Friday, December 31, 2010

Our family...only, in the future

My sister in law came across this blog and sent it to me. It's like looking into the future of our lives. May is a little girl who has CP due to HIE at birth. She looks like Sadie, she loves to bounce, she has a small head, the similarities are endless. But May has seizures and that makes me sad for her.

Anyway, check out May, who is about 9 months older than Sadie. She's really doing great!

New Year's Resolution

I am looking forward to this coming year. It's amazing that it's almost Sadie's first birthday, and as she was born in January, I kind of feel like every New Year's Eve I will have a similar feeling for the rest of Sadie's life. It's kind of like look-how-far-we've-come-this-year as well as I-can't-wait-to-see-where-we'll-go-next-year. And it's exciting.

Maybe New Year's resolutions are stupid and pointless, and for some, pretty meaningless, but for our little family good intentions are the first step in the right direction. So, this year, my goal is to write more in this blog. I want to remember more, tell more, rejoice more, and cry less...and I want to do it all with my words.

Happy New Year Everyone!

Thursday, December 30, 2010

Poop: a new appreciation - I think.

We've had a new development as Sadie ages. She is nursing less and eating more solid food. She hasn't quite grasped the joy of the bottle so her fluid intake is dropping. We're having to suppleament with water we squirt down her throat from a medicine dropper. If we forget or she won't take it she doesn't get enough liquid.

Did you know that your colon regulates the amount of water your body holds? If you don't get enough your poop is the first to loose water - causing constipation. Sadie, who cannot walk around, has an extra bit of trouble as her bowls don't jiggle in her body like ours do. That poop just doesn't work itself out like it needs to.

Sadie was incredibly bottled up in Oregon. She'd nurse a bit, look stern in the face and work on the nugget in her colon. We would strip her clothes, rip off her diaper, pull back her legs and watch her prairie dog a turd, and watch it disappear back up inside of her.

This happened at least 3 times while I was present, and perhaps more when I was not. Eventually we called an ask-a-nurse who advised, "perhaps you should see a doctor?" Annoyed, we went to Wal Mart, at mid-night, waited for some amazing looking people to count out pennies for their sugar colas and candy bars so we could buy baby suppositories. We rushed home, undid poor Sadies clothes and armed Christie with a rubber glove. We opened the package of suppositories and took out what seemed a mideival lance, broke it in half and rammed it up her poor, clogged corn-hole.

She immediately pushed, not because of any other reason than it was time, and she poked a bit out. Christie, armed with a glove, broke off the piece that stuck out. Then she fished out a bit more. And it then blasted out, screams, whole amazing chunks of poop. And then another. We three, Christie, myself, and Merm-in-law, all in a triangle surrounding Sadie watched mouth agape. I, holding Sadie's legs back, thought it would have been an impressive load for an adult, let alone a 20 pound special needs baby.

Christie and I had a similar episode tonight, except we didn't have a rubber glove, and Christie's nails are pretty long, so we used a plastic bag. The kind you'd put apples in. I'm not sure we're into this kind of BM so we're going to increase water intake, see about a stool softener, and perhaps look into a wet/dry vacuum with a tiny hose attachment.

We didn't think a photo essay was appropriate.

I told my mom about this, and perhaps other parents know this too, but apparently this is a somewhat common happening among the memberhood of paternity. When I read the "becoming a parent" brochure at the baby shop it only had pictures of cute babies cooing and smiling. Apparently, we're now indoctrinated into an inner secret of poop-pullers as legions have come forward, proudly, telling of similar stories. I never thought, in my life, I'd eagerly stand over a girl waiting for her to poop, watching hopefully as one girl reaches inside the other and yanks out crap. It is a cruel world we live in and now, I cannot imagine there are worse things yet to happen. Are their circles that we've yet to endure as parents that are as awful as poop pulling?

Monday, December 27, 2010

Williams Family Reunion 2010

Almost a year ago, when I found out so many of my family would be in one place for Christmas, I decided we needed to have a family reunion. For so many years we've been scattered all over the country. Some of my cousins that I remember growing up with, I haven't seen in almost 10 years!! Some have gotten married, some have had babies, some babies have turned into teenagers, and the "big kids" have now graduated from High School and moved out!!! It wasn't that long ago when we were all sitting at the "kids's table" eating Thanksgiving dinner.


We met at a pizza parlour in Eugene and enjoyed pizza, white elephant gifts, and loud talking (a signature of the Williams family). Many got to meet Sadie for the first time...too bad she screamed all day. But we got some good pictures...and I got some good hugs.




Sadie and her second cousin, Roman (he was born 10 days after her)

the original grandchildren

Christie, Marcus, Luke, Beth, Noah, Brooke

The Williams Family (minus John and family)

Saturday, December 25, 2010

Sadie's First Christmas

Sadie and I went to Eugene way before Christmas, December 13th actually. The plan was to spend some time with friends and family, then Brian would join us Christmas Eve and we'd all have a wonderful, happy, Merry Christmas. Flying home on the 29th would then get us back in time for New Year's Eve. It sorta went like that.

This was Sadie's first Christmas, and she slept through most of it (not complaining!). She got some really great presents like a book all about colors, some PlayDough, and a pillow pet. But, mostly she liked the lights on the tree and the crinkly wrapping paper! ...babies are so easy to please!

This is our third year of my Christmas Eve tradition that I force everyone to participate in! The idea is that everyone gets to open one gift on Christmas Eve night...new jammies. THat way when they wake up in the morning, everyone will be in brand new cute jammies for pictures!! Here's Sadie's first Christmas Eve jammies.

Sadie's only cousin, Attilie got the same jammies for Christmas Eve, so on Christmas morning, they were matching...they were also both asleep for most of the present unwrapping!

(we were trying to get Attilie to hug Sadie)


Sadie really enjoyed looking at the Christmas tree. Actually, anywhere we went, she found the Christmas tree. She likes to stare at lights, and big, dark, ominous objects are also interesting. SO, what could be better than a big dark object covered in twinkly lights!


While my brother's family was staying in Eugene, his dog stayed at our house. Her name is Rosa, and I don't like dogs very much, but Rosa makes me sorta want a dog. She is so good, and she loves babies. Sadie also likes Rosa.
My mom gave both the girls matching Christmas dresses. The idea was to have portraits taken, but things got so busy that we could just never find time for that. So, instead we did this...













(See, Attilie does love her cousin!)


Overall, it was a great Christmas! We enjoyed spending time with family and eating lots of chocolate. But, we couldn't help wondering what next Christmas will be like. Will Sadie be sitting? Will she be walking? Will we be traveling with a walker instead of a stroller? Will she be able to open some of her own presents? Will we need a bouncy chair? Oh the possibilities this next year brings!


Merry Christmas Everyone!


