Sadie's 12 month checkup

We saw Dr. Wendy yesterday. Sadie had a good trip to the dr. No car screaming at all...and then she got fussy about when we walked through the door of the building. But it was nothing a little nursing couldn't cure. I love when you're 10 minutes early for your appointment so you think you have a little time to sit down and nurse your baby in the lobby, then they call you back early. But when you're late...then they make you wait. So backwards!

Sadie got weighed and measured and then we went over what medications she takes and how much she gets blah blah blah. When we finally saw Dr. Wendy, it didn't surprise me the first thing she said, "do you believe her weight? Do we need to reweigh her?" Nope. She's skinny.

Sadie barely weighs 18 pounds. And she's been at that weight for about 4 months. 4 months ago it was fine...but everytime we've come back to see the dr. she drops on the charts for weight. At her 9 month appt she went from the 50% to the 25%. Now she's at 0%. The funny thing is, she's so tall she's going up in percentiles in length! I think she's also fighting her genetics. Brian was a skinny baby, and a skinny child, now he's a skinny adult! Sadie is built a lot like her daddy.

At 9 months, we talked about getting speech/feeding therapy involved...which of course didn't start until this week. Now we're talking about getting GI involved. Dr. Wendy says, "only because they have nutrition specialists in that department." There is no talk of a G-tube...yet.

For now we need to beef Sadie up. Wendy wants to see her again in a month to reweigh her. We have 4 weeks to pack pounds (ounces?) on Sadie. We want that weight to increase so that we don't have to go see another dr. So, we're adding oil to Sadie's food. Olive oil, coconut oil, flax oil...did you know these are all about 130 calories per Tablespoon?! That more than doubles a serving of Sadie's food at a meal. She should be getting close to 800 calories a day (according to the internet) and she's probably getting barely half that. It's hard because we can't just sit Sadie in a high chair and give her a pile of cheerios to feed herself. Eating for Sadie is work. And she can do it, but it's work. We're also trying to feed her snacks. She's getting better at eating finger foods (although it's more about mommy and daddy's fingers than Sadie's) and she got these freeze dried yogurt bite things for her birthday that she really likes. She sucks on them and they melt and stick to the roof of her mouth and she works on it and works on it. They keep her from being bored, they get her more calories, and they make her practice using her tongue and facial muscles. So, those are really good too.

Beyond the weight thing there weren't really any concerns at the checkup. Sadie is going to get another vaccine, but I requested that we wait until 15 months as she was a little sick this week. We've all been a little sick this week. We looked at her teeth and talked about how we can't believe it's been a year. We discussed equipment and letters of referal from PT. I told her that now that we have long term care we have respite and everything is free again. And then we said goodbye.

It was a pretty good visit...now it's time to go feed my baby again.

Blessings in Bunches

First of all, I'd like to announce that Sadie slept in her own bed in her own room last night for the first time ever all by herself!! 12 hours she spent in there without a peep...we were worried she was dead. Nope, just being a big girl!

It was a little weird at first and I had a hard time falling asleep knowing that she was on the complete other side of the house. But I have a cold and eventually I stopped listening as hard as I could to the baby monitor and just fell asleep.

I was thinking about it and I think the last time Brian and I slept without her in the room was the night we decided to unplug her and let her go. That was over a year ago!! It feels good to wake up after a night of not being concerned about tossing and turning and having a baby glued to the side of me. I'm a whole new me!

Second, Sadie had her first feeding therapy yesterday afternoon. Her goal is to just make Sadie more aware of her lips by stimulating them and causing her to realize they exist. This will hopefully lead to more babbling, sucking food off the spoon better, and eventually biting and chewing bigger pieces of food. So, she gave us this little rubber nubby thing that we're supposed to stick in Sadie's mouth and rub around her gums before she eats, as well as rub along her lips. Then she had this tiny little vibrator that she put on the outside of Sadie's mouth to stimulate awareness. As soon as our therapist left, I fed Sadie and I was amazed at how well she ate! Maybe she was starving. Or maybe all that stimulation made her want to eat. I don't know, but I did it again this morning and I had the same results.

She is also doing really well with little toddler food meltaway bites. The ones we have now are freeze-dried strawberry yogurt bites and Sadie just ate like 10 or 12 of them in one sitting, which is a lot for her! We need to get some more calories in her, so hopefully this new skill will open up the possibilities for us to do that.

Finally, we went to see the pediatrician today for Sadie's 12 month well baby checkup (I'll blog about that separately) and we had a nice quiet car trip both ways!! Plus she was a happy baby while we were there!! I'm really enjoying this big girl!

Shifting Paradigms

Yesterday I went to WalMart. Iused to love WalMart...when I lived in Eugene. But there's something about a big city that causes all the riff raff to come out of the wood-work. And they all seem to shop at WalMart. Come on, you've seen those websites of the ridiculous pictures of people taken with camera phones at WalMart. I don't go to WalMart anymore...except that the closest branch of our bank is in the WalMart that is about 2 miles away from our house. So yesterday I went to WalMart.



I don't know if it had to do with the emotions of the week and Sadie's birthday and sad memories, but I started looking at those snotty grungy low-income kids all running around their mom in the motorized wheelchair and I started grieving again for what my child isn't. The thoughts of "it's not fair" started creeping back in. But then it hit me: what in the world would that woman, who can't even walk well enough to get herself around WalMart, do with a baby like Sadie?! And all of the sudden my perspective changed. I realized that it's not about how I got the raw end of the deal, but about what Sadie got out of it.



Sadie got two parents who love her and accept her the way she is. We have the energy to deal with her irritability and her insomnia. We have the means to support ourselves and all of Sadie's needs. We have the intelligence to ask the right questions and find the right people. And we have the support of family and friends who love her even without ever meeting her (or us). All of that isn't fair either...but not in the same way.



So yeah, I still struggle a little with jealousy that my kid can't really use her hands, doesn't self feed, and is nowhere near moving independently from one place to another. But I am thankful that God gave Sadie to us and not someone who couldn't handle her or maybe wouldn't love her as much. And probably for the first time in however many years I've lived in Phoenix, I walked away from WalMart feeling satisfied with my experience there

so hard to say goodbye...

I know it's good to focus on all the good things in life, but I think it's also important to remember the hard times so you can see how far you've actually come. Today marks the one year anniversary of the day Brian and I made the hardest decision we've ever made. It was the lowest point in my life.

Last night as I was laying in bed, I thought about how a year ago this night we were making a decision to unplug Sadie and let her die. What we didn't expect when we got to the hospital the next day was that we 'd have to make that decision so soon.

One year ago today we prepared ourselves to say goodbye to our brand new tiny baby. We unplugged her breathing tube and waited for her to stop breathing, but she never did. So, we passed her around and all our friends and family, the ones we love the most were there and got to hold her for what we thought would be the only time.

We are so lucky to have so many good friends. And we are so lucky that we still have our little girl. And today she still breathes just fine on her own!

On this day in history...

One year ago this morning was the first time I was allowed to hold my brand new baby girl. She was 4 days old and had just completed 72 hours of brain cooling. She had a breathing tube in her mouth, an EEG wrapped around her head, and all sorts of wires and cords attached to her body.

I know that she knew it was me that had her, and I'd like to think that knowing that her mama was there loving her made her fight to hang on. She was so little and so helpless and I loved her so much more than I ever imagined. That day I felt more sadness and more excitement than I ever had in my life

Little did I know that the next 24 hours would be the hardest day of my life.

The Sound Screen

Back in August when we had to spend some nights in the hospital, we found out that white noise is straight from heaven. I quickly downloaded an app on my phone and we played white noise all night every night...until my battery blew up. This week we bought something called the Sound Screen.



Here is a video of how it works.



The thing we liked about this noise machine is that 1. it plugs in, which is nice since we play it for 12 hours at a time and that burns through a lot of batteries. And 2. it's not electronic, just air forced through some holes.



It works great! Sadie has taken 2 naps in her bed this week and went to sleep in there tonight (with some help, of course). The goal is to use it to transition Sadie to her own room.



Wish us luck!

Guilt over a Homebirth?

Ever since my interview on the radio this last week, I've been thinking a lot about guilt. We discussed guilt a little bit as when something like this happens to your family, guilt is probably a common emotion. But I've never felt guilty.

I think when I tell people about what happened to Sadie at birth, they automatically assume it was because we had a homebirth. But, I've thought a lot about that and I really think having a homebirth is what saved Sadie's life. For one, we had awesome midwives with a lot of experience and they did the right things right away. But also, there wasn't a rush through my labor, there was no intervention, and no emergency C-section. Because we had a homebirth I wasn't kept in the hospital for a mandatory 24 or 36 or 48 hours. I slept in my own bed that night and I went to see my baby the next morning before it was even light outside. My midwife even spent the night on my couch to make sure I could go to the bathroom in the morning...and she made me breakfast!!

Sometimes I wish we hadn't had a homebirth just because now my friends are scared to death of having babies at home. I hate having people ask me if things would have gone differently if we'd been in a hospital. No. Actually we had several people in the NICU tell us that the homebirth was not a factor in Sadie's situation. She was sick, and she had been for probably a couple of weeks. No doctor, no ultrasound, no extra intervention during labor could have seen that...and just like my midwives, they wouldn't have even looked for it since everything was healthy and going perfectly.

When I look back on my pregnancy, with 20/20 hindsight vision, I can now see the warning signs that we should have followed up on. But it was my first pregnancy and everything was healthy and going well, so we had no reason to be alarmed. But I don't feel guilty about that, I didn't know any better.

I understand guilt. I understand feeling like something like this is your fault. and I understand thinking: if I had only done XYZ differently. But I did everything right. So I have no reason to feel guilty.

Special Guest Writers - EVERYBODY!

Brian's uncle, David Beck, has been an amazing outstretched hand to the community in which he lives, and the world at large, in spreading Sadie's story and asking for prayer. He emailed me this this morning and it touched my heart to read all the comments he's compiled from FaceBook from all the people who care so much about Sadie and about our family - mostly people I have never met! This is amazing to read.

When the poop hit the fan in Arizona, I found that I could put a pile of people onto Sadie thru FB, it was so special, the response so compeling, and heart felt. I compiled this special event, it wasnt all of them, didnt have enough space for all the wonderful people invested in Sadie Beck, but they know who they are. :)

No one here knows Sadie, or hardly anyone here have ever met Brian or Christie Beck but the out pouring of concern, faith, hope, and love have been overwhelming for me. You are simply people who I know daily, from high school, from business, from my childhood, from association with my children, from Facebook, and yes some of you do not know me at all, we've never met, you are a friend of a friend, your a friend on Farm Town and Farmville. Your interest and desire to be a part of this tragic drama speaks of your character, your love, your faith, your friendship. Below are a few of the comments posted that have spoken to me as this ordeal unfolded and here your hearts unfolded....

Susan Lavoie: Oh, the power in the Name above every name ~ JESUS! He is the Resurrection and the Life!

