It's not just a straw!

In February, we started speech therapy at Ozark Therapy Institute in Springfield Mo. Our insurance does not cover speech therapy so I figured since we were paying out of pocket I should find the best. From other parents, I heard of this place and how great they were. Sometimes the best word of mouth is from patients themselves!!

My goal for Christian was simple (well simple as in 1 goal)--teach my son how to drink from a straw. To be honest others had tried and I kinda thought it may never happen. Mostly due to the fact that Christian bites everything-including former straws:) To me it seemed like a pretty impossible task yet very important skill!!!

I called OTI, described Christian's diagnosis, mental and physical abilities and hoped that the therapist didn't think my goal was unattainable. Before the conversation was over I remembered that I forgot to tell him something about Christian. . . . "oh and he's blind" (on my side of the phone I'm thinking don't let this be a deal breaker:)) Teaching a blind/cognitively impaired child to drink from a straw could be difficult. Mr. Dan McCool didn't seem to think it was a problem. . .challenge maybe. . . but not a deal breaker!(he didn't say that).

And so we started speech therapy and the quest for Christian to drink from a straw. After about 4 weeks he was drinking from a straw!!! I just about fell out of my chair. Over the following weeks he improved more and more. There are so many technical things that go in to drinking from a straw. Since I'm not a therapist, I can't quite explain it all. But for Christian to round his lips on the straw, suck, and swallow is quite an accomplishment. It was just amazing. I probably sent our therapist way too many videos when he started seeing him make so much progress at home. I never thought I would see him drink from a straw.

So it isn't just a straw. . . it means Christian can safely drink liquids, it means we aren't spending a bunch of money on sippy cups that he bites holes in after 2 days, it means I can give him a drink without him in my lap, it means I can give him a drink with one hand and feed Bryant with the other, it mean we can give him a drink in his carseat, it mean his lips, tongue and jaw are doing different things to accomplish a task. . . .. that's why it's not just a straw.

After accomplishing this I thought . . hmm what now? Well since then we have been working on communication skills. Christian can sign for more and is close to being proficient in signing for drink. We are working on a combination of signs and vocalizing for his wants. This is simply amazing to me. It just goes to show that when you have a knowledgeable, caring, you can do it attitude speech therapist and the tools to know what to do at home . . . much can be accomplished. I hate to admit that it took Mr. Dan to help me believe that Christian was capable and has so much potential (THANK YOU). I will try to get video on here soon.

4th Annual Dodging to make a Difference!!!

THANK YOU -- to everyone who participated in anyway and donated towards our dodgeball tournament. We greatly appreciate each and every one of you who are involved in our son's life!! We had a good turnout and a new adult team won this year!! Can't wait to see everyone next November for the 5th Annual Dodging to make a Difference tournament! Christian will be heading to Sikeston in January for intense physical therapy program.

The Russell Family

a wrong turn sometimes leads in the right direction

It's been awhile since I posted anything but we have been enjoying summer and all that includes-swimming, swinging, out of town appointments, the lake, and vacation at the beach!!!

We went on vacation to Destin, Fl in July. This was our first time to go there and the first time for both boys to go to the beach. The weather was perfect all week!!! Christian enjoyed the waves crashing on him and just relaxing (i pretty much took a therapy break and so did Christian:) Bryant enjoyed playing in the sand until he put it in his mouth and eyes. Woops!

On our way home we took a wrong turn for some reason and ended up traveling towards Alabama instead of Mississippi. This was quite annoying at first due to the fact that our children don't travel well and this wrong turn was going to add on an hour probably. Well there was really no turning back so we continued on. About 3 hours in to the drive we stopped at Wal-Mart to feed the boys and I noticed Christian was acting funny --a.k.a having a seizure. We gave him his medicine that should stop it. We started back on the road thinking that the seizure had stopped. Ten minutes down the road we noticed he was still having a seizure. The closest hospital was about 5 minutes down the road-thank goodness!!! We called ahead to notify them we were coming. Well long story short--that got the seizure stopped and then flew Christian on to Children's Hospital in Birmingham. Of course, while in the first hospital there was plenty to watch as we waited for the helicopter. There was the drunk guy who kept asking for his drugs and wondering around (very amusing) and the older lady that just wanted to know what was wrong with Christian. I replied "he has seizures". Then she said "no, what's really wrong". I assumed she wanted the answer "he has cerebral palsy". Oh man!! The staff there was great! It was rather odd to watch them wheel Christian away and watch them load him in to the ambulance while we had to drive to the hospital.

Children's took great care of him. We stayed overnight for observation and left the next day. My night however was a buffet of sleeping arrangements. There were only chairs in his room and the waiting room so I slept on the linoleum floor for a while then climbed in bed with Christian then tried the chair. None of those options worked for long. So I finally laid myself down in the hospital lobby couch. It was so comfy till 5:30ish when security woke me up. He says" ma'am you can't sleep down here". woops! I was just testing out all of my options from 12:30-6am:))

And so I say all of that to say this--I'm glad we made that wrong turn which led us to the right hospital!! God knows how to make a detour in to a correct destination!!

Lessons of life by Christian

From time to time God uses Christian to teach me some profound things that maybe I have forgotten or maybe God just wants to reassure me and share with others. I love these moments. I think it's also one of those "learn from your trials" moments. So I thought I'd share in case you need to hear this today.

For the last week or so Christian has been battling allergies like many of us. The difference is that the drainage just . . .well drains. He can't spit or blow his nose. So this has left us with him gagging easily and then sometimes throwing up. We've never had this happen to this degree so of course it's our new bump in the road that we are enduring. Any time I(or Eric) hear him start gagging I jump up and run-yes run to him, roll him to his side and pray that he doesn't throw up. It is necessary to get to him quickly so that we can assist him since he can't sit up or roll over on his own. And if he does throw up we have to change his clothes, the sheets, bathing him and get him back to sleep. This has occurred several times at midnight or the early am hours. I know many of you have had the "throw up in the middle of the night" scenario. The reason I was left pondering our situation is because it has been happening multiple times. I'm amazed at how quick my husband and I can move in the middle of a dead sleep when it comes to helping our son.

For some reason, I started to think about how our aid to Christian is just like God's love and swift attentiveness to us. When we face a trial or are in trouble, He runs/sprints to us as quickly as possible to help us or comfort us. He would never look at us and say umm just a minute-just as we would never do that to Christian or Bryant. There's never an hour that is too late or early to hear our prayers. While we often pray with urgency, God in turn answers with urgency. Giving Christian new clothes and a bath, reminds me that God in a similar way not only runs to us but helps with what we need and cleans us up-and gets us back on track with life. I'm so thankful that I have a God like that!! After typing this though I thought about how in Deuteronomy it says that He never leaves us so I guess that's even better than "running" to us.

Maybe you needed this reminder of how much you are Loved by God or maybe not but thought I'd share.

Goodbye Sikeston , Hello Ozark

Well our time at Kenny Rogers Child Center has come to an end. I can't believe how fast time flies. It seems like Christian always takes off that last week. It makes me want to stay another week. Going away on trips like this is sometimes nice for me (the mom) because it allows me to just focus on one aspect of Christian's disability. Obviously we were working on his gross motor skills (standing, walking)-along with strengthening the legs and trunk. What people don't realize sometime is that I basically keep 8 different people up to speed on Christian and all of his "happenings" on a weekly basis. Three therapist outside of school, four therapist at school, and his teacher (doctors if they apply to the situation). When something significant happens that would affect working with Christian I have to let all of them know. So I sometimes feel like I'm reporting to a lot of people. I need a secretary. I'm not complaining ( love all of the people who help Christian on a weekly basis) because I know it is very necessary but sometimes it's nice to not juggle several different parts of Christian at once. This is hard to explain unless you have a child who requires assistance from multiple people for every aspect of their existence.

After 3 weeks:

-Christian gained more independent standing and pushing back up to stand when wanting to sit.

-Improvement in walking

-Increased weight in leg lifts

-Configured his walkers to appropriately work for him. (this changes often with his likes/dislikes and changing abilities)

-I was able to learn new activities to enhance his standing and walking.

-Increased endurance in different standing positions

-Found out he loves and is able to ride an adaptive tricycle

THANK YOU

We feel like we can never thank you enough for being part of getting Christian to this type of therapy. Many many people gave of their time, energy, ideas, love, money, prayers, and multiple other talents to allow us to take Christian to a top notch facility! Please know that we are so appreciative and that you have taken part in helping Christian get the most out of life!!! Mom and Dad thanks for helping us for 3 weeks ! I couldn't do it without you! Brandy Dallas, your heart, knowledge, and never ending ideas and energy are what make you a fantastic physical therapist! Thank you for all that you put in to working with Christian. There's no challenge you can't figure out! I am in awe of you ability to think outside the box and never quit attitufe to help Christian. He will miss your smooches:)

Love ya all,

Robyn, Eric, Christian, and Bryant

Showing off for daddy and Bryant

Today Christian did an amazing job with his walking in his Taos walker! There is a little bit of video to show that. He has also gone from lifting 5 pounds on his leg weights to almost 10 pounds. I'm so glad he is getting those legs stronger! Daddy and Bryant were able to come watch Christian work. I think Christian is a little more motivated to walk towards daddy's voice than mine :) Most of the time we weren't even around to try to motivate him to walk towards our voice. He's funny somtimes he just seems to do his own thing without any reward or motivation. I think Christian is motivated by the fact that he just wants to move so he does.

Brandy also took Christian in to their vision/black light room (not sure what they actually call it). I thought it would be interesting to see if Christian would work to stand at or even be interested in the lighted objects. You will see the picture and video of him standing at a water filled tube that lights up and changes colors. It changes colors when it detects sound. This room was amazing. He seemed to enjoy standing at the mirror with ropes that light up when the blacklight is on.

Bryant took his first trip down the slide today too. Above are some pictures of him playing the piano with Christian too.

days 8-10

Since I last posted Christian has continued to show improvement in his leg weight lifting, standing, and walking. I posted a video of him lifting weights so you can get an idea of what I mean by that. Brandy is explaining why he is doing this. Also he has been doing work in the 'cage'. Yes i said cage. That's what it is called. The pictures of him with the harness and bungy cords is work done in the cage. You will also see video of him working on standing more on one foot. This just gives his legs the idea that they can be independent of each other. I can't believe we only have one week left! The video of him on the bicycle is of him actually pushing down on the pedal to make it go. She is getting his foot to the top and then having him push. ps-the lack of shorts on a couple of videos is due to them getting wet! promise i put shorts on my boy:)

Day 7-Standing

We are on Day 7 of therapy and seeing Christian make great progress. Today he did more standing by himself and when his legs would start to buckle he would push back up to standing. Obviously this is an important concept to learn so that you don't fall. I don't know why I sometimes underestimate what Christian can learn but today he was surprising me all over the place!! His stance during standing was fabulous! If you notice, he is standing with his legs far apart and his knees aren't pointing in towards each other. He has a tendency to do this due to his high tone. Also when we gave him the bell to play with I figured he would just put it in his mouth. Brandy let him put his mouth on it to figure out what it is but then after that he would just shake it and hit it on the table. For him this is an improvement towards playing with a toy correctly.

Pawpaw to the Rescue---So his Taos stander (the one he is in in the picture) does not have anything to put his hands on. We have found that haveing a handle to hold on to is a huge benefit for Christian. The easiest way to explain this is. . . . .without something to hold on to he is basically suspended with only his feet connecting his body to a surface (the ground). By giving him the handlebars he is able to have his whole body connected together. Feet on the ground-up to the body-down thru the hands-connected to the handlebars. Confusing but that's the best I can do to explain the benefit of having something to hold on to while walking. Also just think if you are in a dark room trying to figure out where your shoes are you are going to put your hand out and feel around, right? So without the handlebars Christian is just reaching around in the air. This can be confusing. So pawpaw rigged up his PVC pipe handlebars. We also noticed less random (i call it hurky jurky:) movement in his trunk. I'm feeling like the new added pipe may need stickers on the front:) his name or maybe speed racer-flames???:))))

church pew moment and bicycle!

I'm sure the post title caught your attention and you thought-whatttttttttttt!!??? In the past 4 years I have been given those moments of "normalcy" to experience with Christian. They are usually filled in with long weeks/months of special needs world (doctor visits, therapy, seizures, gagging, tone. . . . ). The times I remember the most are those moments when time freezes and I watch Christian have a moment where he is doing what other 4 yr old kids would do and so that leads me to the church pew. . . . . this Sunday as everyone stood to sing and worship I had Christian standing in front of me as I sat. His right hand (good one) was at just the right height to hold on to the pew in front of him. Everyone was standing. . .my mom to my left and Eric (holding Bryant) to my right. So I felt like Christian was doing so well standing and holding on that I decided to stand beside him as he stood. I was just so overwhelmed with this moment of standing beside him (giving him little support) and singing as he stood too. I'll admit I almost started crying. Thank you Lord for that wonderful moment!

Today in therapy Christian did some great standing and pushing up to standing in stride (legs apart like your walking). He also did the best walking he has done so far. He sometimes a mystery to his therapist. Today Brandy mixed it up and tried a basic walker (imagine the kind older people use). He did great holding on to the bar of the walker in front of him and walking! I couldn't get video of him because I was in front of him. And then we rode the BICYCLE!!! Oh my goodness another fun "normal" moment of watching my 4 yr old son ride a bike. O.k. so he was being pushed on it mostly but he looked so big and happy. This is good work for his legs because it shows his legs that they can work independently (just like in walking) of each other and it's good work for his muscles to learn to push to make the bike go.

Sometimes our lives are like rollercoasters-up, down, scared, excited. Friday night my husband came for the weekend and the excitement from the boys was like an explosion of JOY! Christian just smiled and laughed and laughed(more than he has all week with me)-and even was more verbal! And Bryant just waved his arms wiledly as if he might take flight. