me, Brian, and Sadie.

It was horrible.

I can't wait to tell you more about Sadie's new therapy though! She is doing so well! She's sleeping (independently), opening and using her hands, she's loose in the hips and shoulders, she doesn't cry all day long, and she smiles a lot more!! Stay tuned for pictures too!!

Wednesday, September 22, 2010


Most kids have a nickname given to them by their parents. Some call their little men "Bubba." Some call their daughters "Baby Girl." I had a friend in middle school whose parents called her "Woo." She hated it. My mom calls me "Honey Bun" and my brother is "Sugar Bear"...and these are interchangeable as needed.

We think Sadie needs a nickname and we need your help deciding what to call her when Sadie or Sades just isn't enough.

Names we've experimented with:
Little Sucker

Her grammy calls her Poppet (this sorta reminds me though of that creepy pirate in Pirates of the Carribean, the first one, at the beginning when they kidnap the girl)

I like Little Britches

Her grandpa calls her Kickstart (because she's always kicking just one leg! ha!)

Tuesday, September 21, 2010

Crunchy Mama?

I found this definition of a Crunchy Mama: Mother who supports homebirth, breastfeeding, baby wearing, cloth diapering, co-sleeping, gentle discipline, etc. One who questions established medical authority; tends to be vegetarian and/or prepare all-organic foods. I guess that's me! ...except we're not really vegetarian or all organic, but we're working on it!

Check out this other crunchy mama

For Tory: breadmaking

I used to always make bread in the bread machine. It's easy and you can be pretty creative by adding flax and cracked wheat and things. But I never was really happy with the shape of a bread machine loaf. They're tall and boxy, which makes for some REALLY big sandwiches. Plus, we're not very good at cutting nice THIN bread slices, so a bread machine loaf was good for 6 or 8 pieces. Then we got the grain mill and started making our own wheat flour. It seemed that it wasn't going to work in the bread machine, the first 4 loaves we made were bricks. What were we doing wrong? So, I started experimenting, looking for answers on the internet, and trying different things. Here is what I've come up with that seems to work pretty well.

Mind you, I've adapted this to work for ME and my equipment. I grind my own wheat, and I use the bread machine to knead (because kneading SUUUUUUCKS), but it's possible to do it without these things, you might just have to experiment a little.

Here's my recipe. And I kind of took a little from here and a little from there, and added and took away as I went and made sure to write it down. Bread is pretty easy though, flour, water, sugar and salt, and yeast are all you really need. This recipe uses honey (which I actually prefer when it comes to flavor) and a little oil.

3 cups of lukewarm water
7 cups of whole wheat flour
1 Tbs yeast
1 Tbs salt
1/3 cup Olive Oil
1/3 cup honey
3 Tbs vital wheat gluten

The first thing you want to do is mix everything together. Start with the dry ingredients, then add the honey and olive oil.
Finally add the water. It's important that the water not be too hot or too cold. It's important that it be about 100 degrees to activate the yeast and not kill it. (100 degrees is about the temp of a hot tub) I'm sort of crazy about this.

Then stir it all up until you get a dough ball.

Knead this dough ball for 8-10 minutes. If you don't have a bread machine to put it in, it's important that you knead correctly. (there is a right way and a wrong way to knead bread and it's important to do it the right way or the gluten won't work with the yeast to make the bread rise...who knew, right?) Here's a video explaining how to knead by hand.

Once you've kneaded it, let it rise for about an hour. Again, there's a right way and a wrong way to do this. Since it's still pretty warm outside, I just cover my bowl and set it in the shade outside for an hour. You can also turn your oven on really low and leave the door open a little and set it in there. If your house isn't too cool, you can just set it out on the counter, but the cooler the environment the longer it'll take to rise, so this might take longer than an hour. The way to tell if it's done rising is that it should be double it's original size.

Once your dough is done rising, re-knead it and let it rise for another hour.

Once your dough has risen a second time it's time to shape the loaves. There is also an art to doing this, you don't just lump them into the bread pan. Flatten out your dough so that it's a rectangle, the short side should be the same length as your bread pan. Then roll it up and place it in the bread pan (make sure your pan is well greased) with the tail of the roll on the bottom. It also helps this process if you put a little olive oil on the counter first. I use a glass cutting board.

Now let it rise one. more. time. I know, it takes forever, that's why you want to make multiple loaves at a time. When your dough has doubled in size, it's ready to put in the oven. Bake for 30-35 minutes, until the internal temperature is 180-200

I just use a cheap-o thermometer from the grocery store. But checking the temp is really the best way I've found to make sure your bread is done perfectly.

You'll want to immediately remove it from the baking pans so it doesn't get soggy, and let it sit on a cooling rack with a towel over it until it's cool. I usually let it sit out overnight, then in the morning I freeze one loaf and slice the other one. yum yum yum!!

Monday, September 20, 2010

I hate the grocery store

The grocery store used to be sort of fun. Aisles and aisles of food possibilities. How could that NOT be fun?

Then I got pregnant. And everything made me nauseous.

And then my baby was born sick. And life changed. And so did the grocery store.

I used to try to take Sadie with me to the grocery store, but the car screaming was too much to deal with, and then she wouldn't calm herself down when we got there. And she hates being in the ergo carrier. So, now grocery shopping is part of Sadie's weekend time with daddy, while mommy leaves by herself.

Now, when I go to the grocery store all I see are children. Everywhere I look are healthy, happy children. And families who have no idea how lucky they are to have those healthy, happy children. They grab things off the shelves, they ride in carts, they throw fits, they chase their siblings around the produce section. All while I try to hold my tears back.

Lately, I've also seen many pregnant women. Women who, like me, have no thought of bearing a disabled or sick child. Women who expect everything will go millions and millions of births every year.

It's hard for me to not cry. I can't help but still live in the world of what if. I look at those little babies and toddlers and think about how life SHOULD be for us. It still makes me sad.

And when these parents yell at their children for misbehaving, I smile. Because they have no idea how lucky they are that their children are ABLE to misbehave.

I wonder how many of the people who come to the grocery store are like me, they've left their special needs child at home because it's just too hard to bring him/her out in public. I think if I ever run into a parent at the grocery store with a special needs child in tow I might just run up and hug them!

And as I leave the grocery store, checking my receipt for my savings, I breathe a sigh of relief out in the parking lot. I'm thankful that it's over and I can go home to my reality. To my screaming child who needs me. And I don't have to wonder (as much) about what life would be like if Sadie were "normal."

Sunday, September 19, 2010

Banana confidence

Our most recent trip to Oregon, the hippy-est place on earth, we went to a library story/sing/social time. A group of parents with children all of a certain age would take off their shoes, unpack their children from their various style of harnesses (not strollers save one bad hippy-mommy) and sit in a circle. Shortly little kids were up and introducing themselves to other kids and parents and bystanders. I thought this fascinating as these kids and their joyous wanderings caused parents to interact with one another in a communal setting allowing introductions to be made, and friendships kindled. It was different from the way adults normally act.

Once the starting time commenced, the parents returned their kids to the place in the circle and they sat excitedly. The group, led by a librarian (coolest job ever!) sat and sang silly songs together complete with actions. Singing aloud a nutty children song, to yourself, your child and for the group to hear, all while participating in silly action shenanigans takes a lot confidence.

Christie was so impressed with this that she attended a similar library time in Phoenix. This group, apparently, was lame and uninteresting. They weren't willing to sing aloud, weren't willing to let their kids wander and explore, and weren't willing to interact with others who had a similar circumstance: their aged children.

This Friday I attended a similar event at the Foundation for Blind Children. The parents sang aloud. The parents whooshed and giggled and bounced their kids. The children, in various states, loved it. I don't believe there was a child there who did not enjoy the time together with their parents (and grandparents and some other people of some sort of relation) as they sang, danced and enjoyed the time together.

The art, or perhaps better summarized: the bumbling effort - of raising children is best served with confidence. Might we consider that having a child and being forced to deal with that child in all his or her humanness, fallibility, finiteness and love causes a parent to understand their true role.

Saturday, September 18, 2010

ABM: a renewed hope

ABM is a new therapy we heard about from a lady at the Foundation for Blind Children (actually the mom of the little girl I wrote about yesterday). It stands for Anat Baniel Method (that is a picture of Anat Baniel to the left). I'm gonna post a bunch of videos, and I'm just warning you 1. they're long, and 2. you might need tissue (for happy tears of joy).

