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.

Day 24 of diet & future events

Well Christian has adapted well to the diet. He is his old self again. We have been running 12-18 seizures a day for the past six days. Hopefully this is a sign of more reduced number of seizures. I'm willing to go a month and a half now that we are seeing some kind of reduction.

3rd Annual Dodging to Make a Difference Dodgeball Tournament
-date and place to be announced. There is a chance we may not be able to have it at Upper Elementary due to the fee they are charging. Also Bryant Elijah( our son on the way) is due around dodgeball time so we are still waiting on the date of tournament. Either i will be very pregnant or have him strapped on me in a carrier:)

day 6 of diet and hospital story

This is Christian day 1 of diet in his stander with his iv pole beside him. We had him stand and wheel around the halls for a change of scenery.

well here is the update-this is easier to implement at home! we are able to get his fat in his diet with oil, butter and mayo so he doesn't have to just drink the heavy whipping cream. he was refusing it and throwing it up the last day at the hospital. i think it was just too much for his stomach. he seems to be getting back to the "old christian". the first few days he just wasn't smiley and happy like usual. the seizures have not reduced any but it's still early.

My hospital story---
So something always happens when we have a hospital stay or visit that leaves me with a funny, sad, or emotional story to share. This story i would categorize under the "o dear, i need some help" category. So here we go. . the last day the nurse takes his iv out and it's not bleeding so she just puts a band-aid on and no big deal. . .except that 45 seconds after she walks out i look down and blood is oozing out of the band-aid everywhere. so i can't reach the call button for help and i have started to collect the blood in my hand(so as not to get on Christian's nice shirt he's wearing) that is not holding christian. i basically have him with one arm and sitting on my legs. i "squat/walk" to the hall and yell for help. the blood is cupped in my hand and spilling out by now. luckily our room is right across from the nurses station. a med student hears me the second time and pops her head out and i'm telling her i need help(as if it's not apparent by a 5 mth pregnant mom squatting in the hall with blood dripping on the floor from son's arm). she yells for the nurses and walks away. thank you med student for at least yelling for the nurses. so then our nurse and several others come to take him and stop the bleeding. I was i'll admit kinda crying and saying "i couldn't reach the button". the nurses were wonderful and stopped the bleeding. there was no big crisis just lots of blood! lesson learned-l1)et the blood just drip on the floor and use other hand for holding child. 2) yell louder 3)apply pressure to bleeding 4)umm probably don't worry about nice shirt:))

day 4-going home!

yeah today we go home! they are nice here but you know it's always easier not living in one room. Christian is starting to smell like greasey fat. uhhh. i think it is seeping out his pores. they will take some final labs before we leave and hopefully we will leave after lunch.

Day 3 on diet

I knew something was off when i walked in the room and eric was holding christian with no shirt on and they both looked tired. Christian threw up at 4 am all over everything. That was apparent by the stench in the air. I'm sure all this fat is a schock to his stomach. Not that big of a deal but not a fun early morning for daddy! thank you eric for dealing with that while i slept at the Ronald Mcdonald house. Luckily they went back to sleep after that. So after a bath and load of laundry we hit the morning running.

Christian is on his full meal menu that we will go home and continue with. He's doing well with the food. A little more no his happy self but that could be just not being at home and having an iv and pricked finger for sugar checks. He has walked in his walker a little.

Seizures
Seizure count was the same yesterday and today by 2 his count was at 9. So that's not bad. Hopefully they will continue to decrease. I probably won't be able to update as much once i'm home but will try to weekly.

day 2 on diet

so we finally got some ketones in the urine last night at 6:30. yeahhhhh! it took longer than most kids for some reason. usually show up after 12 hour fast. who knows?? so we've started with the diet but small scale and then will work up to a full meal over the next couple of days. He sucked down the heavy whipping cream drink. it's basically a measured amount and as much water as we want. this is obviously where he is getting his high fat in his diet. I guess after you fast on water then anything tastes good.

we will be keeping close track of seizures to see if there is a decrease over the next month or two. this hospital life is quite funny all the lingo-flushin the line, nbo (or something, it means nothing but. . .)all i know is it means no food, ketones, and all kinds of other things that i never wanted to have to know. staying in the hospital reminds you of how bad you don't have it. the icu burn unit is on our floor but different hall and i can only imagine what those parents and kids are going thru. i seem to loose track of time or i should say the hours are filled with waiting until the next meal and keeping christian distracted. we are roaming the halls in his stander just to get him in a different position and change of scenery. we pass other kids walking or riding in little cars or wagons. I think the goal is to distract them as much as possible. Others are crying in their room which is sad:(

more to come. . .

he doesn't seem to be fussy due to less food or anything. hopefully he won't. they can adjust his calorie intake if he is. he is having his blood sugar checked every 6 hrs to make sure it doesn't get too low. the nurses are wonderful here!

