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!!