Faye Coates: I DARE anybody to say God doesn't answer prayer!! What more proof would anyone need???

Sheila Cheek Ruggles: Angels come big and small. They both have been captured in this photo. My heart has been touched wonderfully.

Cyndi Wallace Bailey: this picture brought tears to my eyes!!! so good to see this little one progressing so well! i just love these updates and continually thank God for what he is doing in this situation :-)

Leslie Caputo Sanford: Your updates bring joy to my heart. We love you Sadie!

Marilue Tate: What an amazing story!!!

Janet Gregory Moore: Praise God from whom all blessings flow! She's such a strong baby : )


Kathryn Glover Hartmann: This should be titled "A Picture Speaks a Thousand Words". Miss Sadie is absolutely adorable and looks like she is getting stronger by the day. God bless her.

Pam Chaffer Beck: Who saiys miracles don't exist anymore? My granddaughter is proving that there is. Praise God!

Kathryn Glover Hartmann: God has saved her for a purpose...so happy that this little "miracle" is defying medical logic!

Ivy Munsey Shelton: Miracles do happen! I think we all experienced one right here with Little Miss Sadie. God is great! :o)

Carolyn Jean Sullivan Payne: Thank God for this miracle.Way to go Sadie!

Leslie Caputo Sanford: This is wonderful news and brings me to tears of happiness! That's "our" Sadie... bless the little girl!

Thom Fogarty: Loving like there is no tomorrow is a mantra we couid all do better to live by. SHEER BEAUTY. Thanks BECK FAMILY.

Carolyn Jean Sullivan Payne: Sadie is beautiful!

Judy LaPorte: What a darling little girl!! What cheeks...I'd like to kiss them!!

Cyndi Wallace Bailey: so glad mom and dad are able to have baby sadie at home with them this is such precious time and i am sure is a comfort to them all. i know sadie is feeling so warm and loved! still praying for a miracle. thanks for the updates this baby and her family has been on my mind and heart every day.

Sharla Harris Cleveland: Like everyone has said, Thanks for keeping us updated.....GOD is SO AWESOME that HE is sharing this beautiful little angel not with just her family but with strangers....Your family is very Blessed and your blessing the rest of us with all these updates. Thank you & Praise GOD!

Merrie Cousins: Simply amazing...thanks for sharing such special moments...may there be many, many more!

Sharla Harris Cleveland: Like everyone has said, Thanks for keeping us updated.....GOD is SO AWESOME that HE is sharing this beautiful little angel not with just her family but with strangers....Your family is very Blessed and your blessing the rest of us with all these updates. Thank you & Praise GOD!

Diane Frisch: I am thankful for this venue of communication, and that we all can share in the joys, strengths and love of others. Near and far, we all feel the same emotions. I just wish I could be there to meet Chritie and baby Sadie. And to hold Grandma Pam when she needs that extra hug. You all are very brave for sharing your story. I am thankful. Where's the LOVE button. I am so happy you two can have her there with you and all your love. Hugs and prayers all over!!

Felecia Smith: Sounds normal and lovely

Julie Morris: She is so beautiful, still praying! Love is the greatest of all.

Rebecca Barrows:Matthew 18:14 Even so it is not the will of your Father which is in heaven, that one of these little ones should perish. Claim this promise!

Sarah Forbush Southworth: My love to the entire family. One never knows why things happen like they sometimes do. However even a short time with a child brings us the gift of the depth of our love for them; and for her, a loving parent's touch and warmth and voice and love... Be strong...

Ivy Munsey Shelton: I believe in miracles and will contimue to pray for one for Little Miss Sadie and her family.

Kathryn Glover Hartmann: Prayers for precious Sadie! She's a tough little fighter.

Faye Coates Sometimes angels just have to be tough!! Go Sadie !!!

Carolyn Jean Sullivan Payne: Praying really hard for little Sadie and her family!

Cyndi Wallace Bailey: so glad mom and dad are able to have baby sadie at home with them this is such precious time and i am sure is a comfort to them all. i know sadie is feeling so warm and loved! still praying for a miracle. thanks for the updates this baby and her family has been on my mind and heart every day.


Faye Coates: Prayers offered regularly for this little one. God has a plan for her.......and for all involved.....his witness will be known in all circumstances. :-)

Merrie Cousins: Any more good news? A miracle happening! We are cheering for you and your family...especially that adorable little girl!

Rebecca Susan Bailey Lavoie: Shalom (nothing missing, nothing broken)

Cyndi Wallace Bailey: what a beautiful little girl!!! hang in there sadie

Julie Morris: STILL PRAYING SHE HAS TOUCHED ME DEEPLY AND I BEG FOR HER HEALTH AND STRENGTH. He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
Thanks and Praise the LORD, thank you for your blessings

Rebecca Susan Bailey Lavoie: Amen Julie!!! I still believe in miracles, David! Faith is the substance of things hoped for (Heb 11:1)

Ivy Munsey Shelton: I have been thinking about Sadie and saying little prayers for her all day long. The first thing I did was check on her when I got home. This is great news!

Rebecca Susan Bailey Lavoie: Praise Jesus! She will live and declare the mighty works of the Lord! Psalms 118:17

Felecia Smith: Have been praying for Sadie all day. Will continue to pray for her and her parents. God is GREAT!!

Tammy Baldwin: Pray for Baby Sadie...Keep fighting......alot of people love you, who dont even know you..God keep her in your loving arms and help her heal......

Felecia Smith: Hallelujah

Leslie Caputo Sanford: Good news that they are spending quality, loving time with her. Prayers keep coming!

Ivy Munsey Shelton: I believe in miracles and will contimue to pray for one for Little Miss Sadie and her family.

Larry Snellings: Praying for sadie's healing right now!

Rebecca Barrows: Been praying for much of this afternoon. Will def. continue. Such beautiful baby pics. Made me cry my eyes out and don't even know them.

Robin Bowie Brown: My prayers are with you and the family-God has a bigger and better plan for your little one. Please keep the faith.

Julie Morris: I am constantly praying she is on my mind and tears have been going What are we without hope, miracles can happen and if anyone can prove doctors wrong ITS GOD

Tammy Baldwin: My god wrap his arms around them and help them through this.... lots of prayers and tears..we send our love to them all..god be with the Beck family..

Thom Fogarty: I have been moved to tears repeatedly over the last few hours since this post, having just spent the afternoon with dear friends and their 3 and 1 year olds. I have no idea how you are all holding up, but please know that there are many out here, in the seeming darkness, who care and feel for you deeply in this time of great change and learning. For we will all learn something about ourselves........for the next time we are brought to trial.

Janet Gregory Moore: God bless - praying for a miracle or, if that's not God's plan, a peaceful end to a too short life

Merrie Cousins: What a welcome relief...still offering my prayers!! My best to all!!

Patricia Hoffman: My prayers are with you and the family. What a precious precious little angel. God bless

Sheila Cheek Ruggles: Sometimes God has his hand in situations for reasons that are not obvious to the rest of us. Is this situation one to bring many people together to become one in prayer? Is it one for all of us to realize the problems we have are minute in comparison to Christie and her family's situation? I like to think that things like this happen so we can ... See Morekeep our eyes and hearts wide open to hopefully understand, be touched by the experience,grow from it and support one another. To take time to care about one another. Bless you all.

Felecia Smith: She is a beautiful baby. I'm at a loss for words right now. My prayers are with the family. May God be gentle in this time of sorrow.

Leslie Caputo Sanford :You know my prayers are with you all.. I looked at the photos you posted and she really is a beautiful little girl.

Julie Morris: Amen! Keep Praying Miracles do happen and God's will-will be done... lean not on our own understanding but on GOD. Don't be crushed David, I know I don't know her or the family but I can't get her off my mind and I know that the HOLY SPIRIT has put her there for a reason...

Marilue Tate :So so sorry for all your pain! May God Bless!

Thom Fogarty: MY LOVE TO YOU ALL.

Diane Frisch: May God hold you all in his loving embrace. My prayers are with you always~

Felecia Smith: Dear Lord, wrap your loving and protecting arms around this family. Give them all the support and faith that they need. Touch Sadie and make her whole as you would have it. Amen.

Rebecca Susan Bailey Lavoie: Sadie ~ your name means princess and describes you perfectly. You are beautiful and your life is so precious, no matter the length of days. My heart and prayers are with your family who love you so much! My eyes are filling with tears and my heart is full of compassion ...remembering a little baby I walked this path with almost 27 yrs ago.
I still believe in mirales♥

Christie Beck: Everybody kiss your babies today and thank God that you have them

Lynn White: Mother Teresa always said that she knew God would never give her a burden she could not bear - but she often wished God did not have so much faith in her. God will get you through this.

Rebecca Barrows: So sorry to hear. Sending love and prayers.

Tammy Baldwin: just wanted to check in to see how she was doing?????

Victor Pierson :So sorry to hear, David.

Diane Frisch: May God hold you all in his loving embrace. My prayers are with you always~

Kathryn Glover Hartmann: Praying for Sadie...

Martha Ann Scott Ross :prayers continue~

John Kendall Pepper Jr.: Been following a harrowing story on Facebook. The niece of a friend of a friend (and I only know the friend) just gave birth to a baby who had aspirated meconium and now has severe brain damage. The baby is unconscious and has been on life support.
Normally, babies don't have their first bowel movement until after they're born. But a certain small percentage excrete the meconium in the womb, though usually it doesn't lead to serious complications. The meconium is very thick and sticky, and if enough of it is inhaled by the baby in the womb, it can cut off the oxygen supply to the baby's brain. That appears to have happened here.
In this case, the mother had a staph infection in her umbilical cord (though she didn't have the infection herself). From what I've read on the Internet, the infection could have put the baby in distress and triggered the premature excretion of the meconium.
I poured over the photos posted by the mother on the Internet and read her narrative. After the initial enthusiasm over the birth, the mother now writes that, according to an MRI, the baby will never be able to walk and perhaps not even know who her parents are. What a terribly sad prognosis.
My heart goes out to this family of a friend of a friend. I've cried a lot over this.

Pat Ellington: I am so sorry for this sadness in your family. I have been praying for God's will in their lives. There is such sadness in any loss, but I believe it is extra hard when it is a child. I pray now for comfort and healing and peace for each of you.

Sarah Forbush Southworth: Will do! GO Sadie!

Patricia Beck: I am praying that whatever the turn out that they are comforted and having her with them even for the time they have is a blessing. It is so hard I just have to keep saying God is in control and we have to trust him. FAITH

these are just few, not excluding anyone, there are just so many, which speaks volumes of you....love to you all!!

Sadie Turns 1!!

Dear Sadie,

Today you're one. And I love you so much. I remember this day a year ago. I remember being so excited that labor was beginning. I remember Daddy being by my side and doing his best to keep me comfortable. We were so excited to meet you. We had no idea you were sick.

The past year has taught me a lot about babies, about you specifically, and about our family. You are so lucky to have a Mommy and Daddy who love you so much because you are not easy to live with! But, you're cute and when you're asleep all cuddled in my arms, it makes all the hard work worth it.

When we brought you home, we had no idea how long we'd get to keep you. But still, a year later, you continue to amaze us with what you are able to do. We didn't even know if you could breathe without assistance, but daily we get to enjoy your bright eyes, your smile, and your strong will that doesn't give up easily. We thought you'd never be able to suck or swallow, but you and I have a special bond through nursing, something I am so thankful we didn't miss out on, and even at one year old, you love to fall asleep while nursing with Mommy.

Sadie, this year we've had a lot of triumphs. We saw you smile for the first time, we've watched you get stronger at lifting your head up, we've see your first teeth pop through (finally, after some LOOOONG months of waiting!). We've rejoiced as the doctors declared that you are seizure free. We've felt relief when you started sleeping through the night. We are still excited each time you eat a meal of solid food puree, each time you suck on the sippy cup, and each time you fall asleep by yourself with the pacifier. It has been amazing watching you show us what you are able to do.

We've also had a lot of our questions answered this year. We got a diagnosis of cerebral palsy, which helped us know what we're dealing with and how to move forward and help you. We learned of your sensory processing issues and began a relationship with the bouncy chair. We defined your visual impairment and got help in how to work with your vision so that it continues to improve. We know how to help you calm down when you're screaming your head off. We know how to make you happy when you're bored. And we are getting better at helping you sleep when you are tired.

I love you so much. I love your skinny little legs that poke out your diaper. I love your perfect little belly button. I love your squishy arms and your long fingers that like to hold on while you're nursing. I love your red, curly hair that sticks out all over the place when you get out of the tub. I love your crooked nose from the breathing tube at the hospital. I love your kissable little lips that part into a perfect smile when you realize you can see something. I love your big blue eyes with your eyelashes that go on for miles it seems. I love to squeeze and pinch your cheekys, both sets. And I love your baby head.

Sadie, I can't wait to see what the next year brings, and the many after that. What kinds of things will you amaze us with this year? What kinds of things will you be able to do when you're 2? When will you stop screaming in the car?! How many more hearts will you touch this year? What kinds od opportunities will God provide to share our story and the miracle that you are?

I can't wait to see what the future holds. All good things. I can only imagine.

Love, Mommy

My first Half Marathon

I did it, I completed the Rock 'n Roll half marathon. I'm not gonna say I ran it, because I didn't, that is a whole different accomplishment. I'm just happy to finish. Why? Because that was the hardest thing I have ever done in my entire life!!

I only trained for just under 5 months, and, for that short amount of time, I think I did pretty well. I was comfortable going about 6 miles and had gone 8.5 once. My goal in the half marathon was to run to 10, then see how I feel. I made it half way.

I should have taken the immodium they offered me.

I was hungry, I was thirsty, everything hurt. And just when I didn't think I could go any further, I passed the 20K marker and knew I was less than a mile away. I knew I had to make it, and I knew I had to run across the finish line. Here's a video of me crossing the finish line.

Action Sports International

I tell ya what though, running with a group like I did was the way to go. I got coached (which if I didn't have Sadie I would have taken advantage of the group runs every weekend) and weekly encouragements in my email. There was also one of our coaches near the end who came out and walked with me to make sure I was okay and that I didn't need anything. I didn't have to pay for registration. I got to meet at the children's hospital and ride the shuttle to the race, which is a big deal because there were like 60 thousand or something runners! I got to wear a special shirt showing that I was part of a team (even though I only saw one other person from my team on the course). And at the end I got food, water and gatorade, I got a place to sit and relax, and I got a mini massage!

I cried when I finished, mostly out of pain (you can probably see the anguish on my face if you watch the video closely), but by dinner time I was only walking a little more slowly than normal, and the next day I was hardly sore. At first I thought I'd be crazy to try something like this again, but now I want to train to run the entire thing (since I have a year instead of just 5 measly months to train). I think I can do it. I learned a lot from this experience. Next year (or next time) I will:

1. Run with a buddy. I saw a lot of people who were ready to give up, but their spouse/friend/dad/etc encouraged them to keep going. I think that would really help me.

2. Bring a granola bar. I saw a lot of people munching on something as they ran. That's probably what I needed to keep me going.

3. Make sure I've RUN the whole distance at least one time before. I had no idea how long 13.1 miles actually is!!

4. Take immodium. It sounds silly, and a little bit gross, but I think my tummy would have felt better if I had.

5. Wear more dryfit or nylon. I had cotton underwear and pants on, and I was SWEATY!!

All in all it was a good experience and I'm glad I did it. Thank you everyone for supporting me with your donation. I hope more people donate next year, there were a lot of my friends who didn't give and that made me a little sad. I'm trying to get Sadie to be the poster child for the event next year. And I'm also trying to get Brian to run with me!

Our Second Radio Appearance

This morning I was on a radio show called Rivers of Faith, hosted by Donna Tyson, who is friends with Brian’s Uncle Dave. She has been following Dave’s Facebook re-posts of my updates on Sadie’s progress and development and has even visited our blog to get more information. She contacted me wanting me to share Sadie’s story to inspire and uplift other people who may be dealing with a brand new baby facing a hard diagnosis. I told her I’d love to talk about Sadie, after all, she is the biggest blessing in my life and I want to share our story with the world. This is a good start! Next stop, The Today Show?

If you would like to listen, you can find the archives here Rivers of Faith Archives

Update on Movement Therapy

Sadie has been going to Movement Therapy every week through the month of December, and starting back up now that we're back from our holiday break. We really like Michelle.

Today Michelle's partner, Diane, was there also. Diane is a vision specialist and worked for The Foundation for Blind Children for many years. Diane has really noticed a change (for the better) in Sadie's vision and works a lot with her when she's there. However, today, Sadie was tired, I suspect her mouth hurt, and all this resulted in BIG grumpy pants!

We stood Sadie up for a while and worked with her vertical instead of horizontal, that seemed to make her happy for a little while. She even played with one of Michelle's fun toys that if you push buttons they make noise, play songs, and light up (I really want to get Sadie something like this).


Then we took a nap break. When Sadie woke up (after about 15 minutes) I showed Diane and Michelle our trick.

When Sadie first wakes up she will lay on her tummy and lift her head, turn it from side to side, look at stuff, even push with her arms, and sometimes roll herself onto her back when she's done. But we can ONLY do this when she first wakes up, so often this is what I do with her when I am making her some food (because she usually eats as soon as she wakes up too!). Both women were really impressed with this.

While we were there I asked if it's more beneficial for Sadie to come weekly like we have been, or to do an "intensive" session every couple of months. An intensive is like 2 appts a day for 4 or 5 days in a row. Michelle said now that she's seen both with another client, she sees MUCH more improvement in a shorter amount of time with he intensive schedule. So, we won't see Michelle until President's Day weekend. We will see her at 9am and 3pm Friday-Monday.

If you are interested in knowing more about Michelle and her business, you can visit her website here. Movement Lesson

UPDATE THE NEXT DAY: Last night I had a dream that Sadie started pushing herself into crawling position after seeing Michelle for an intensive. Maybe this dream is just an indication of what's in my heart.

TEEEEETH!!

Today Sadie needed to suck. This is not unusual. It's actually pretty funny because she'll lose her latch when nursing, but she won't stop sucking. She will continue to suck on nothing for another 20-30 seconds. Normally I will just laugh at her and wait for her to finish, maybe pull on her cheek a little, but today I didn't have the patience (thanks to a couple of students who used it up), so I just stuck my finger in her mouth. And then I felt it...

A tooth.

Immediately I texted and emailed everyone I know. I posted on facebook, and I started forming this blog post in my mind. We've only been waiting for these teeth for 8 months!! It's strange though, I always expected the left one to come first, but that right one snuck up on me and broke the surface before I even realized it was there! I guess it's like a watched pot...a watched tooth doesn't cut through.

Now that it's after 8:00pm, and she is screaming her head off and won't sleep, it's not so exciting anymore. My prediction is that the left one will break the surface by the close of business tomorrow. And Brian is leaving town at 7:00 in the morning...overnight. And I see a big bowl of crazy in my future. Tonight we've administered orajel and Tylenol and I'm just praying they kick in SOON!!

And then I'm sure by the time my best friend gets in to town, Brian comes home, and my mom arrives all the drama will be over. At least they'll get to enjoy all the cuteness that comes with those two bottom teeth and a mouth full of gums!

Also, for those of you keeping track of the poop situation, we finally got things moving down there. It wasn't pretty when it started coming out, it was like every other diaper was a blowout! But, we got her cleaned out and now she's more regular. And even though we don't like changing poopy diapers, we're REEEAAAALLLY happy that she's going!

Zahira

Sadie spent her first day with Zahira today, our new respite care provider. She is great. I can tell she loves Sadie. She bounced her for a LONG time, she was able to feed her (usually I'm the only one who is successful at this), she took her for a long walk, and she played with her and sang to her. She is great. We really lucked out getting somebody so amazing on the first try.


I just hope she'll stay with us for a long time.

Walking by Faith

On Fridays, Sadie and I go to the Foundation for Blind Children where they have an infant program. It's 2 hours, from 9-11. For the first hour they set up stations for the kids to experience different things with their hands, there's usually a station with a story, something sensory, etc. then they do music therapy all together in a circle. The second hour the parents get to break off and have a meeting by themselves. This is really why I go.

Sometimes in the parent meeting there are guest speakers, sometimes we learn something related to a vision impairment, sometimes we just talk. Today, we talked. As we went around the table and told about our children and their diagnosis, we were supposed to share something we like about parent meetings and something we'd like to see more of (or less of). It was mentioned many times that we'd like to have some more time to just talk to each other. The thing about Friday mornings is that every minute is used for something. So, if want to just talk to Lara about how we found a respite person, I'd have to stand outside at the end, while both of us hold our children (mine usually screaming) and have the conversation there. It's not ideal.

Once this was brought up (by me, of course), lots of ideas were thrown out: having a shorter music time and a longer meeting, going until 11:15, starting a parent resource group on Facebook, or having a potluck day on a Saturday or something where we can come and just hang out and let our kids play. This last idea is what I want to talk about.



I love coming to The Foundation for Blind Children because there is so much diversity among children. Some only have a visual impairment and are otherwise developing normally, others are like Sadie and have multiple things going on, which usually stem from some kind of birth trauma. Going there was the first time I had really had the opportunity to be around other children with CP, to see how they acted, what their development was like, and to talk to their parents. I came looking for hope, and it's what I find every week when I go. Because Sadie is one of the youngest children who attend, I have the advantage of hearing other parents say, "if we had started when he/she was Sadie's age..." I can see Maddie at 20 months using her hands more and rolling, I can see Ceagan, at 7 months sitting unassisted, and I can see Camilla at 21 months participating in music therapy. And these give me hope for Sadie. But I also see Abbe's mom smiling and playing with her during centers. And I hear Aaliyah's mom talk aout all the new therapy equipment they just got that they're excited to try. I see the joy and love Camilla's mom showers onto everybody because Camilla is her SECOND kid who's been through the program. And these moms give me hope for myself.