Thursday, December 23, 2010

My first 10K

Once again, I'm behind...I ran a 10K on December 4th, almost 3 weeks ago. 10K is 6.2 miles and I had never run that far until that day. It was good for me, boosted my confidence.

It was a cold morning and I actually went in the bathroom and put my hands under the dryer to warm them up! And I did a lot of walking around, trying to stretch and stay warm. I was by myself, Brian promised that he and Sadie would meet me at the finish line. By the time the race started, it warmed up a little, but I still ran the whole way in pants and long sleeves.

The course was NOT flat, there were 2 hills and I had to run through gravel. One lady was running with a stoller and had to walk through the gravel. She and her husband ran with me a lot of the way, but they picked up the pace at the end and ended up way ahead of me. It was all I could do just to finish.

I wanted to stop so badly at the end, but in my head it was silly to quit when I could SEE the finish line! And as I was coming in, there were lots of people cheering me on, so that made me feel good. I think what helped the most though was that every K was marked, and it was an out and back course. So, I could keep track of how far I'd gone, and I could feel how close I was because I'd seen all this before.
Less than a month until I run the half marathon. I am nervous. I don't expect to run the whole thing, my goal is to run 10 miles before I have to walk. And I even kind of think that, depending on how I feel, if I can make it 10 miles, I can psyche myself into a couple more...maybe even 3 more! There's still plenty of time to donate, and in this season of giving, there's no better present you can give than hope to many children like Sadie at Phoenix Children's Hospital. Please consider giving something, no gift is too small.

I will try not to wait so long to tell you about my half marathon!!

video


Wednesday, December 22, 2010

Pierced Ears!


I think it actually started as soon as we found out we were pregnant, before we even knew for sure we were having a girl; the question of ear piercing (and makeup and barbies and dating...but we won't get into that here). Should we do it when she's a baby? Should we make it a special "big girl" treat when she's 4 or 5? Should we not do it at all and let her decide to do it when she's ready? There was so much to consider.
Then Sadie happened, and we stopped talking about it at all.

There is another little girl who we know from The Foundation for Blind Children who has her ears pierced. I talked her her mom about it and she said she cried a lot, but not for very long. She made a point to tell me that it was over quickly. When I asked her if it was a lot of work to keep them clean and everything, she said you just have to clean them while they're healing and then you can basically just leave them alone. And then I started thinking about it again.

Whenever I've talked to Brian about it, I got the impression that he didn't really have an opinion one way or another and that it was kind of up to me. After all, I'm the one hemming and hawing and making a big deal...he doesn't make a big deal of things like this. But I was still up in the air about it: Would she cry for days because she's so sensitive? Would having earrings in her ears bother her (and therefore cause more screaming than normal)? If I wait until she's 4 or 5 will it be worse or will she even know enough to understand a "big girl" treat? Should we even consider it at all knowing all we know about her?

Then I was at the mall yesterday with my mom and as we were leaving (because Sadie was overstimulated and couldn't calm down) we passed The Piercing Pagoda. And originally we stopped because I lost my nosering somewhere and I thought I could buy another one...but then the lady was so nice, and Sadie was already out of control tired and grumpy, so it's not like it'd be much worse, so we just did it.

It wasn't bad at all. She first did the owie cry where she doesn't make any noise at all. Then she gave a few loud screams, then we were done and I shoved the pacifier in her mouth and held her tight and she fell asleep. And that was it. Didn't hear another peep until I went to clean and twist them this morning.

And they look so pretty.


The before. Notice the naked ears.

This was just drawing the dots, she hadn't even broken out the gun yet.

The actual piercing went so fast, both ears were probably done in less than a minute.

All done, but still in shock and traumatized.

Getting over it pretty quickly.

Totally showing off her bling by the time mama signed the credit card slip!

Tuesday, December 21, 2010

Arizona Long Term Care System

Once Sadie qualified for AZ'a Early Intervention Program, which got her services like Physical Therapy, Occupational Therapy, and Speech, the next step was to apply for Long Term Care (ALTCS). It was explained to me that acceptance into ALTCS was based on need, it is a point system. Based on Sadie's diagnoses, and her ability to do certain age-appropriate things or not, she would earn a certain amount of points. She had to reach 40 points in order to receive ALTCS care. We first applied when Sadie was 4 months, however, the screening wasn't done until 6 months (yay for how fast the government works). Even though Sadie could not roll or sit and she was barely smiling she was denied. Unfortunately, there were not points given or questions asked about if she screams in the car everytime we go somewhere or if she sleeps through the night therefore letting me sleep through the night. I almost apealed the decision, but my advocate (also called a support coordinator) told me we can just reapply...as many times as we want until we get in. She also told me the next list of skills was for 9 months, so we should start the process when Sadie is 8 months so that we'll be considered for the next skills set. And the more Sadie CAN'T do, the more points she'll get. We did what we were told and called around 8 months to get the ball rolling again. At this point we were desperate.

I bet you're wondering why ALTCS is so important and why we want to get into that system so badly. There are a number of reasons, actually.


1. Right now we are eligible for services through the Division of Developmental Disabilities (DDD) Early Intervention Program (AZEIP), which covers birth to 3 years old. This program gets us therapies. However, after recent legislation was passed, a program called "Family Cost Participation" was instated. Where therapies used to be 100% covered by the state, now we are required to pay a percentage of them based on our income. Starting in November, we were told we were responsible for 35% of the cost of therapies. This is after insurance is billed. As you can imagine, having 3+ therapies a week, this can get pretty pricey. So, for the month of December I've lessened Sadie's therapies. This Family Cost Participation also applies to any equipment recommended or needed for therapies, which Sadie will eventually need. However, if you have ALTCS you are exempt, and the state completely picks up the tab.

2. Being enrolled in ALTCS includes state healthcare coverage. I have become very familiar with insurance billing in the last year as you can imagine, so this means that first our private insurance is billed, then the state provided health insurance pays the rest. This includes prescriptions, hospital services, triage, equipment, etc. As you can imagine, this is a HUGE financial burden lifted from families (like ours) who have a child who is going to need these kinds of services her entire life.

3. The state will provide and pay for 720 hours of respite a year. This is really the biggest reason we want ALTCS right now. This means that someone will come help me. As someone once told me, it's basically glorified babysitting. Right now Sadie is NOT able to really go out and run errands with me. Although the car screaming is getting better, taking her to the store, the post office, whatever, just isn't practical. A couple weeks ago, we put her in the stroller and took her to Costco. She loves her stroller, so we didn't think it'd be a problem. I think it was visually too stimulating, and maybe the way the noise bounced off the walls...she was overstimulated pretty quickly and couldn't handle it. It's probably a similar situation for any store she enters. Having someone come over and watch Sadie for a couple hours just so I can get some work done, would be so helpful. I have even heard stories of respite workers even coming and helping with chores; vacuuming or cooking or laundry, things like that. In my imagination a respite caregiver must come with wings and a halo, because she would seem heaven-sent.

