Intense PT April 2011 Day 1-2

Well it's been a year since we were last here and we are so excited to get to work! Well I guess Christian's getting to work and hopefully he's excited. This program is called intense physical therapy because he works 3 hrs a day, 5 days a week for 3 weeks on physical therapy goals. He will also be using the "suit" depending on how he does in it. In the past it has been "sensory overload". He will be doing a lot of work on walking in his Taos brace (black brace on his legs) in his walker (blue walker). He will also work on standing, hopefully leading to more independent standing. He is lifting weights to strengthen his legs and doing sit to stands to strengthen the legs and booty:) The Kenny

Rogers Child Center has recently added on the new gymnasium along with several other rooms to accommodate different types of therapy. Christian is working in a separate room to lift weights, do cage work , standing work. . . basically Brandy (his PT) works just with him in this room which is good because there aren't any distractions. The additions to the center are amazing!! I took video and you will see Christian standing and playing at some of the gym equipment! (he is playing at a piano in one of the pictures).

THANK YOU-to all who participated and volunteered in any capacity in the Dodgeball Tournament!! You made it possible for Christian to come get the therapy he needs to move forward in skills leading to more independence!! Thank you so very much for making a difference! If you are on facebook you can type Dodging to make a Difference in to the search box to find our page. There are pics and video from this years tournament!

I see you and I hear you

I wondered how my relationship with Bryant would be compared to the one I already had with Christian. As any mother would (who has 1 child and 1 on the way), I thought how could I love a child more than I do Christian? I hoped Bryant wouldn't feel neglected due to Christian's 24/7 needs. Of course, I also wondered what it would be like to have a child do all of the things that they just naturally do as they grow and develop. Things that Christian hasn't accomplished yet or may never do.

When Bryant turned about a month old I realized that I had a very special and different connection with each son. With Bryant there is this visual connection. He is a "watcher" , "observer". He is always looking for me or watching his brother. He seems to be studying what we are doing. Frankly it was a little odd for Eric and I to look over and see Bryant staring at us:)) We weren't used to that. Christian and I have an auditory connection. This seems like an obvious thing since he can't see but it is so special and unique to him and I. He knows my voice like Bryant may never need to know. He responds with that bright smile or other facial expressions when he hears me talk or sing or make crazy noises.

I've always explained to others who ask "how do you know what christian wants or likes"?---we are like dance partners who have been dancing all our lives together. We've never had other dance partners. Sometimes I lead and sometimes he leads. We don't have to talk , we just understand each other without words. Shoot we have our own music that we dance to, i guess:))) I don't know if I want him to theoritically have other dance partners but I'm sure others would love to learn his "dance". Slowly I'm letting others cut in. . . . . .

3rd Annual Dodging to make a Difference and updates

It's been a couple of months since my last post so I thought I would catch everyone up to speed. First of all we had a great turn out for our 3rd year of the dodgeball tournament. We had to move it from Nov. to Feb. to the birth of Bryant Elijah!! We will be moving it back to Novemeber so technically we will have 2 in 2011. That's the only way we can get back on track. It's too scary worrying about our crazy winter weather.

THANK YOU
Thank you to all who participated, baked, worked before and during the tournament, gave financially and everything else that it takes to put this together! I would like to thank the following businesses that donated-Ozark: Taco Bell, Shoney's, Lamberts, Rib Crib, Grant's, Sonic, Prima's Mexican Grill, Dominoes, Godfathers, Casey's, Valvoline Express Care, Village Inn, Jenicas Photography, Impact Martical Arts. . .Springfield and Branson-Chesterfield Family Center, Andy's frozen custard, Famous Daves. . .Sikeston-State Farm,Sharon Bryant. . Ohio-Pro Image Group (t-shirts). We appreciate the items and gift cards that were donated for door prizes and team prizes!!!

Updates on Christian
SEIZURES
Christian is still on the Ketogenic Diet (10months)for his seizures. We have seen a tremendous decrease. He goes most days without having any or having very small ones!!!! This is such a blesssing and seems to be helping him retain what he is learning.

VISION
Christian goes to Drury University's vision therapy once a month and receives therapy at preschool. He seems to be seeing things that are presented on the left , about an inch away from his face. We are working with a light box and presenting objects to him to "look at". This helps train the brain to use it's "muscles" to look at objects longer.

