Day 3-14

ok i'm continuing the story and trying to shorten it.
Essentially day 3-14 was a new medical problem each day. After they found his brain damage the order went something like this-heart rate accelerated and wouldn't go down so he started medicine that he would take until he's 1 (this is called SVT), had 2 seizures (quite breathing during 1), has blood pooled in his left eye (we couldn't see this from the outside, blood from a brain bleed had drained down his optic nerve and filled his left eye), and a little blood in the right. This was spread out each day.
By day 7 or8 things took a turn for the better. Christian begin breathing without assisted oxygen, eating more and got rid of his feeding tube, and opening his eyes.
We went home on the day he was actually due Feb 11. After being home for 1 day we noticed he wasn't eating as much and was a little cold. So I called the nurse hotline around 11pm and they told me to take his temp which was 95 degrees. That was the nurses cue to say "Mrs. Russell I want you to remain calm and call 911. You need to go to the hospital". Ok -remain calm. So we wrapped him in a ton of blankets, the ambulance came to take us to the hospital.

There is so much more to write in between all of that but I'll save it for my book I'm going to write. We stayed in the ER from midnight to 8 am and then went to the pediatric floor. They finally found that he had hypothyroidism. So we stayed there for 4 days then were flown to St.Louis Children's Hospital for 4 day stay. Nothing new was found or done while in St. Louis so we finally came home to stay!

All we knew was that we would have to "wait and see" what Christian's life would be like. So that's what we do. It's hard to say for sure with brain injuries what a child will be able to do.
The sky's the limit!

What?????

There were so many titles that I could have used for this entry but I think the one I picked says it all. This is something that happened to me one day while registering for something. I will not say where this happened but just know that it did happen and I didn't make this up.

Christian was with me and it comes up that he had a stroke before he was born and then that he was blind.
Lady:"does he run in to the walls at home"?
Me: uhh no he can't crawl or walk yet.
Lady: well i know this isn't the same but. . .
I'm thinking then just stop your story if you started it with "iknow this isn't the same. .
Lady: when i was little i had a cat and it was blind and it would run around the house and sometimes run in to walls. But it didn't hurt itself.
Me in my head: she's really telling me about her blind cat. wow. so this is what they mean about strangers saying things that they shouldn't say. and your right your blind cat is not the same as my son.
Me(out loud): ohh. hmm

Note to all people reading this-don't compare your animals to special needs children. She did not offend me at all but it would probably offend some parents. Actually I was thinking "i've got to blog this one".

Halloween

Super Christian!

I wish I could fly!

Christian was superman for halloween. I'm glad the cape hid the fact that his costume wouldn't button in the back!

Article

Hey everyone there is a lovely article in the christian county headliner about the Kansas City treatment that Christian is having done and another family that's already gone and is there again.
http://www.ccheadliner.com

Being a mom is..

Being a mom is the toughest job i've ever loved!

p.s. that must be why it doesn't bother me to not think twice about catching vomit in my hands.

Story of Christian Day 1,2

Continued Story of Christian
The first 2 or 3 days of Christian's life were a little blurry because of the fact that I was in PICU (ICU for pregnant or just had a baby ladies) because of my preeclampsia. I could not have visitors, watch TV, get excited, be exposed to light, etc due to blood pressure. I did get to hold Christian day 1 and 2 (they actually wheeled my entire bed in to the NICU) and then I got a fever day 3 and 4 and couldn't go in to the NICU. It was heartbreaking to watch my son thru a glass window in the hallway. But looking back I do believe God was just making me heal so that I could care for him fully in the days to come.
So back to Christian-- day 1 they found that he had Ebstein's Anamoly(heart defect that never goes away) and a murmur. No surgery would be required at this time. The cardiologist was sitting on the edge of my bed telling us all of this and as he would talk the bed would bounce a little -thus causing a woman who just had a c-section to have extreme pain. I just kept thinking "get off the bed, please get off the bed". He's a wonderful doctor though!!! The next day I will never forget and it seems like it was just yesterday. One of the neonatologist came to our room and told us that Christian had brain bleeds and a cyst. Apparently he had a stroke while inside me. All I heard was brain and there is a problem. It doesn't take long for it to sink in that your new precious boy has brain damage. After the doctor left the room Eric and I just cried but it was at that moment we could be angry or we could fully turn to God. We chose the latter. Right then we prayed and the scripture "I will never leave you or forsake you" was layed on my heart. At that moment we knew that God was with us and never leaving. I later noticed a notecard on my fridge with a scripture on it and guess what that scripture was Deut. 31:6-Be strong and courageous , Do not be terrified or afraid of them for the Lord your God is with you HE WILL NEVER LEAVE YOU OR FORSAKE YOU. I've had that on my fridge since college and all along God knew I was going to need that scripture. I know one thing for sure on that day when we recieved the worst news, God was with us and that peace that passes all understanding!
to be continued

Getaway

We started our Branson vacation getaway last night. Big Cedar is amazingly beautiful! I've never been here. Ohh the trees are just gorgeous right now. I hope to get some pics on. It is raining right now but that's ok because we are just enjoying a movie and i'm catching up on some blogging! I thought I may have nightmares of the deer and fox staring at me in our room but the bed was so comfy that I slept like a baby. It's so weird though to be away from Christian. I do miss him.

Surprise

Man I can't believe what has happened since I last blogged. I've been so busy with fundraising that I haven't been at a computer in awhile. Many of you have and haven't heard about my exciting and surprising weekend at our churches women's conference Oct. 16. Sorry I'm excited to share the story with all of you!

James River Women started a "Be a Gift Foundation"this year. I was nominated and chosen as a recipient for this(along with another lady). I had no clue but behind the scenes work had been going on with my mom and friends since august I believe. Sooo Friday of the conference Debbie Lindell was closing up her sermon and started talking about this and said "these women have no clue what is about to happen . . ) and i'm thinking wow those women are going to be shocked. Well then my name was called and I was thinking I have to go on stage and i'm not dressed cute. I was completely shocked. So right then and there we were wisked away in a limo to a day of pampering. Starbucks, A Valerie Bas Salon for cut, color, and make up, lunch served at the salon, then a shopping spree at Dillards. That was a lot of fun and they picked out trendy clothes-no khakis, plain blue, or solid shirts for me. Then we had supper at Nakato's! yummy. So we arrived back at the conference all dolled up and ready for some powerful preachin!

We were told that on Sat we would come on stage and talk about our day. Ok no problem. Oh little did we know there were more suprises. So I come out (of course doing my model walk) and sit on the couch and here comes Eric and Christian. I"m of course crying. So they precede to tell us about a 4 night get away in Branson, SDC tickets, spending money!. I was so shocked! 4 nights and no mommy duties! And then they bring out new luggage! Ohh too much. Then Debbie starts talking about how they found out about us raising money to send Christian to KC for treatment. And they bring out a big check to cover his treatment! I'm of course crying!

God is so faithful! The neat thing is that I was chosen before we even decided about KC. God knew all along. We are so blessed to have Christian's first round of treatments covered and we are even more excited to continue on with the dodgeball tournament and use those funds for a 2nd trip this summer. It was always our hope to be able to continue the treatment and now God has made that possible. The tournament had already been in the works so we are still doing that.

Thank you all for your support, prayers, and donations! You are making a difference in our lives and especially Christian's life. I can't wait to see what the future holds!

Dodgeball Tournament Coming Soon-Nov. 8th

Yes that's right dodgeball! Now this isn't the line up on the wall dodgeball. Much has changed. This is 2 teams battling it out to raise money. We are putting together a dodgeball tournament fundraiser to raise money for the treatment Christian will be receiving at Kansas City. He will be getting Hyperbaric Oxygen Therapy and Intense Physical Therapy.

Information about the Tournament on http://www.dodgingtomakeadifference.blogspot.com

Any questions email me at russellrobyn@yahoo.com

Also Garage Sale to Benefit this trip will be Oct. 24-25 at my house.
Email me for directions.

CMN Mile Walk/Run

This is a picture of us from the Children's Mircale Mile Walk/Run this past May. I think we had about 24 of us walking in honor of Christian. The CMN has helped us with things like gas cards and travel expenses when traveling to doctors appointments out of town. Although we didn't break any records for time walking a mile we all had fun. Afterwards breakfast was cooked up at the Russell House. Thank you to everyone who came to walk. I hope that we will have even more next year.

Good Times with my friends

These are my friends-Sam, Addie, Ella, and Sophie. This is usually what it looks like when our moms try to make us get together and take a picture! Who knew a recliner could hold 5 people! I love it when the girls run around and scream. It makes me smile. And Sam and I just like to swap toys to chew on. This is an old picture. I'm 21 months old now and I was about16 months here. So I have to tell the little funny story that was produced by Miss Sophie. About 2 weeks ago her mom, me, christian , and sophie were playing in the floor and Sophie was singing to Christian and looking at him while Lisa and I talk. Then Sophie turns to her mom and says "Mom-Christian has eyes". You see Sophie prays for Christians eyes so that he can see and in her 3 yr old mind I'm sure she was thinking "why did you say he can't see if he has eyes". So Lisa reminds her that his brain has an owwwey. And Sophie says "yeah but he has eye". I love the thoughts of the little children. Thanks for your prayers Sophie.

The day before I was born. . .