Once it was brought up that we could all get together outside of Friday mornings and let our kids play while we talk, one mom spoke up with something I never expected to hear. She said she'd love to do something like this, but sometimes she feels bad that her child's only impairment is visual. She made it clear that nobody has ever made her feel this way, just sometimes she looks at her otherwise perfectly healthy, normal child and is sad for those of us dealing with multiple diagnoses. And after a number of other moms spoke about this and gave their perspectives, I put in my two cents worth.

I told them that I've had my share of jealousy, especially when I go to the grocery store, but that I have never felt jealous of anybody at Friday program. I told them that I love hearing about the things their children are doing or the great things the doctor told them, and it doesn't feel like they're rubbing anything in, because someday I hope it's me talking about those same great things. When I hear it, it gives me hope because I think that if your child can do it, so can mine! I told them that despite your childs impairment, we're all in the same "club" and we've all got our issues to deal with whether it's just a visual impairment or it's multiple life threatening diagnoses. There was a new mom and baby this morning and I spent much of music watching them (because Sadie and I were in the rocking chair napping instead of singing) and I was amazed at how much fun she was having and how well she was doing, and cute she is! And after learning her story that she is a surviving twin, born at 24 weeks with severe brain hemorrhaging, I was even more impressed. But she had a feeding tube, so I know it isn't all rainbows and unicorns in their lives either, so I'm not jealous...not even one bit.

Here's what it comes down to: None of us know what the future holds for our children whether they are perfectly normal and healthy or struggle with severe disabilities. It's just that those of us who have children with special needs might wear our worry more on the outside where everyone else can see it. As parents, we have to walk each day by faith, knowing that God has our children in His hands. And we have to know that no matter what our child may or may not be, it's still our responsibility to be the best parents we can. God gave us to our children because He knew we'd be the perfect parents for them. I also think that whatever the future holds, it's important to remember the good in our own child and instead of focusing on the car screaming and the constant bouncing. So I think about that Sadie can suck on a pacifier, she can sleep all night, and she has a beautiful smile that can light up a room. And that's really why I love the Friday program, because I see ALL of us parents doing exactly that.

Today Sadie was a SuperModel

Today, Sadie and I went to PCH to take some publicity pictures. They are re-doing a lot of their marketing (I'm assuming because of the new building they just built), so they've spent the last couple of weeks taking pictures of kids with doctors and in different places in the hospital. We were originally supposed to be taking pictures in the cardio department with a doctor there, but, like with anything, plans changed.

So instead, we just stood there and looked pretty while they snapped away.

Sadie DESPERATELY needed a nap when we got there, and she fell asleep immediately. I actually had to wake her up to take pictures. And in typical Sadie fashion, she was happy and smiley as soon as she woke up.

Unfortunately, we probably won't get to see these pictures until the spring. But, I will make sure I show them to everyone! Or who knows, if you live in Phoenix, maybe you'll see us on a billboard or the side of a bus telling how great PCH is!

Respite, take one

We had our first interview for a respite person today. It's kind of a big deal because while I am really eager to get this going and have help, I also want the right person to be in my house and alone with my child. I'm sure you understand.

I had a list of questions prepared. Things like, if Sadie screamed for hours and hours and you couldn't get her to stop, what would you do? Or, What is your experience with children? With special needs children? I wanted to know her feelings on cloth diapers, and if she was okay helping with chores, is she allergic to cats? And can she drive a stck shift?...because my car is a stick and that's the one with the baby seat. I also wanted to make sure she is physically able to bounce Sadie on the ball, take her for walks in the stroller, and play with her on the floor.

At 1:30, Zahira (pronounced "Cida") rang my doorbell. She wasn't what I was expecting, but ended up being so much more!

We talked for a little bit, I asked her some questions, she seemed to have all the right answers, I learned that she's 20, and going to school to be a behavioral health counselor. She's worked since she was 16 taking care of disabled adults and children. Right now she mainly works with an after school daycare for boys with behavioral special needs (she said many of them are autistic).

Then I handed her Sadie and that's when the magic started to happen. It was love at first sight...for both of them. Soon Zahira was on the ball, and Sadie was asleep in her arms, with the pacifier. Sadie loved every second of it, and when she woke up, she thanked Zahira with one of those magical smiles.

The best thing about Zahira is that she was willing to do anything. She said she doesn't know how to drive a stick, but was willing to learn. She had no experience with cloth diapers, but wanted to learn to sew so she could help me make them (and to know how to sew). She said she likes to clean and would definitely help with housework. And she was very flexible with her schedule, she even said she would come over on the weekend so Brian and I could go on a date!

Once Sadie was awake, Zahira changed her diaper, then they played on the floor together with Sadie's toys. She sang to her and kissed her and loved on her a lot. She was like an instant member of the family. She told me she has 7 sisters (no boys!!) and 16 nieces and nephews, so she really likes babies...and it was obvious.

I have another person to interview tomorrow, but I think I already know I want Zahira.

The thing about the paci is...

I love that Sadie will now take a pacifier. It's made so many things so much easier. But the thing about the paci is that she's not real good at it. She'll suck on it, but often you have to hold it in her mouth or she'll inevitably spit it out. This isn't a big deal if she's sound asleep...but if she's not she'll wake up immediately when she realizes there's nothing in her mouth to suck on.