MOTOR SKILLS
Christian is continueing to make progress in his walking with his new Taos walker. It just takes lots of practice. We are hoping to get him back on the treadmill to get more of that repition. There is video in the post before this one. He also has a new seat that is very useful in giving him support to sit up but not so much that he doesn't have to work to keep his trunk stable and use more head control. He is also using his right arm (the good arm) to prop when he sits on the floor. This will hopefully lead to him being able to catch himself if he fall which would lead to more independent sitting. He is also using his left hand(bad arm) more to activate toys.

DRINKING
We just started speech therapy with one goal-learn how to drink from a straw!! This would be great. He could give himself a drink. Right now he can take 2 or 3 sucks each time. It is a matter of repition and him learning "oh i put my lips together and suck and i get a drink".

Well I think that catches everyone up on everything. We hope to go to Sikeston for Intense therapy in april or may. We are waiting to here from the therapist on our dates.

THANK YOU for running and giving!

Shannon, friends, family, and strangers--

A thank you letter does not seem sufficient for the gift that you gave us! I will try to convey in written words how thankful we are for your love and generosity. Since the birth of Christian, I have been blown away by the care, love, prayers, and financial support of family, friends, and strangers. Christian has taught me many lessons, one of which is accepting help and setting aside pride. We do need each other in different times of our lives. Sometimes we are the giver and sometimes we are in need of the giving. You all have blessed us by being givers (blessers)! Thank you so much for your contribution to Christian's life!

I am privilaged to know Shannon and her family through her sister in law Leah. I knew I liked Shannon the minute I met her. My first impression of her was that she was fun, had a genuine heart, and loved God! Time and again she has sent me a message of encouragement at just the right time. Thank you Shannon for the time, energy, physical stress, and heart that you have put in to my sweet Christian's life. Thank you for being Christian's legs! One day I hope that he can be someone else's legs and pay this forward. This was the best birthday present ever!

What did Shannon do??

For those of you who may be reading this and wondering what this post is all about I will fill you in. Shannon Parks was training for a marathon and as she was training decided that she wanted to run 26.2 miles for a reason. She decided to run for Christian. She emailed her friends and family to ask them to sponsor her and give towards Christian's medical expenses. We did not know any of this! She ran the Honolulu Marathon in 4:44:24!!! I'm very impressed! Shannon's sister in law , who is one of my best friends came down for my birthday (which was the day of the race) to deliver the money that was raised. I thought she was just coming down for my bday. I didn't make it past the first sentence of the letter! What an amazing blessing.

Update on Christian

At this point Christian's biggest goals are to gain more independence with walking and sitting. We are working towards taking more steps in our walker, learning how to sit by himself. Currently he can take steps in his walker (about 5 at a time, rest, go again). His trunk is stronger but he still doesn't catch himself if he starts to fall (while sitting). He has been on the Ketogenic Diet for 6 months and continues to do well. His seizures have decreased from 30 a day to 4 a day. We are still praying and working towards seizure freedom! Christian continues to be the smile in my day!

On behalf of the Russell family thank you from the bottom of our hearts! You are making a difference in Christian's life! I will be posting a video soon!

2 different deliveries-Same outcome

In my last post I was 7 months pregnant with Bryant and now he has joined the world and is 3 weeks old. I thought I would post one of my personal stories. Several friends had asked me the question of "are you nervous?" "are you excited"?-all in reference to Bryant's soon arrival. My honest answer was no I'm not nervous (as in something may go wrong) and I'm not going to be fully excited until he is here and everyone is healthy. And those are my answers because I used to be one of those pregnant women who figured everything would turn out fine but after Christian was born I joined the "things can go wrong-even at the end of pregnancy" club. I"m a realist. So I couldn't get fully excited until I knew Bryant was o.k. Otherwise I did not spend 9 months worrying about it. I knew that no matter what God was in control of the outcome. Plus we already know what to do with a child with special needs!