The day before Christian was born.. i ate a healthy meal of double cheeseburger and fry from McDonalds's on our schools McDonald night. Little did I know this would be my last meal for awhile. That night I didn't feel like he was moving as much or really at all. But I chalked it up to not having a lot of room in there. Still yet something just didn't seem right. So I awoke around 4 am on tues from a dream that I had. In the dream I wasn't feeling him move so I went to the hospital. Well when I woke up I just had this feeling that something wasn't right. Thank you Lord for the help! So we called the hospital and decided to go ahead and go on up and not wait for the return call. Basically they found that he was not responding to stimulus and I had preeclampsia. The situation started as "you will have your baby today" and then quickly turned to "your having an emergency c-secition in 30 minutes". Well alrighty then. I just thought ok they need to get him out and everything will be fine. As I lay on the operating table I just remember thinking- this table is very skinny and I can't believe they are cutting me open. It became obvious after Christian was born that something was wrong. There was no joyful announcement as he was pulled out, no crying by Christian or me. I knew it was quite for a reason. They quickly showed him to me and then took him to the NICU. As Eric and I waited in the recovery room, my doctor came in and told me that I already had those motherly instincts because had we waited until this afternoon he might not have made it. (and i don't include this to pat myself on the back but to give God the glory for our son's life) Well not exactly the storybook beginning of parenthood. To be continued. . . .

These boots are made for walkin

This is Christian in his "Pony" gait trainer at physical therapy. His therapist, Sarah is behind him. She's awesome. Just wanted to give her a shout out!!! I think the most steps he's takin without assistance is 5 or 6. Although he is stubborn and doesn't show off during therapy but likes to really get movin around 8:30 or 9 at night at home.

Christian's nephew calls his braces his boots so now that's just what we call them. I have to sing the song each time we practice walking.

CLING

This week I was sent a clinging cross. I had never seen one of these but as I waited for it to arrive I couldn't get the word cling out of my mind. I thought what a powerful word.
Cling-to adhere closely or to hold tight, as by grasping or embracing.
I thought about how at times in our lives all we can do is cling to the cross or to God's promises. But that is what we do-cling. I don't stand beside or hang out by the cross. I cling.
The mental picture I get is of a victim in a flood or burning building clinging to a rescue worker attached to a rope and the victim wraps their arms and legs around the rescuer-hanging on for dear life. At the moment of rescue they have no other option but to cling. They aren't just holding on with one arm. But the picture isn't complete because the rescuer is clinging to the victim too! It's just like God-as we cling to Him, He's clinging just as tightly to us. What a thought to know that God is holding on to us thru our tough times-with his arms wrapped tightly around us! How reassuring. And you know He's not saying "ok you got about 1 day or 1 week to cling and your times up." No we can cling day or night for as long as we need to. Can i get an amen!
Anyways just remember that you can cling to Him!
You can check out the clinging cross at http://www.notsoplainjane.com

I couldn't help but humm the tune of old rugged cross.

celebrate the small things

My friends sometimes ask me questions about what my days are like as a mother of a child with special needs and I gladly explain the routines of therapy, doctors appointments, funny waiting room stories, or slivers of sadness. I love to give them a window in to that world because it is such a different world of parenting. I say different because that's what it is-not bad just different. Please feel free to ask any questions that you may have. I'm not easily offended. But I say all of that to say this--mostly I've noticed that I have learned to celebrate the small things.

This morning I noticed Christian feeling his hair with his left hand. He did this Tuesday in occupational therapy and we clapped and watched in awe! (this all usually preceded with "has he ever done that before?" But then this morning was the second time which means it's a habit (that's my standard for an improvement). I watched him slowly move his fingers and whole hand to feel his silky hair and my heart and mouth together smiled quietly, soaking in this new moment. Then I got loud and cheered for this small thing. Because you see Christian usually doesn't bring his left arm up that high or feel something above his head. I've noticed that when you're told to just wait and see what your son will be able to do every small thing he does is a huge accomplishment. They are all major milestones. A Bu,Bu-B sound is cause for a hug, pulling his foot up and stepping once is a clappable moment, and when he brought his hand to his mouth way past the time most babies do-we cried!

So celebrate the small things!!!!

First time for everything

This is my first time ever to blog and I have to give all the credit to Christie-she's my computer mentor. So thank you Christie. I'm actually very excited to do this because I love writing and sharing my thoughts. We all have those days when we witness something so random, beautiful, touching, sad, joyous, etc.... and think i wish there would have been someone else here to witness that. And so now i can pass it on--enjoy the ride.
I also hope to learn how to put pictures on this-maybe that can be lesson #2 from Christie. For now you'll just have to enjoy my words.

Funny story-one of my friends who shall remain nameless gave me a great laugh for the day. She was at a last minute stop at wal-mart with 2 kids still in pj's and a lady approaches her and says ma'am you have something on your bottom. She reaches down to find her 1 yr olds cereal bar from breakfast had made a home on her butt! Just a little shopping and cereal bar on the butt. I hope today finds you with no food items attached to you!