ABM is not just for special needs children, anybody can experience results through this kind of movement therapy. However, for our purposes we will focus on using it to help children...especially children with CP. ABM is based on the idea that simple pressure on the spine stimulates the nervous system allowing the brain to create new neural pathways. By increasing the child's awareness of his/her body, the idea is that the child becomes more mobile. It can also improve vision (if it's brain-related like Sadie's) and speech. Results from this approach to movement in children with delays/disabilities is dramatic and almost immediate.

ABM is learning-based, not medical-based, and because of what we know about the brain's plasticity and ability to recover and heal, the earlier one can start ABM, the better chance for full recovery of ability and normal development. This means that if we start Sadie now, she could very possibly be walking ON TIME. The reason I can say this with some confidence is that I've watched SO MANY of these videos and they are amazing.

But before you watch the videos, I want to share with you what Anat Baniel calls the 9 essentials that the brain requires in order to grow and develop new patterns and possibilities.

1. Movement with Attention: without movement we cannot feel alive, and movement with attention allows the brain to create new patterns so that a child can learn. Paying attention to your movements is powerful, even for adults. Think about if you've ever done yoga or Tai Chi, you are moving your body slowly and deliberately and it not only benfits you physically, but it's good for your brain.

2. Learning Switch: You want your learning switch to be on so that everything that you experience can be a learning experience for your brain to use and to help it grow. Turning on your learning switch allows you to become a real-life problem solver. In order to turn on this learning switch, it's important to step into each situation consciously expecting to learn something new.

3. Subtlety: Our job as we go through life is to become more and more refined and to be able to be more subtle with our movement and our skills. Creating more subtle pathways and connections in the brain allows us to be more complex with our skills. We want to help our brains grow subtlely and not with force so that we can get the most bang for our buck, so to speak.

4. Variation: Changing things just a little or finding new ways to do something causes the brain to flourish and spring to life. Make intentional mistakes when practicing, then go back and redo whatever it is correctly and you may find that your brain has really expanded and improved.

5. Slow: Slowing down helps us to feel and sense more of what's going on around us. This makes our lives richer. Doing everything on "auto-pilot" can cause us to forget that life is to be enjoyed, but slowing down and tuning into all our senses enriches our lives and allows us to really feel alive.

6. Enthusiasm: Enthusiasm is a skill, something you can learn to do intentionally, instead of it just being a reaction to an outside stimulus. Anything you bring enthusiasm to will grow and expand and improve. When you are enthusiastic about something someone has done, you may find that they will do it more. When you are internally enthusiastic you effect the environment around you, creating more energy and a more positive environment to be in. Make the small into great by being enthusiastic.

7. Flexible Goals: When you are flexible about your goals, you are able to be flexible about the opportunities you have to reach those goals. Being rigid about your goal and how to reach it actually lessens your chances of ever achieving it. The moment we make a new goal, we don't know how we're going to get there or if we ever will, we aren't even sure what it will look like when/if we do reach our goal. Heading roughly toward something at first, then narrowing your focus toward your goal the closer you get to it will help you be more successful.

8. Imagination and Dreams: Imagination is just as good as the real thing. Using your brain to imagine yourself doing something actually creates new patterns rather than just doing the same thing over and over and traveling along the same lines that were already there. Dreams are big ideas we form from within about our future or the future of our children. Dreams give us a direction for our lives.

9. Awareness: For humans to grow and thrive it's important for us to be aware and to continually be challenging ourselves to do things at higher and higher levels. Becoming more and more aware of ourselves and our environment is something we can develop regardless of our age or stature. Without awareness there can be no knowledge. Becoming aware makes one accurate, deliberate, and wise about other people and about oneself.

Now, check these out

Anat Baniel's video showing several children with CP (it's in 2 parts)
Part 1
Part 2

Isaac, who had meningitis as a baby and it caused hydrocephalus (water in the brain)
Isaac's video

Here's a 6 month old with some paralysis of the left side of her body
Hannah's video

This is Michelle, she is here in Phoenix (so cool that she has amazing videos on here!)
Anthony's video

Rolling over with Liam
Liam's video

This one might make you cry, I've watched it 3 times and cried everytime!
Cole's video

This is Aliyah, the little girl I told you about yesterday who fell in love with Brian
Aliyah's video

If you actually took the time and watched ALL these videos, you might also be convinced. Needless to say, I'm calling Monday.

Friday, September 17, 2010

The sweetest thing I've ever witnessed

For any of you who know my husband personally, you know he's a likable guy. If you've ever let him play with your children, you know that they were probably asking when they could play with him again. Children LOVE Brian. But today I saw the sweetest thing I've ever seen.

Brian took the day off and joined me at the Foundation for Blind Children Infant Program this morning. He met a lady I've only sort of met, but who I know of through Sadie's OT. Her daughter has microcephaly, and we learned this morning she had been born at 24 weeks! (miracle baby) While we were talking to her, Brian asked if he could hold Aliyah. Even special needs kids like Brian. Immediately her face lit up in a big grin. And while I was still talking to her mom, I kept one eye on Brian and Aliyah. He was telling her how pretty she is and how special she is and then HE. KISSED. HER!!!

My husband, who never even held a baby until we had one of our own, is the sweetest man alive!

This totally made my day.

Saturday, September 11, 2010

Dry Apples: A photo essay

I dedicate this photo essay to Victor, who always encourages me to be adventurous in the kitchen, and to take pictures of it all!

My big box of apples, each layer has 20 apples, there are probably 5 or 6 do the math!
Washed and ready to go!

The first 3 trays are just plain apples.
The next 2 have cinnamon sprinkled on them.
The 2 after that are coated/dipped in honey-sugar water!
And the last two trays are plain again.

All loaded and ready to go. Now we just have to sit and 12 hours!

Learning to Eat

I think the hardest thing about teaching Sadie how to eat is that all the books are written for normal babies; babies who reach and grab and put things in their mouths (although Sadie is getting better at using her hands). So, everything I read I have to take with a grain of salt. I would love to do the baby-led weaning method that La Leche League boasts as the best way to teach a baby to eat. This method includes giving baby finger foods from your regular meals, no purees, no special baby foods. Sounds easy. Sounds fun. Sounds unrealistic.

For now, we'll do it the traditional way. Well, sort of.

Sadie had her first solid food, butternut squash, on August first. She was 6.5 months old, we had gotten clearance from the pediatrician, and we already had some pureed squash in the freezer. So we went for it. And it didn't go badly...until we were trying to coax it out the other end. It took 4 days!! But I was excited, so we tried bananas, this time it took 5 days!! At that point I decided we needed to wait another month, let her digestive system mature a little more.

On Labor Day we had bananas again, and we've been going strong ever since. Sadie's even eaten 2 meals in one day. And it is coming out the other end just fine. Good decision, mama.

But I still wish there was a book for teaching your special baby to eat. The problem is, it's such a wide audience. Even if we narrowed it down to teaching your CP baby to eat, it'd be too hard. So many forms of CP effect the facial muscles and actually impair eating and speaking. It's actually a HUUUUUGE milestone that Sadie is doing so well with it. This means she likely will be able to speak and not have future eating problems. So, for now we just read all the normal baby food books and websites and we adapt it to fit our needs.

And I guess that's what all parents do whether they have a special needs child or not.

Friday, September 10, 2010

I can only imagine...

Heaven is on my heart today. We attended the first "infant program" at Foundation for Blind Children today. And as I looked around and participated in singing and playing and rejoicing with other moms, I couldn't help wishing none of us had to be there. But at the same time, I felt so grateful and so thankful that we all WERE there...such conflicting emotions.

This program consists of some activities, some music therapy, then a break while parents get to have a meeting BY THEMSELVES. Since today was the first day of the new "school year" we just went around and did introductions. I cried. I was crying before it was my turn. In fact, I cried on the way there in the car...and all the way home. Some days are harder than others, and today was a hard one. But I wasn't the only one who cried, and I felt like I was in good company. I was surrounded by other parents who deal with the same things and struggle with the same emotions.

As we got in the car to leave, I turned on the radio (to drown out the screaming) and the song "I can only imagine" was playing (by Mercy Me). That's when I lost it. The song is all about how he misses his father who passed away and he can't wait to get to heaven to see him again. Totally sad to begin with. But then I started really thinking about Heaven and what it is. I started imagining what it'll be like to see my baby made whole, in body and brain. What an amazing thing to hope for.

Don't get me wrong, I love Sadie the way she is, but there's nothing I want more for her than to be healed, to be whole, to be out of pain and suffering. And not just for her, but for me. When I thought about getting pregnant and having children, having a child like Sadie was my biggest fear. The idea of working so hard for development, of changing my life so drastically, of NEVER having an empty nest, was the scariest thing I could imagine. And here I am, living it. And yet I know this is NOT how God intended it to be, this is a consequence of living in a fallen world full of sin. This is nobody's fault. So, when I think about how it SHOULD be, I can't help but think about Heaven. A place where I will get to dance and sing and laugh with my complete and whole child who has no disabilities.

Right now she's looking at me with this goofy, happy look on her face while tears run from my eyes and I can just imagine her saying, "why are you so sad mama? I'm here and I'm alright, you should be happy!" You know how people say that when they have children it's amazing to realize how much they could actually love another person. For me, I look at my baby and I am amazed at how much she loves me. I am the best person she knows (besides Daddy, of course), and she loves me unconditionally. Even when I wish she was whole, even when I cry over what she SHOULD have been, even when I think about Heaven. She loves me so much that no matter where I am in the room, when she hears my voice she turns to find me. She loves me so much that she sleeps better up against my body. She loves me so much that she knows how to nurse and she falls asleep in my arms, and she's comforted by me best.

I have no idea what Sadie will be. I don't know what she'll be able to do and not do. I don't know if she'll ever read a book or ride a bike or play on the monkey bars. But I do know she'll be loved, and know that someday when she gets to Heaven she'll be able to do anything she wants!! For now, I can only imagine.

Wednesday, September 8, 2010

Little Miss Skinny-Minnie

My mom loves having granddaughters. She is also a talented seamstress and she wants to make her granddaughters matching dresses for Christmas. So sweet. But she told me she wants to do a "trial run" to make sure her pattern she has measures out right. Since she'll be here in November to visit, she thought that'd be a good time to bring Sadie a dress. So, she asked me to send her Sadie's measurements. Her chest, her waist, and her length (head to toe). When I gave them to her we agreed my baby is long and skinny. I said to my mom, "you'll have to make it a little bigger cause she'll grow between now and then." She told me, "yeah, that's okay because I don't have a pattern that small!" So, how'd she end up so skinny? I wasn't a skinny baby...but I've provided you with some pictures of Brian as a little kid and maybe you'll see that Sadie TOTALLY has her daddy's genes.

PS. I left Mindy in this one because she's just SSSOOOO CUUUUTE!

Monday, September 6, 2010

A Good Day

Today was a good day. For starters I got to sleep almost 6 hours BY. MYSELF. without a warm, wiggly baby cuddled up against me preventing me from moving and getting comfortable. Unfortunately, at 2:30 she DID come sleep with me, and then woke up at 5:30. But I felt okay enough to get up around 6...which is the first time in the last 3 days that I actually felt rested!

Sadie was in such a good mood this morning when she woke up (as she usually is), so I decided it's time to do this solid food thing. For real. I put Sadie in her high chair, nuked some heart shaped frozen banana cubes (with a little breastmilk mixed in, of course) and then sat down and ate my own bowl of cereal. I have this crazy idea that if Sadie sees me/us eating at the table, she'll learn that that's what we want her to do also. Pay no mind that we're still not sure what she can actually see. But she watched me eat, then she ate the ENTIRE serving of bananas I made her. So maybe it works.

When we tried solid foods a month ago I had to practically WIPE the spoon off in Sadie's mouth, then most of it would come out via tongue-thrusting, and I'd scoop it up and reapply. And she did okay like this until one day she just stopped trying altogether. This morning, however, she was able to close her mouth around the spoon and actually suck the bananas off and swallow them...with minimal mess. I was amazed how far she's come in just 1 month, and we haven't even been practicing.

Another reason we sort of took a break from solids was the constipation. When we first gave her squash it took 4 days before we saw poop. And she was a VERY unhappy baby up until that wonderful day we finally smelled it. It took the bananas 5 days! This morning I gave her a lot of water after she finished her bananas in hopes that it'll speed up the process and make it less painful...for everyone.

I also did some wheat grinding today. I ground (by hand) more wheat than I ever have in one "sitting"...5 cups!! It was 30 minutes of sweaty, muscle-burning, mouth-breathing grinding. But it was SSSOOOOOO worth it when that bread came out of the oven that I made! Also along the lines of bread, I learned how to manipulate the bread machine into kneading my dough for me, but I did everything else by hand. I'm thinking I like making bread better this way and now I want a Kitchen Aid stand mixer. Brian thinks I'm crazy because I've already asked for a food dehydrator. But both my birthday AND Christmas are coming up!

Brian fixed my car this morning. Ever since we returned from California it's been rattling. We accidentally hit some debris on the freeway somewhere near Riverside and I think that's what caused it. But he fixed it, and now it doesn't rattle. So instead of a super ghetto rattly car, only the brakes squeak now, so it's just a little bit ghetto. Also in car news, I asked Brian if we get a bunch of money from winning our lawsuit against the pharmacy if we could buy a van. He wasn't opposed to it, which is HUGE! PS. we're calling a lawyer in the morning.

Later in the afternoon Grandpa came over (Sadie's grandpa, not mine) and took Sadie in the swimming pool. This is what he does when he comes over: He holds Sadie while running all over the pool killing the wasps that land there. He lines up the dead wasps in a row on the pool deck and then counts them up and brags about how many "kills" he has. It's fun for them. They bond over death, I guess.

We got to go to the nursery and buy seeds while they were in the pool. In Arizona you have a summer growing season and a winter season (since the winters here are AWESOME) and it's just about time to plant for winter. We decided to go the seed route this time to expand our options a little from just the starters they sell at The Home Depot. We got carrots, that are different colors. We also got broccoli, lettuce, leeks, peas, and spinach. We can't wait to start our little seedlings and watch them grow.

Speaking of watching things grow, this summer we tried growing eggplant. As of now it's the only thing left alive in the garden. Brian picked about 34 eggplants this morning!! Mind you, I'm not that crazy about eggplant, and beyond eggplant parmesan and ratatouille, there's not much else you can do with them. Anybody want some eggplant? No seriously.

Brian made something called Pasta Alla Norma for dinner. It was like spaghetti with eggplant marinara and it was pretty good! My dad stayed for dinner and between the 3 of us we polished off a whole loaf of my yummy fresh bread from earlier with our eggplant pasta.

Finally, I conquered my diaper stink problem. Since we have SUPER hard water, it creates a build-up on Sadie's cloth diapers and they were REALLY starting to stink! Even fresh pee wreaked of ammonia. Now those of you who use disposables might be used to stinky dipes (we constantly think Sadie's poopy when she's in a disposable) but we're not, and we don't like it. I also think my recent detergent switch may have caused some build-up leading to the great stink. So I did some research online about it (which consisted of checking cloth diapering forums and asking my facebook friends) and then I washed the dipes like normal last night. This morning I washed them again with a little vinegar and no soap, then I hung them out to dry for most of the day. Voila! NO. MO'. STINK!

Today was probably the best Labor Day I've ever had, and that's good because Sadie and I have a couple of really busy weeks. This week we have 2 doctor appointments, 5 therapies (one of which is something new we're trying, music therapy with a harpist!) and a birthday party. Next week we have 2 doctor appointments 4 therapies, 2 La Leche League meetings, and a visit from a social worker! Hopefully the week after that we'll have less car riding! Someday Sadie WILL be able to ride in the car without glass-shattering screaming. And in case you're wondering...I'm still running!!!

Sunday, September 5, 2010

Peeling a Banana

One can see that our banana plant has enjoyed the new growth through the hot summer, but along with new growth has come some scorched leaves. This probably lends easily to some metaphor for Sadie, but I figure that's somewhat trite and know that we can do better.

I had a pretty awful experience at work with a customer who went out of her way to make my life miserable and I considered writing how a new child makes parents wish to eradicate all of the evil in the world, and running into an abomination of humanity tests every fiber in my body to take the high road and be a model for my daughter.

Instead, what I want to write about is an outstanding conversation I had with a co-worker upon his dropping me off at the air pot. I had a business trip to Las Vegas from Wednesday to Friday. The weekend following was labor day weekend. I had spent the trip avoiding the sensory overload of Las Vegas and did not put a dime in any casino or partake in any debauchery that the city seems to offer all of its guests. As my co-worker dropped me off at the airport, he said: count the working girls coming off of the plane.