Christian's Delivery

So I will let you in on what the delivery of Christian was like. I hope that you do not see this as a sad thing but just the experience of 2 different deliveries and where I'm coming from with this post. The morning he was born we went to the hospital because he was not moving and I just knew something was "off". Once we got to labor and delivery they discovered that I had preeclampsia (to fix this you deliver the baby)(complications to me could be siezure and stroke) and Christian was in distress. When laying there I thought please just let there be a heartbeat. When I heard his heart beating on the monitor it was a huge relief and I thought ok he's alive and everything will be fine. The nurses said he would be born today by inducing or csection. Five minute later they came in and said your having a csection right now! I still thought things were going to be ok. They took me to the O.R. and everyone was rushing around. Laying on the operating table I was thinking man this table is so narrow! Why I was thinking that I do not know:) When they pulled Christian out he was blue and never cried. I waited for that cry as the next signal that he was ok and it never came. I still thought maybe he just isn't a cryer. Several years later I realized that I felt like I was robbed of that monumental first cry. I guess it was easier to keep giving him chances in my mind for him to be ok. There was no emotions , no joyful tears. I mostly was just waiting-waiting for a cry, waiting to see him, waiting for the nurses to say things like ohhh he's cute or just anything normal. I finally saw him and kissed him before they took him away. We would later discover the medical problems that Christian had and the fact that if we would have waited he may not have made it. The days to follow were not filled with flowers, guests, celebrations, or joy. I couldn't have visitors due to my condition and Christian was in the nicu. I mean you can't expect freinds and family to come see you and be all happy and saying the typical happy phrases that are said at the new arrival of a baby. We were thrown in to a medical world of machines, medicine, tests, and diagnosis. Don't get me wrong Eric and I were extremely in love with our little boy and happy to have him in the world-it just wasn't the beginning we pictured.

Bryant's Delivery

In complete contrast, we had a scheduled day and time that Bryant would arrive. We packed our bags, showed up on time, and followed typical procedures. It's only now after Bryant's birth that I see how different Christian's delivery was. Even the order they get you ready for the csection was different, of course because it wasn't an emergency surgery. I'm sure the nurses wondered why we were not extremely excited before delivery. I would say we were both just quiet because we were waiting for Bryant to arrive and finally know that he was healthy. This time I went to the O.R and knew the nurses in there and saw my doctor ahead of time and even sat on the operating table and waited for the spinal block. I watched them prepare the equipment. It was so much more relaxed in the O.R. than the first time. I noticed how white the room was and big, very big. There were definitly less people in the room than before. It was time--Bryant was ready to come out and the doctor says "he's got black hair"! I smiled and couldn't believe it. The fact that she commented on something so simple was so precious because that's what was supposed to happen. Phrases/comments about your baby! We didn't experience that with Christian. And then the moment came when Bryant started crying!!! This was the moment I never had before. It was the sound of life, sound of "he's ok", sound of joy! It was a first for us. We were able to watch them weigh and clean him and Eric was able to hold him and he wasn't rushed away for anything. He came to recovery with us and it was just wonderful and amazing. There was emotion and relief! I could be fully excited!! This time the next 4 days were filled with guests, flowers, well wishes and normalcy. At one point Eric and I commented that this was so easy! We thank God for Bryant's health and safe delivery!

I thank God for the outcome of my 2 different deliveries----2 amazing, unique, loved little boys! The miracle of life comes in many different packages!

Pics of Christian and Bryant (on the way)

My friend Jenica tooks some precious pictures to remember the pregnancy. She did a great job! Thanks!

Christian is doing great. We are on day 87 of the diet and he is down to about 4-8 seizures a day. We are excited about that. He is much more vocal! Let's us know he is Hungry Now!!

School is going well. He seems to not dislike it so that always a plus! It's still hard to let others work with him when I've done that everyday for 3 and a half years.

It's odd to think that soon I will have 2 sons to love. I know that Christian and Bryant will learn lots from each other. It will be odd to see 2 in the backseat or say I have boy(s) instead of a boy. Eric and I can't wait to spread the love.

Summer pics and diet update

Christian had a great summer of swimming and swinging! His favorites!

We are on day 67 of the ketogenic diet to help reduce his seizures. I am HAPPY to report that he is now only having 7-12 a day! That's down from 30 before we started the diet. We hope that the numbers keep going down. Enjoy the pics and videos.

Going to Preschool

Christian also started preschool in Ozark. His teacher, para's , and therapist are great. He seems to enjoy but we have noticed a little more crying at unfamiliar voices. Not at school but at home. I think he thinks i'm going to leave him. At least he doesn't cry at school. There is a picture with his backpack on.