THANKS for all of your prayers and comments. I hope that the month or 2 to come are seizure free. AND forgot we are 20 weeks pregnant with our next little boy! please keep him and I in your prayers. we are due Nov.9th. don't worry the 3rd annual Dodging to make a Difference tournament will go on just not sure of the date yet.!!

trying ketogenic diet

We are trying the Ketogenic Diet with Christian, to see if it might help decrease his seizures. We are in the hospital for about 3 days to start it. They will need to monitor certian levels in the body before going home and teach us what and how much to feed him. The diet is high fat and low protein/carbohydrates. He is only allowed a certain amount of food per meal. He will be eating exact calories. The diet is tried when medicine does not help control seizures.

Right now he is still having 20-30 small seizures a day. We felt like this would be worth trying. If it doesn't help we just go back to normal eating. Basically your body uses fat for energy instead of carbs. This releases ketones in your body which in turn affects seizures. We are praying this helps.

1st day
I hate doing I.V.'s for multiple days but that's what we have to do. He screamed , it wasn't fun but that's just how it goes. Right now we he is fasting and waiting for his body to produce ketones to actually start the diet. 19 hrs and nothing. Come on ketones!

More to come. . .

Christian's 1st Fishing Experience

Christian went fishing with his daddy at Lake of the Ozarks and caught a BIGGGGG FISHHHH! We have pictures and videos to prove it. There's also video of Christian walking!

still working!

The video is of Christian practicing to keep himself up while sitting.

i wanna hold your hand

Monday went ok. Christian seemed to not be himself. And later that night he woke up every 2 hrs due to being congested so he's a little sick nothing bad but we took tues off to let him rest. He was pretty blah on tues. But today he did really well with what we worked on.

new walker
Today we worked more in the walker you will see on the video. I like this one because it keeps his body in ailignment and he just walks more correclty in it. He's still slow but that's ok he's getting more used to it.

Today I had one of those moments where I thought wow this is new -never done this. As Christian walked in this walker I held his hand. It's just something that I've never experienced-Christian being upright, moving, and holding his hand. It was a delightful treat for me and he seemed to enjoy it. Enjoy walking hand in hand with your child! This wasn't one of the best video's but I didn't catch him on camera the other times today when he was walking.

happy mother's day

" I"m working hard Miss Brandy"


During this week Brandy was really trying to see what Christian needs the most work on. She will be focusing on stretching out his inner thigh muscles and getting him to really use both legs at different times when walking. Hard to explain but he will be doing a lot of walking, standing, and sitting while propping or pushing up with his arms. The idea is to get him doing more by himself or with less assistance.





HAPPY MOTHER'S DAY


I always thought I'd be a mother one day. You know change diapers, run in the park, tell your child no. . . all the typical mother things. I never thought I would be the mom of a child with special needs. I don't think anyone ever anticipates that your child will be anything but healthy and typical development. I must admit that at times it is extremely challenging and sad. But I can honestly say that those times are very few. I am more overwhelmed and thankful for the smile that Christian has all day and his ability to work harder than I (as an adult) could ever imagine. Like I always say it's just a different way of parenting. Thank you Christian for making me a mom!!! I luv you for all times!

Intense PT program at Sikeston 2010-week1

We are back for our second round of intense physical therapy at the Kenny Rogers Child Center in Sikeston. First I would like to say thank you to those who have contributed financially to Christian's therapy programs like this. We appreciate all you make possible for him!

This week Christian is just trying to get used to working on using his body correctly. He received botox injections and another type called a phenol block in muscles in his legs. Basically it helps his muscles relax, instead of staying contracted all of the time. He gets used to standing, sitting, walking incorrectly with those muscles that are pulling in the wrong places or too hard and then when they are released he kind of has to relearn to do things correctly. That's what he's doing while we are here. That's the easiest way for me to explain things. So he is not taking as many steps as he was last week but now he's learning to take them using the correct technique (or muscles). The first week is a little more difficult to watch because it kinda seems like 2 steps forward and 4 back. Everything is hard for him but i know that this is all going to help him.

The device on his legs that he has on during walking is new and he's trying to get used to it. It keeps him lined up the way he should be. It's great to spend time here with my parents and granny!

*the pics are from the Laci's Hope 5k race. My group of friends who have children with special needs turned out for this. We had lots of fun. So what if it took an hour to walk 3 miles. Also eric got 3rd in his age group. That pic is of them putting his medal on Christian.

Christian is 3!

I'm finally getting some pics and video on here. Sorry just been busy with life.