Even though we began the application process when Sadie was 8 months old, we just had her interview a couple of weeks ago. I was told to "encourage" Sadie to have a bad day when the person comes over. Don't clean the house. Look as stressed out as possible. And DON'T make Sadie look like she's doing great (even though in my mind, as her mother, she is!). The goal is to give this person a picture of a family who NEEDS to be in ALTCS. Sadie wasn't great when the lady came over. She needed a nap, and I explained that I'd been waiting for the lady to get there (she was a half hour late) because in order to nap, I had to be holding Sadie and if I was interrupted by the doorbell that would be bad. But by that time Sadie was beyond able to nap, she fell asleep for 2 minutes then woke up all happy. (I hate when she does that because it's so deceiving...it only lasts 20-30 minutes before she's horrible again) The lady asked me all the questions, and as I answered that Sadie can't do this and can't do that, she said, "is this the first time you've applied for ALTCS?" I told her no and that we were denied the first time. She was shocked.

We had a conversation about Sadie's diagnoses and how you don't grow out of CP or get cured of it. We talked about what CVI (cortical visual impairment) meant for Sadie's vision long term. And she couldn't believe we had to apply twice with those kinds of diagnoses. I also mentioned that Sadie is 10 months now, and she still can't do any of the things on the 6 month skill list they came out with before. She told me she will make sure we get approved this time around. yay!!

Just last week I got the calls telling me we've been approved and we're now in ALTCS! hooray! I even have a list of agencies to call for respite. My support coordinator immediately pushed through approval for 8 hours a week for respite so that we could get that ball rolling immediately when we return from Oregon. This news is such a relief for me and for our family, and I am excited to see where it takes us.

Friday, December 10, 2010

Family Christmas Letter

In the past we've sent out a letter with our Christmas cards updating everyone on our year. I just sent our Christmas cards and decided not to include a letter this year. My reasons are: 1. too much has happened to sum up on a page, 2. most people on our Christmas card list have been keeping up with us, and 3. it saves paper to just do it here and remind people to come read our blog. So this post will serve as our yearly family update, and even if you didn't receive a Christmas card from us, I hope you feel cheered by our holiday update.

Our year began with the birth of our daughter, Sadie on January 19th, and then quickly took all sorts of unexpected twists and turns to places we never even imagined. She was immediately hospitalized due to lack of oxygen, which despite amazing technology, resulted in some permanent brain damage. At one point we were told our little miracle would not survive, and we prepared ourselves to say goodbye. But here she is about to celebrate her first birthday, and although she comes with her own set of challenges, we can't help but feel blessed when we look at her. The fact that God chose us to be her parents is nothing to scoff at. This deal we got is not for the faint of heart!

Top ten lessons Sadie has taught us this year:

10. The government, while a huge, slow-moving organism, does do good things. We are thankful for their early intervention program that has provided Sadie with therapies.

9. The Foundation for Blind Children Infant Program is run by and attended by people I cherish and love and admire, even if some of them don't know my name.

8. Mama knows more than the doctors sometimes...like when I know my child isn't having seizures.

7. Drugs, while usually bad, can sometimes be very good.

6. Not all kids fall asleep in the car!!

5. Our marriage and our friendship is stronger for coming through this together.

4. It's worth it to just buy another bouncy chair.

3. Sleep is NOT overrated!

2. We have amazing friends and family.

1. Never underestimate the power of prayer.


We have also had the privilege of attending and participating in many events because of our involvement with Phoenix Children's Hospital and The Foundation for Blind Children. I have told Sadie's story on the radio, we met an MLB pitcher, we almost got to meet an NFL quarterback, we've seen the inside of the new hospital, we attended a reunion of all babies in the Neuro-NICU, and I will be running a half marathon in January to raise money for the hospital. I can't wait to see what opportunities 2011 will bring.

More than anything else we have learned many many things this year. As we were not prepared for this lifestyle, this year has been one big cramming session about neurology, development, and resources for the disabled. The brain is an amazing organ, Sadie's especially, and I imagine that 2011 will only bring us more education.


Speaking of education, I got a new job this year teaching online school. 9th grade English. It's the perfect thing for me to do in that it allows me to be home with Sadie, and permits flexibility in our schedule. It's been a little overwhelming these first few months, but as we finish out the semester, I feel somewhat prepared to start the new one. The best part about my new job is that I work with a wonderful group of people, who all love their jobs. I feel like joining the Arizona Virtual Academy has been like being welcomed into a big, loving family.

Brian still works for Starbucks in the Foodservice Dept. and not a day goes by that we aren't thankful for his job. He also gets to work mostly at home. Even though he often spends the majority of his day out and about town, or travels to another state overnight, he gets to enjoy a home office, and Sadie and I get to enjoy Daddy more than a lot of families do.



Thank you for praying for our family this year. Thank you for crying and rejoicing and celebrating with us. We can't wait to see what 2011 brings, and we can't wait to share it with you!

Love,
Brian, Christie, and Sadie

Wednesday, December 8, 2010

Quarterback sneak

Last Friday, we attended a Phoenix Children's Hospital fundraising event. We're on a list now, so we get called for things like this all the time. This one sounded fun.



PCH is building a brand new tower as an addition to their hospital. It's 11 stories high and has basically changed the Phoenix skyline. It's beautiful...and we got to go inside it!



This event was put on by the Walton family (as in the owns WalMart family) and is traditionally open to PCH's biggest donors. This year it was to celebrate the hope PCH brings to so many families by lighting a Christmas Tree outside the new tower, as well as officially lighting the building. This new tower has these cool LED lights that change color, as well as this rainbow light on what must be the top floor. You can see it from the freeway and it's spectacular. We were actually lucky enough to see a test lighting one night last month as we were driving by on the freeway, so we already had an idea of how amazing it looked.



We were asked to come an hour early (I had no idea why at the time...I just figured it was to give a lot of extra time to make sure we were all there and knew what we were doing.) Then we were ushered way off to a trailer because the donors didn't know we were there, we were going to be a surprise. See, the plan was to light the Christmas Tree while this little girl (who sings like an adult) sang a song. Then each of these PCH patients was to walk up on stage and hang a special ornament on the tree. And, it pretty much went like that...but it wasn't as spectacular as it sounds. The best part was that a girl named Carolyn, who has a rare disease where her bone marrow degenerates, told her story of spending Christmas quarantined in the hospital one year and how her family and the hospital staff went out of their way to make Christmas special for her anyway. And as she told her story and as they lit the tree, you could see the current hospital building in the background, with kids and parents standing in the windows watching and all their lights flickering on and off. It was as if they were having their own lighting celebration and we were all invited...instead of the other way around.



Once everything was lit, and everyone was done talking, we got to go inside the new building (just the lobby)...which was most of the reason I wanted to be part of this event. It was beautiful and shiny and sparkly. All along the walls, there is a strip of mirror at toddler height. So fun. And the elevator bay reminded me of the cruise ship we went on for our honeymoon. You can tell they spent a lot of time really making it beautiful (why didn't I take any pictures of it?! I don't know...silly of me huh?)



We walked around and admired the Christmas Trees they had inside, then we left before our child became too horrible. Her routine had been interrupted and she didn't like that instead of letting her go to sleep, we bundled her up and put her in the car. She screamed the whole way there. In fact, when we got there, there was valet parking (another wonderful feature of PCH that I take advantage of) and they thought we were in the wrong place and that we were looking for the ER! They kept directing and redirecting us, when really we just needed to stop and GET. HER. OUT! All that to say, it was good that we had over an hour to wait when we got there, because Sadie needed a nap! And she got one!! She was so out we had to WAKE HER when it was time to go! But by the time her and daddy had walked up and hung the ornament, she had listened to that little girl with the big voice sing, and she had gone inside where everything was bright and shiny and visually stimulating, she was ready to be done and back asleep.



The whole night seemed a little haphazard and unorganized and people kept apologizing to us for making us wait all the way far away in a trailer, it all seemed a little strange. Then I got an email late Sunday afternoon. We weren't the only surprise that was planned. Kurt Warner (retired AZ Cardinals Quarterback and recent Dancing with the Stars participant) and his wife were also supposed to come out on stage with us. And they had requested to spend that hour-long wait with us in the trailer visiting and taking pictures. Their family has a special needs child (I guess he's an adult now though) and are big supporters of PCH. But apparently at the last minute they had to cancel, leaving everything feeling disjointed and planned wrong.



Although I understand now why we waited where we did and for how long, I am SUPER bummed about not meeting Kurt Warner. I may have been more excited to see him than any of the children in that room. He is definitely one of my heroes and it would have been a great honor to hang out with him and his wife, who are wonderful people (so I hear). And the picture we would have taken with him, would definitely have been something worth framing and hanging in the living room. Someday, Kurt Warner...some.day.

Thursday, December 2, 2010

Swings and Weighted Blankets

As I've talked about before, it's a necessary part of Sadie's day to bounce. We've busted through one bouncy chair and are on our second, which she is getting dangerously big for. (I say dangerously because it may be a rough couple of days when we have to finally stop using the bouncy chair) However, in those (not so) rare times when the bouncy chair just won't do (or is unavailable), we've found that swinging Sadie in a blanket works well. This requires 2 people, each holding two corners of a blanket, and while Sadie lays in the center of the blanket, the two people swing her from side to side. We reserve blanket swinging for emergencies as it requires a lot more effort than the bouncy chair.

We have been talking for a while about what we're going to do once the bouncy chair is no longer an option for us, and the best solution we've come up with is a therapy swing. Preferably, a swing that is shaped like a hammock. There are a MILLION different kinds of therapy swings, we've come to find out, and they're not cheap! But we found someone locally who makes them and sells them at a reasonable price. (you can check them out here: Affordable Therapy Solutions)

Of course I called this company and asked if we could come by and try it out before we bought one. I also confirmed that they have a return policy I could live with. What they told me was that I could absolutely return their product if it wasn't working out for me. They also said we could come try out the swing first, just call ahead of time so they're ready for us. I sort of got the impression they were operating this business out of their garage, but quickly dismissed that because how in the world would they have room in their house for this kind of business?!

When we finally got out there to try out a swing, we learned that they were indeed operating out of their home. It's just a husband and wife (and a bunch of neighbor kids) doing this whole thing. They have 2 autistic kids, one who's pretty high-functioning, the other seemed to be non-verbal and have some violent tendencies. And there were hooks mounted in their ceiling in just about every room! They had the perfect special needs kid house!

We tried out a couple of different kinds of swings, which Sadie seemed to hate (I think she was pretty overstimulated), and settled on buying the one made out of a canvas material rather than the stretchy lycra material. Then we asked them about weighted blankets.

Weighted blankets are something that was suggested to us a long time ago by multiple therapists. They can help give a child (or adult) that deep pressure body awareness that they're seeking. Weighted blankets can be calming for sleeping or just when your child is having a sensory meltdown. And once these were mentioned to me, I noticed that Sadie really likes to be held tight when she's nursing (especially if I'm trying to get her to fall asleep). Often when she wakes in the night, all she needs is me to put my hand on her and apply a little pressure for her to fall back asleep on her own. This is also how I get her to calm down and fall back asleep if I've pulled her into my bed with me. The problem was that all the weighted blankets we saw were $300+!! We had talked about making our own...with rice. But, how were we going to insure that it'd be washable (Sadie has sort of a puking issue, if you haven't heard.) And we had this big, complicated idea where we'd have cells in the blanket and pockets of rice that would be removable somehow so we could wash the blanket. Yeah right, like that was going to happen!!

So, when I learned that this couple who runs this company has weighted blankets for $50, I got really excited!! Something I had read was that you don't want the blanket to be more than 10% of the child's weight. Sadie weighs 19 pounds, but all I saw were 5 pound blankets...I figured that'd have to work. But when we got there they said they also make 3 pound blankets, only they didn't have any currently made so we couldn't take one with us that day. Bummer. I was more excited about the blanket than the swing, especially after seeing Sadie's reaction to the swing.

They'd have to make us one and send it in the mail. But I was supposed to pick out what I wanted it to look like...like I cared. I told them it really didn't matter to me what it looked like, but she pulled up her website quickly on the computer and was showing me the patterns to choose from. They were hard to see and I was having a hard time choosing, so she goes, "forget it, come with me..." and she let me upstairs. The upstairs of their house had been taken over by their business. I think they had even kicked the children out of the bedrooms and they were sleeping on a mattress on the floor in the den (where there was another swing hanging from the ceiling)! She led me into a room that had a GIANT sewing table/cutting board in it (so jealous) and in the closet were huge bolts of all sorts of fabrics to make blankets out of, both fleece and flannel. I got to customize Sadie's blanket with the fabrics I wanted. Then she showed me what she puts in the blanket to weight it. It was like glass sand. She quilts these tiny tiny glass beads into the blanket, and because they're glass, it's washable!! Very cool.

So, our weighted blanket came in the mail this week. It feels VERY heavy. You'd think 3 pounds is light, but it feels much heavier than 3 pounds. It's super cute and Sadie likes it. I've been putting it on her at night and during naps. She no longer lays in her bed and screams. And at night, she no longer kicks and rolls the blanket off of her. It probably keeps her warm too. I'm really excited about this!

If you have a special needs kid or know someone who does, check out Affordable Therapy Solutions they are so great. They understand that a family with a special needs kid doesn't have a bunch of money lying around to just spend on therapy products...and they can be EXPENSIVE! So, they make them affordable (hence the name). They will ship all over the country, and they're return policy is amazing.

As far as weighted blankets go, you can read more about their therapeutic uses here. But, you don't have to have special needs to benefit from a weighted blanket. I recommend buying one for yourself or for your "normal" kid. They are cozy and appealing to a lot of people who need that deep pressure input. It might just be that great Christmas present you've been looking for!!

Monday, November 29, 2010

vision update

Today we saw the "famed" Dr. Cassidy.

Ever since we've been attending the Foundation for Blind Children's (FBC)infant program all we've heard about was how great Dr. Cassidy is and how he's done all these amazing things for all these children and for the foundation itself. So, naturally, I thought, "I HAVE to get my baby in to see this man!" And it was an easy decision to make seeing as how I wasn't real impressed with the eye dr. we'd been seeing anyway. Plus when I mentioned it to Dr. Wendy (our pediatrician) she almost peed her pants with excitement just at hearing his name...that was enough for me!

When I called to make the appointment, they were scheduling almost 6 weeks out! So, we've been looking forward to this appointment for a while now. I don't know what I was expecting, he was nice and all...I think all the hype got me over-excited to meet this man. I was under some impression that he looked like Santa Clause and that when he met my baby he'd scoop her up and kiss on her all the while talking about how beautiful she is and how all we have to do is _______ and her vision will be perfect. That didn't happen. He didn't even resemble Santa Clause a little bit. He wasn't even old.

What he did do was give us some hope.

Dr. Cassidy told us that Sadie does have some nearsightedness as well as astigmatism in both eyes (she gets that from her daddy and her grandpa, I think). He said she will need glasses down the road, but not yet. He wasn't concerned about her vision delaying her development severely at this point, but as she gets older it will be important for her to have those glasses. He also said that right now her prescription will probably change a lot between now and next time we see him, so there's no need to waste money on glasses right now. Once we see her prescription changes slowing down, then we'll talk. And that may be in the next 6-9 months. It's highly likely she'll have glasses by the time she's 2.

He also said she has some nerve damage in her left eye, but not really any to be too concerned about. When we brought up the possibility of there being a dominant eye, he said it could be the right eye just because it's probably stronger due to it not being damaged. But, while he doesn't recommend patching for therapy, he did recommend patching to see if we could determine a dominant eye. So, we got a sample patch and we'll start our next Sadie science experiment.

Another thing we talked about was that yes, she does have CVI (cortical visual impairment) and that her vision will continue to improve until she's 15, but the first 4-5 years are the most critical, and it's then that we'll see the most improvement. He said the best thing we can do is stimulate her with faces and big, exaggerated movement with our mouths and our voices. He said we need to protect her a little because with her visual impairment, noises will startle her more since she's not really ready for them.

And for those of you who have commented on her big eyes, you are correct. Her eyes are bigger than normal...but not by much. He said normal is 19.5mm and hers are 20-20.5mm. We kind of talked about that being because of her small head. But we never talked about the implications of this.

So, there you have it. Hope. And I'm a little excited for Sadie to wear glasses, mostly because she'll be able to see, but also because she'll be so cute!!

Saturday, November 27, 2010

Christy Brown's Left Foot

Tonight we watched a movie called "My Left Foot." It's the story of Christy Brown (who's a man), a famous author, poet, artist, who had cerebral palsy. It was adapted from his autobiography of the same name, and it was a good movie.

He was born in the 30s in Dublin, Ireland, and just like the doctors told us, they told his mom that he would be mentally retarded, a vegetable. But, he showed them he was smart, he could write, he could think, he could paint, and eventually he could talk. And he did it all with his left foot...except for the talking, he did that with his mouth!!

I think what moved me the most about the movie/story, was his mother's love for him. He had about a million brothers and sisters, but he was never treated any differently. Even the neighborhood kids included him in their games and things, wheeling him around in a wheelbarrow before he had a wheelchair. But nobody loved him like his mother. When no one else believed in him, she did. And when his dad was laid off and they had no coal to heat the house and were eating porridge for every meal, she didn't dip into her savings she was setting aside for Christy's wheelchair.

And Christy loved her back, even before he could talk or communicate in any way, you could tell they had a special relationship. She told him when he was young that even if she couldn't understand him, God could, and she took him to church. She loved that boy unconditionally. When he had more to give, he gave back to his mom, to thank her for all that she gave him for so many years.

I know that as a mother, I am put into a special role. There is a bond between me and my children that is indescribable, that you can only understand if you've had children. But there's something even more special because my child is disabled, something too deep for words. She is my beautiful baby, the one I worked so hard for, and she is perfect to me the way she is. I know that we're gonna come up against hardships; unkind words, staring, questions, but that's only because other people don't know my baby like I do. And when she's 2 and probably not walking yet, that's okay, because she'll probably be able to do some form of a crawl or a roll, and that will be more than she can do now. And that will be awesome. Already, we look at what she can do and think she's awesome.

I hope that someday, when it's time to write Sadie's story, that she will remember me (and Brian) as supportive, loving, and always encouraging to her. I hope that we can be the kind of parents who push her to always do her best and everything that she's capable of...just like anyone would expect of their children without handicaps. And I hope that she becomes an independent person, capable of loving and living life to its fullest.

If you want to enjoy a very sweet movie (or maybe you're ambitious enough to get the book, I know I'll be finding it at the library soon!), I highly recommend "My Left Foot."

Wednesday, November 24, 2010

Thanksgiving




















I've been reading a lot lately on Facebook about a lot of people being thankful. It's been really neat to read, and I'm sure it's a good exercise in grattitude to give thanks everyday(publicly) for a month. I haven't done that. And it's not that I'm not thankful, I think it's more that I'm TOO thankful that I have a hard time putting it into words.

Thanksgivings in the past have been nice and fun and a special time with family. I've always liked Thanksgiving for the smell of food and hanging out after stuffing our bellies, but I don't think I've actually stopped to think of how thankful I am. Maybe that's because up until this year, I didn't understand what it really meant to be thankful.


Sometimes I complain and grieve over what my life is...and what it's not. But when it comes down to it, I am thankful for what I have more than sad about what I don't. Someone recently told me that I am amazing for what I've gone through and what I do on a daily basis. I told her I'm not really that amazing, I just do what I have to do. Everybody has their crap, right? My crap is just more public and noticable.


So, here's what I'm thankful for as we enter into this holiday season (my attempt to put it into words). I am thankful for friends and family who supported me through my pregnancy, who were all there for my homebirth, and then didn't leave my side when we were spending long days at the hospital. I am thankful for people who I don't even know who cried with me and prayed for my family in the darkest days of my life. And I am thankful for the people closest to me who cried with me and prayed for my family and held me and hugged me in the darkest days of my life.


I am thankful for the wisdom of my husband, who can see through his emotions (and mine) and make good decisions. I am thankful that Brian loves me and loves Sadie more than he could ever express through words (or drunk texts). I am thankful that he is helpful when I need him to be, even if it's the middle of the night, or in the middle of a football game. And I am thankful that he has a job that can support us, that is good to him, that he enjoys.


I am thankful for grandparents and how much they love Sadie. Through the screaming car rides to the hospital stays, my dad has always been willing to just be around and contribute. Mary Jo is friends with (what sound like) the most amazing special education teachers at her school who have passed on valuable information to us about Sadie. Plus I think everytime we've seen her, she gives us/Sadie a present. Pam, even though she's been away traveling the world all summer, has kept up with Sadie via skype, and is eager to be here for the winter so that she can babysit! And my mom, who said early on to someone, "we don't know what she'll be, but we'll just love her!" has stayed true to her word on that.


I am thankful for Michelle and her new foundation offering movement therapy to so many kids in Arizona and around the country. She has helped Sadie to see. She has helped Sadie to be aware of her body. She has helped Sadie calm down and not scream all day. She believes in Sadie and doesn't put any limits on her abilities. And she has helped me with her wisdom that can only come from experience and parenting a special needs child.


I am thankful for Dr. Carballo, the neonatologist that cried with us in the NICU, both sad and happy tears. I love seeing her now and showing off my big girl, who may not be "normal" but who is alive, which is WAY more than she ever guaranteed us when we left the hospital.


I am thankful for Mary and Nedra, my midwives, who I tell everyone saved Sadie's life. They got her breathing, they got her to the right hospital, and then they stayed and didn't forget to take care of me too. I am thankful for every hug and hand-squeeze they gave in the NICU. And I'm thankful for their silence and tears when they knew there were no words that could make me feel better.


I am thankful for Sundays and that they no longer hurt as much as they used to.


I am thankful for kitties, who still love me even though I've neglected them for pretty much the last 10 months.


And finally I am thankful for my baby. She is the most amazing, most screamtastic, cutest, most squeezable little person in my life. I have never wanted to squeeze nakey cheeks more than I do with her. I have never kissed a living being so much in my life and still felt like I haven't kissed her enough. I have never just wanted to watch someone sleep or wanted to squeeze a little body so tight. When I look at her I am flabbergasted that this little being grew inside me and now weighs almost 20 lbs. And I can't even comprehend that she loves me even more than I love her...and she probably doesn't even know what love is. She looks for me when I walk in the room and she hears my voice. She falls asleep against my body at night. She knows to nurse from my breasts. She is amazing and wonderful and so full of more life than we ever thought possible.


I could go on forever and ever being thankful, but that would probably get boring...so I'll stop. What it comes down to is that this family has had an amazing year, one full of ups and downs, but mostly ups. And we are ALL thankful for all of it.

Sunday, November 21, 2010

X-baby banana

My daughter is a mutant X-men style. She's got Professor X like powers and she's willing to use them. Last night, after we had put her down to sleep, I went into her room. I just looked at her for a moment, and the mutant er...my daughter suddenly startled.

When she startles she looks a little like a tiny symphony conductor blasting her arms up in the air as a piece of music hits an apex of sound. Once those arms menacingly arise, they quiver as though encouraging the orchestra to keep the time and pace of the musical score. I, in awe filled terror last night, scurried away as quickly as my tip toed steps would allow.

I told my wife that I was statuesque, resting for a solid 7 seconds staring and her with the only sound emanating from my body being love and breath. Christie replied, "She senses you." "What do you mean?" "She's aware in ways we aren't."

****

The other exciting event of the day was our donation. We had some eggplant bushes that had taken over the garden. They were blocking sunlight form our carrots and leaks and had to go. So I pulled them up. Sadly, my wife and daughter decided they didn't like Eggplant. So I cut every edible eggplant off of the bush, put the bushes into a tumble-composter. I easily had 40 pounds of eggplant. They filled up 3 giant plastic bags we had.

I took them to a local food bank at a Church, to which the lady asked: "why the donation?"
"We can't eat all of these."
"My family can," she quipped with a grin.
Delighted I left her with lots of eggplants she can use that we can't. I hope tomorrow night at dinner, someone somewhere is eating eggplant that we grew in our garden.





Thursday, November 18, 2010

Nothing is ever guaranteed in life

Today I got a phone call from our Bradley Birthing teacher. She told me that a couple we knew from classes lost their baby. This couple was taking the class as we were nearing the end and were coming back for review. We liked them immediately because we had a lot in common, mostly because they were also having a homebirth. Then we reconnected after our babies were born when we both came back to tell our birth stories. She had had a fast and a little bit scary birth, but she had a beautiful little girl named Savannah. Soon after Savannah was born, they moved to Texas. He was military and was being transferred, so off they went, all their belongings and their 6 week old baby.

I was shocked to hear the news this morning. They don't know what happened, so they're calling it SIDS. She stopped breathing in her crib, and when she was found it was too late. I guess CPR was performed and paramedics were called, but it was all too late. Wow. That poor sweet family, how my heart goes out to them right now.

It really brought me back to the day we were ready to say goodbye to Sadie. That was hard, and we cried, but she was 5 days old and we hadn't really bonded with her the way these parents had after knowing Savannah for 7 months. I can't even imagine what they are feeling right now. My heart hurts for them.

But it got me thinking about death.

Not too long ao, I got to talk to another special needs mom who comes to The Foundation for Blind Children on Friday mornings. She never stays for the parent meeting, so I don't get many chances to talk to her, but her baby looks a lot like Sadie, so one day I started asking questions. I learned that this is her second baby, her first had the same special needs. The doctors don't know what it is, but they're pretty sure it's genetic. I asked about her son, she said he died last April. And I started wondering what it must feel like to have a baby and be faced daily with the reality that she may not make it any longer than her brother, who was 5 years old. Would that wrench my heart to bury both my children? She is amazingly strong, I think that reality might send me over the edge to the loony bin.

Both of these stories got me thinking about our own situation. We are so lucky that we didn't have to say goodbye to our baby. She is so cute and, for as much grief she causes, she provides us with even more joy. But it never crossed my mind until hearing these 2 stories that we could lose Sadie someday. Is that weird to think about? I mean, nothing is guaranteed in life, and really any of us could lose a child, so why does this bother me so much?

I guess it's because there is still so much we don't know about Sadie. She'll be 10 months old tomorrow and I feel like I still have as many questions as I did when she was 10 days. All I can do is enjoy every minute, every day that I get to see her little smile and squeeze her chubby little thighs, because we don't know the future. But if the future does hold the unthinkable, I want to be able to look back and remember Sadie with a smile, knowing I loved her with all my heart and gave her everything I've got.

So, please pray for baby Savannah's family. They will be coming back to AZ to hold a memorial service with friends and family. We hope to attend. I wish there was more we could do.