Usually by this age, actually way before this age, babies have enough dexterity that they can put the paci back in their mouth. That would be nice, I could lay her down in her bed, she could grab the paci and stick it in her mouth and suck herself to sleep...maybe someday, but not yet.

So, am I a bad mom that I want to rig up some device to keep the paci in her mouth? A friend told me that when she would swaddle her babies when they were real little, she would just wrap the swaddler thing over their mouth to hold the paci in. So, I'm not crazy...or the first mom to consider something like this. I got the idea the other night when I laid Sadie on the couch and kind of angled her downward, putting a pillow up against the paci to keep it in her mouth, she fell right asleep.

I was thinking some kind of elastic that's not real tight, so that it can fall out if her mouth is agape with sleep, but tight enough to keep it in there so she'll stay asleep. This would eliminate the need for me to sleep with one hand against her face at night so she'll keep sucking. Is this dangerous? Should I just tough it out? I am desperate. Any other ideas?

UPDATE: I did it, and it sorta works...at night. It didn't work too well at nap time once she realized I wasn't there she woke up. But she did nap for 10-15 minutes! See?


We'll keep working on it!

A New Way to Bounce

We found a crack in the bouncy chair.
I'll let that settle in for a moment.

...

This means it's just a matter of time until we are at that crossroad again: do we buy another bouncy chair or search for an alternative? This one was supposed to be transitional, only a fall-back while we learn a new way to stimulate her vestibular. But she hates the swing we bought. I think it's going to have to be like learning to drive a stick shift...you're not gonna really do it until it's your only option.

However, tonight the bouncy chair wasn't doing it for her, actually nothing was. So, I sat on the big yoga ball with Sadie on my lap and bounced that way. Soon she calmed down and I was able to put the paci in her mouth and bounce her to sleep. I got this idea from my littlest brother, who successfully put Sadie back to sleep the other day while bouncing on the ball.

The goods of this: she'll have quite a while to grow out of it. Hopefully in a couple of years she'll be able to do it herself.

The bads of this: whoever is bouncing her can't really do anything else until she falls asleep.

Now I know what to ask when interviewing people for respite care: "How do you feel about strengthening your core while you're here?"

1-1-11

It's the beginning of a new year and Sadie started it out well! After a good night's sleep, Sadie spent much of the day eating, entertaining herself on the floor and napping. There was only a little crying, but it came with poop...how's that for a silver lining? She even managed to suck a half ounce or so of water out of the bottle! This is our big goal right now that we're working on daily. That she can do it at all is HUGE progress.

Because Sadie required so little maintenance (except that she still needs to be held when napping) I was able to make bagels, greek flat bread pitas, and some hummus to dip them in! I really enjoy my new mixer I got for Christmas...now I need to figure out who to give my bread maker to, since I no longer need it or use it! I'm starting to think having a disabled child has its blessings, since I can still lay Sadie down on the floor and she stays there, I am able to do more than I might if I spent all day chasing her around the house! As much as I want her to be mobile, I will appreciate the convenience her immobility is for now.

I also bought Sadie a birthday present today, it's probably the only thing she'll get from me (besides her party). It's a shirt with a 1 appliqued onto it. The idea is that she'll get one for her birthday every year to take a picture in...maybe next year I'll be organized enough to make it myself instead of spending $11! You should check out this lady's etsy shop, she has some fun stuff. Trisha B. Designs I love etsy. I also bought a birthday banner from her...something else I didn't get around to making! At least I'm organized enough to get these things at all in time for her first birthday! Some people manage to take pictures of their babies every month and write down every first in their baby books. I have a baby book, that's about it. And if I can get her picture taken every year in a shirt with her age on it, I'll consider it success!

Sadie's first New Year's Eve

Last night we participated in Midnight Madness. And madness was really what it was. I found this 3 mile race to run on New Years Eve months ago when I was looking for races to enter to prepare for my half marathon. I always planned on doing it. But then there was talk of Brian having to work on New Years...in Vegas. So, I called my friend and asked if she wanted to walk the course with me, after all, it said dogs and strollers welcome! We got it in our heads that we were going to do this. Then Brian's plans changed and he was going to be here after all...and we invited our husbands.

This was before we knew it was going to be the COLDEST week in Phoenix EVER!! Seriously, down to the 20s in the night, barely getting to 50 during the day. It's like we never left Oregon...except that it's dry. But if there were any kind of moisture, it would probably snow. How weird would that be?! Snow in Phoenix?! We majorly layered Sadie up: a onesie with socks up to her thighs, fleece footie jammies, pants and a sweatshirt, a fleece coat and mittens. She was still cold. One thing I learned though is that the weighted blanket actually makes you COLDER if it's cold outside, because it's filled with glass beads. So, those get cold and make the fabric cold. Good thing we brought a different blanket also!

Anyway, the race didn't start until 10:30. Sadie whined for about the first mile, then the screaming started. She was cold and tired (and she can't just fall asleep in her stroller...how I long for the day she is able to put herself to sleep!) and she wasn't having ANY of this 3 miles of walking business! So, we finally just ditched our friends and started running. Then I carried her for the last half mile or so.

When we finally reached the finish line, I held her tight, put the pacifier in her mouth, and she was out in seconds. Silly baby. On the way home, I sat in the back with her and held the pacifier in her mouth (she's still learning how to keep it in there herself), and she fell back asleep. It was nice that she was so tired because when we got home, we were all able to just go to bed...no hours of bouncing and nursing trying to get her to sleep. And I held her tight under the covers because the poor thing was SO COLD!