Friday, December 31, 2010
Anyway, check out May, who is about 9 months older than Sadie. She's really doing great!
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
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
Sadie and her second cousin, Roman (he was born 10 days after her)
Saturday, December 25, 2010
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!
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...
Thursday, December 23, 2010
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.
Wednesday, December 22, 2010
The before. Notice the naked ears.
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
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
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.
Brian, Christie, and Sadie
Wednesday, December 8, 2010
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
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
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
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
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.
Sunday, November 21, 2010
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
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
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.
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.
You can donate by clicking here.
Saturday, November 13, 2010
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.
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
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
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.