Christian turned 3 on January 30th. It's hard to believe. He definitly has the big boy look and is as tall as a 4-5 year old. Eric, Christian and I celebrated with cupcakes and a little time at the local gymnastics place. Christian likes their inground trampolines! What kid wouldn't? We decided to hold off on his party until it is warm.

We also decided at this time to hold off on preschool. He would have only been there for 2 and half months so we decided to just wait. In the mean time I have been able to do more with him since we don't have first steps therapy (it ends at 3). I have been able to take him walking in his walker everyday but Sundays. Day of rest for him and mom! His walking has improved tremendously. It is soo exciting to see his first look of independence. He is taking most steps on his own and able to push the walker by himself for about 6 steps. In the video you will see me with my hand in between his legs or more on the right leg. I"m only helping turn his leg outwards. His whole body will turn to the left if i don't. But otherwise he is doing all of the work. We are up to about 30-40 mins of walking a day and then more time standing in his stander or at his table.

His eating has also grown by leaps and bounds. We only blend about 1 meal a day!!! He can eat so many more whole foods which just means less stuff to pack when we leave and more normal meals with other people or at restaurants. It's still slow eating but hey we are getting there. Maybe I will burn our magic bullet blender on the great day that we don't need it anymore.

Special Needs Moms Moment:

The past month during preschool testing there was one of those times when after pointing out how low my child is on a testing scale (not attacking the school, testing has to be done), I went in to one of those overwhelming moments of "wow! he really has a lot to overcome". Most of the time it's not pointed out how low functioning he is or where he is compared to most kids but the time's when that is pointed out it can easily get you down. The tests don't consider where he started and how much progress he has made in 3 years. I think it's one thing to just be blind or just have cerebral palsy or just be non verbal (not that any one of those alone is easy) but it's another thing to be all of those diagnosis. These moments are few and far between and I remember how far Christian has come and not how far he has to go.

Just a Suggestion:

For goodness sake's -open the door for people who have their hands full. I'm sorry but it has to be pointed out. I'm really not bitter but just thought it would give everyone a reminder to be aware of those around you. Or maybe america could install button on everydoor so I could push it and easily take my stroller thru . . and sometimes my walker that i'm dragging behind me:)

I'm just sayin. . . .

Last but not least enjoy the chips of ahoy video!

2009

2009 will be divine. that's what my husband stated last year. At the time i have to admit that I didn't know if I truly believed that statement. After all Christian was having 4-6 grand mal seizures a day. Our goal was to get him fed during the day and that was about it considering he would fall to sleep after his seizures. Thank God for a husband who has faith when sometimes I can't see past the seizures for the day.

January- we went to kansas city to try hyperbaric oxygen therapy and intense physical therapy. We saw some decrease in his seizures after this and huge improvements in his motor skills.
May-took a trip to urgent care for a seizure that didn't seem to be stopping. 2 days later his grand mal seizures stopped and have not returned to present day!
He still had his small "bouncy" seizures. We returned for 4 more weeks of hyperbaric treatment and his small seizures stopped.
June-August we experienced lots of family outings that before weren't possible or just weren't enjoyable due to the seizures. Christian also received therapy in Sikeston for a total of 3 weeks over the summer and we saw some amazing results in his strength and his left arm (the weak one).
November-Intense physical therapy in Sikeston. Again Christian gained more strength in his trunk, neck, legs. Improved walking!
December-Christian's eating/chewing has tremendously improved. He is able to eat more food without having it blended! yeah less work for me!

I'm also part of a group of moms that have special needs children. We get together once a month and just hang out and share ideas and information and just laugh!

This year has been one of the best. I look back on all of the changes that have occurred and feel extremely blessed. We continue to pray that one day he will be seizure free! Feel free to look back at jan/feb pics and videos from last year to see how far our little man has come. Thank you for being a part of this journey!

Back in K.C. for hyperbaric treatments

Hi everyone,

We are in kansas city and doing 20 dives. So we are on week 2 of our treatments. This week our friends Tara and her daughter Lilly who are also doing treatments and rooming with us. It's nice having company and an extra hand! The picture below is Christian's first lesson in sharing or should I say letting a girl get have what she wants. The both enjoy piano playing!

The video of him walking is about 3 weeks ago in springfield. We were testing out not having his hip brace on which keeps his hips in line. Sometimes he just wants to lean on it though so we took it off.

I am keeping track of his seizures to see if there is any change after the treatments. This will be good because i won't go off of memory on how many he has per day but it is a little sad to tally mark each time he has one. I'll have to admit one day I said forget it we've hit the 30 mark and i'm done counting. Although yesterday he only had about 18 so that's better than 30!

Thanks for all of your support to get Christian here for these treatments!