So, while sitting in my gate I strategically picked a seat facing the exit tunnel of a plane and counted the girls who exited the plane alone, endowed in a manner that God did not intend, with a fierce look upon their face.


Heretofore I was unaware how important these may be for fathers.

Saturday, September 4, 2010

hips and Bones

We saw the hip doctor on Wednesday...I know, I know, it's Saturday and I'm just now getting to telling you about this!! You see, there's this show on TV called Bones, and since we don't have TV, I get sucked into shows with multiple seasons on netflix instant streaming. I've watched 4 seasons of Bones and I can't stop. Usually I am okay with just moving on to another show even though there are more seasons I can't get right now, but this one is different somehow. There's an underlying love story between 2 friends who are partners in fighting crime, there is the beautiful slutty girl who experiments with bisexuality and whom everyone seems to fall in love with despite the fact that she's pretty slutty, and then there's the fact that the show is filled with nerdy scientists who solve murders!! Yeah, pretty great huh? It's like Law and Order meets Big Bang Theory...or something. Anyway, I found pirated episodes online and I am plowing through them with reckless abandonment, I'm addicted. ANd because that's ALL I do when I'm sitting here holding Sadie nurse-napping, I've neglected to write on my blog.

Please accept my apologies.

Okay, now that I've gotten that off my chest...we saw the hip doctor this week. In case you don't remember there were x-rays taken of Sadie's hip while we were staying at the hospital for Sadie's long-term EEG. There was some concern as kids with CP and high muscle tone (tightness in the muscles), tend to have problems with hip development due to straightening and pulling in of the legs. Sadie was also given a new medicine during this hospital visit to help relax her muscle tone and give her more control over herself. This new medicine has actually done wonders for Sadie and we really see a difference. But her left hip is somewhat of a concern.

We revisited the doctor who requested the x-rays and he mentioned that he'd like to inject Sadie's inner hip tendon with a medicine called phenol. (the link I gave you is wikipedia, the ENTIRE thing is about the chemical makeup of phenol, but at the bottom under "niche uses" it mentions the use for paralyzing nerves...scary) This would disrupt communication between that tendon and her nervous system and cause her leg to relax and hopefully allow that hip to move and develop correctly. This could last 4-6 months. (if you want to learn more about phenol, google "phenol used for cerebral palsy" and it'll give you more information)

I looked phenol up on the internet and found out that it's very common to use in people with CP, but it's pretty scary. It can cause side effects that an adult might be able to handle (like tingling and a cold sensation at the point of the injection), but to me sound like a recipe for a screaming baby. There is also the possibility that it could kill the tendon completely and we're not sure we're ready for that, she's still so young, and she might need that tendon for walking! We agreed to think about it and to see an orthopedic surgeon to see what he thinks. That's who we saw on Wednesday. His name is Dr. Karlen and he was very nice.

Dr. Karlen told me that, while Sadie's hip is somewhat of a concern, it's not something to get really worried about yet. We just need to keep an eye on it. Which means no drastic phenol. Yet. Dr. Karlen let me take pictures of the x-rays with my phone so I could share them with you, so I have attached them below so you can see for yourself. He says her sockets and bones themselves look good, we just want to make sure the ball of the socket digs real well into itself so that she doesn't experience popping out of joints or wearing out of cartilage. He would like to see her every 6 months or so and do more x-rays to keep an eye on it. He seemed fairly positive that we probably wouldn't need treatment for years.

This is great news.

And now I have 4 more episodes of Bones before I am done with season 5. Sick huh, maybe I need to see a "Bones" doctor myself.

You'll notice that the left hip (marked with a big red L) is slightly higher and sits a little less imbedded into the socket. Compare with the right hip, which looks okay.
This x-ray was taken with her legs froggied outward, you can see how the right hip is at a good angle for the ball to form its socket. However, the left is lacking in range of motion and is at a slightly different angle. We're working on that.

PS. I raised $375 in my first day of fundraising!! ...but I haven't raised any since. I'm still looking for donations and no amount is too small. Please consider giving to the Phoenix Children's Hospital, the very place Sadie's life was saved. Click the link below to read more about it.