Sunday, November 14, 2010

Sadie's fundraising story


I had a perfectly normal pregnancy, my birth was even pretty average...although long. But when my baby, Sadie, was born, she wasn't breathing. There was meconium covering her body and in her nail beds, it had obviously been there a long time. She had been sick, and we didn't know it.

She was immediately rushed to the hospital (we had a home birth), where an experienced doctor quickly discovered signs of brain damage. Sadie was transferred then to Phoenix Children's Hospital's NICU, one of only two Neuro-NICUs in the country. There, Sadie was put on brain cooling.

When babies are born and not breathing, brain damage can set in pretty quickly. But, if their body temperature can be cooled down to a hypothermic state, they've found that they can stop the damage from continuing, and even reverse it. But when Sadie wasn't showing improvement the way other babies have, the doctors did some more investigating.

Group B Strep was found in my placenta and the consensus was that the infection, although it didn't reach her, damaged her brain through contact with neuro-toxins. She had been very sick inside my belly and nobody knew. This is probably the stress that caused her to pass the meconium, which she must have aspirated, which was the cause of her not breathing when she was born.

What we were told at the hospital was very grim. We were told that brain cooling could not reverse Group B Strep damage. She couldn't suck, she was having trouble breathing independently, her eyes were barely open...and they told us she'd always be that way. A vegetable, they called her. So, we made the decision to unplug the breathing tube and see what happened. We were all prepared to say goodbye, all of us but Sadie, that is.

Fortunately, the damage to her brain that caused the breathing, swallowing, and alertness issues happened to be the hypoxic event (lack of oxygen), and in that respect, the brain cooling saved her life. When we unplugged her, she started to wake up, she continued to breathe on her own, and she started to swallow. Sadie was the 47th baby to be cooled in the Neuro-NICU at Phoenix Children's Hospital. And to this day, the doctors are amazed that she is still alive.

We were only in the NICU a week, but since we've been home, we've come up against a number of other obstacles. We fought to get into the PEMU (Pediatric Epilepsy Monitoring Unit) at Phoenix Children's Hospital because we believed Sadie was NOT having seizures, and refused to medicate our baby unneccessarily. We had an MRI when Sadie was 6 months old. And we visit a special needs clinic at the hospital where we see Dr. Wendy, Sadie's pediatrician. We've also needed and used the Emergency Room there. Phoenix Children's Hospital is an amazing place, full of wonderful and caring people.

Sadie is the most amazing screamy ball of cry that has ever happened to us. She has since been diagnosed with Cerebral Palsy, Cortical Visual Impairment, and Microcephaly, and she still carries the Epilepsy diagnosis even though, for now, she is seizure free. But she is alive, and she's the cutest little thing, full of spunk and spitfire. She is strong and determined. Even though coming home on a feeding tube, she learned how to breastfeed. She is now eating solid foods with fervor. And she knows what she wants, whether it be to nurse, to bounce, to sit, or to go for a walk in her stroller.


None of this would have been possible without Phoenix Children's Hospital (which I could barely find that first time, but now I can drive to with my eyes closed!), and our story is just one in thousands just like it. We are so grateful for everything they've done for us, we can only hope that the little we can do to help them raise money will help other families like ours in the future.

I am training (and it is NOT easy) to run 13.1 miles, a half marathon, to raise money for Phoenix Children's Hospital, and I'd really love for you to help by giving. Anything will be appreciated, every dollar is important. And to encourage you, I am holding a raffle for ONE MORE WEEK. On Sunday, November 21, I will be drawing a winner for a quilt, handmade by my mom, from the names of the donors to my fundraiser. For every $5 you give, you will receive one entry into the raffle (that means $25 is 5 entries, etc). Please consider helping, by donating to this wonderful hospital, where babies and children's lives are saved everyday.


You can donate by clicking here.

Saturday, November 13, 2010

True Food Kitchen

I get regular emails from Phoenix Children's Hospital because I'm on the "Miracles in Motion" team raising money by running the half marathon. And sometimes we get invited to do really cool things because of it. In this case, we got free dinner.


There is a new restaurant opening in Scottsdale called True Food Kitchen. And they had a practice night where we come eat their food for free so their servers and chefs can practice cooking and serving. When I called I asked about the menu, because of my dairy free status, and she said they had vegetarian and vegan menu choices. I figured a place called True Food Kitchen would be pretty accomodating. So, I booked it. It was when my mom would be visiting and we could call it a birthday celebration. They only had reservations left that were really early (5:30, 5:45) or really late (8:00 - 9:00), we booked ours at 8:15. I figured 1. Sadie could be bathed and jammied by then, and 2. since the restaurant is on the complete opposite side of town we'd have less traffic later at night. It ended up working out perfectly because Brian didn't even get home until after 6:00.

Sadie screamed the whole way there, totally stressed out my mom, but then she turned into an angel child and we didn't hear another peep out of her. She actually fell asleep while we were eating dessert and only woke up when put in the car. I think it helped that Daddy held her all evening. She can be such a good baby when she gets what she wants!

There were "rules" to our dining experience, but they were very generous. We all got to order a drink (we never order drinks, we usually just drink water. In fact we had to convince Brian to get a drink because it was free), and they had fun drinks they called "Natural Refreshments." Mine was matcha (the holy grail of green teas) and honey. My mom ordered one with ginger, agave with soda water, and Brian's had pineapple and orange juice mixed with coconut water. They were all very interesting (of course we passed them around) and very good!

Then, because we were a party of 3, we got to order 2 appetizers (something else we never order). We had a hard time agreeing, but settled on the hummus and the crudites...I think the thinking was that when the pita was gone, we could dip the veggies in the hummus. We were very impressed with both. The crudites were served to us like a bouquet in a jar with ice water, it was pretty neat.


Everybody was allowed to order 1 entree, of course, but they asked us to all please order something different. That wasn't hard. The food was unique, in a good way. It was healthy, minimal meat, mostly fish or chicken, sustainable and organic. I ordered some curry chicken with brown rice and veggies, Brian got a spaghetti squash casserole, and my mom got ramen with white prawns. The portion sizes weren't huge, which was nice because we had appetizers, but they weren't small either. We definitely didn't leave hungry, but we weren't overfull and bloated...and we even had dessert.

Dr. Weil was actually there when we were!! I get the impression this is how the restaurant balances their menu as well.

Dessert is definitely something we go without when dining out, but they allowed us to order one for the three of us to split. We had a hard time deciding because my mom doesn't eat fruit after noon, and I don't do dairy...we finally settled on the flourless chocolate cake, and got the ice cream on the side. It was the size of a ramikin, but just enough for the 3 of us to share. It was warm and gooey and rich and chocolatey, seriously the best thing I'd eaten all week...and it was vegan.

But the other dessert we almost got was made with olivello berries. We had read that they are the only restaurant in the nation to serve these berries, which are buckthorn seed berries...so we really wanted to taste them! Luckily our waitress was awesome, and when we couldn't resist the temptation of the chocolate cake, she offered to bring us a sample. It was pretty yummy, but I was glad we went with the cake!

Overall we really joined our experience, the service was friendly, the food was fantastic, and the atmosphere was comfortable (we ate outside under the heatlamps, it was pretty cozy). I would recommend True Food Kitchen if you have one near you, just for the experience of foods that truly are different.

Sunday, November 7, 2010

Foundation for the Blind Children Fundraiser

There is a thought that the main difference between Tolstoy and Dostoevsky is class. Tolstoy wrote about the upper strata of Russian society while Dostoevsky concerns were with the plebs. We, team Dostoevsky, suddenly found ourselves thrust into a bizarre world filled with glittery dressed women with breasts protruding from all angles, and men completely wrapped in suites made from material I only image left them sweaty and unable to raise their arms above their heads.

We started our night driving to a very wonderful steakhouse situated on the southwest corner of Scottsdale Fashion Square. If you're unfamiliar with the reputation of Scottsdale, just know that having the term "Scottsdale" in one's mailing address raises one's house value 100k just based on status. Being near the fabled Fashion Square only made this location that much more posh. We do not live near Scottsdale.

We avoided the Valet and walked in. We needed access to our car in case of Sadie melt down and waiting for Jeeves to return with our 10 year old 175,000 mile car is not an option. We entered the main area complete with giant ice carvings, ladies in black dresses wishing us to "enjoy yourselves!" and a troika of dazzle. We entered a courtyard that was jam packed with Tolstoy's with a smattering of Dostoevsky's parading blind children around.

The event was geared towards the wealthy. These people put up a certain amount of money to show up and eat. They were then allowed to bid on various items that have been put up for charity. There was a day at Bondurant Driving School, various weekends at Pine Top, and trip to Italy where you can be toured around with a zany tall Italian with poffy hair, a regal accent and sense of Charity. Or these guests could simply donate to the cause.

Our purpose there, along with the rest of the Dostoevsky's, was to show who the foundation helps and allow them to actually interact with beneficiaries. In a way I felt as though my family was paraded around where these Tolstoy's could dote and fawn and pump money into a cause to make them feel good about themselves. Then again, I'm grateful that they are generous enough to donate money to the foundation which gives us so much great assistance and support.

We entered the throng of tightly packed people following a small trail hoping to find someone we knew. We were immediately cornered by what we assumed was the owner of Barrett-Jackson and his group of lovely ladies. The women were so nice. They asked about Sadie and why she was a part of FBC. They marveled at her blue eyes and red hair. Commented on her calm disposition, and eventually asked to hold her.



This lady was currently (well not just at that moment but you get the idea) attempting to become pregnant herself and loved Sadie. The red sparkly dress was something Sadie found mesmerising.



Sadie was then passed to Muffy. (real name: Audra. Her grandma called her Muffin and apparently throughout her life it was reduced to Muffy. She went out of her way to clarify that she had never been on the pole. Well, okay then. I did not respond: having to clarify one's name makes me think that one's name may not be fitting. We spent an exorbitant amount of time discussing them name throughout the night. I digress.) Muffy enjoyed Sadie time too.

This continued for a while as we wound throughout the crowd. We met some people with special needs children of their own, and others who I assume where there solely as this happened to be the fun socialite event of the weekend. At one point, Christie asked if there was anyone famous there. I suppose, depending on interest, one could say the Barrett-Jackson gentleman, however that paled in comparison to the below gentleman.



Dan Haren is a very good pitcher. He is nearly a 5 WAR player the last few years - which for the uninitiated, is very, very, very good number (Three verys should help convey the importance of the 5). I saw him immediately and made eye contact, smiled and he walked on quickly, I imagine in his mind thinking, "Don't ask me for an autograph." A moment later he passed us again, we asked for a quick picture, thanked him, and away he went. I hope to make large contributions.

Shortly thereafter Sadie melted down into a hungry, sweaty, hot, overstimulated, mess. We left the Tolstoy's and drove home to a nice scream concert from Sadie. We hope that in some small way we helped to inspire some people to donate a little bit more to the foundation. Even though the entire situation was awkward (the wine people were drinking was of the 4 dollar bottle variety) it was for a cause we care about.

You can donate to a great cause here: http://www.firstgiving.com/sadiebeck

Saturday, November 6, 2010

Team Neuro-NICU...and the Yeti

This morning we attended the second ever (but our first) Neuro-NICU reunion. They had a theme "Team Neuro-NICU" and they made every brain-cooled child a jersey (red t-shirt) with their number on the back. Sadie's number is 47. She was the 47th baby to be cooled at Phoenix Children's Hospital, which has one of only 2 Neuro-NICUs in the country. (Let me clarify that many hospitals have the brain-cooling technology, but to be a Neuro-NICU your staff has to have special training and you have to have capacity to cool a certain number of babies and there are a number of other criteria you have to meet.)

I was a little nervous about going to this event. I was afraid it would bring back some tough memories...and it did. But the idea of showing Sadie off to a bunch of people who thought she was going to die was too hard to pass up! What I didn't expect to be so hard was seeing all the other families, families with tiny babies that are just starting out their journey. They are so thrilled and overjoyed with their little babies and excited they're doing so well...but behind those smiles there is a fear of the unknown, a fear I am familiar enough with that I can recognize it a mile away.


We got to see Dr. Carballo, the neonatologist who heads up the neuro-NICU. (I don't know why we don't have any pictures with her! Sad.) She is a wonderful woman who hugged I think, every single person who walked in that door. Even though she knows that this brain cooling saves these babies, she is still so genuinely happy for every family that she has helped. I remember her crying with us in the NICU, over the bad and the good. I remember feeling how much she really cared about us and about Sadie. What a hard and wonderful job she has.


We also got to visit with Dr. Blackham, she is the developmental psychologist that tracks Sadie's progress developmentally. She is also a wonderfully sweet woman. She is addicted to coffee and walks around in the sock feet, and I love her. She held Sadie a little and loved on her some. It was good to see her.


And we got to see Amy. We dubbed Amy the Neuro-NICU ambassador. She was as busy as a bee in that place walking around meeting people, swapping stories, and introducing people to others. At one point she was getting everyone's email/facebook information to start a group! She is so great.

When Sadie became an official graduate of the Neuro-NICU, she was given a little beanie baby of a polar bear wearing a shirt that says "NICU graduate." It's cute, the officially mascot of the Neuro-NICU is a polar bear...you know, because he's "cool." So there was a person there today dressed up like a polar bear. Only he looked more like a Yeti. Decide for yourself! Either way, he was a little creepy.


All in all it was a good morning. It was good to be there, I think it's an important step in the healing process (sorta like returning to Auschwitz...okay well maybe not that dramatic, but you get the idea!). Sadie did really well and kept her cool and of course she showed off her cute self like she does so well. It'll be good to go back next year and see how far everyone has come.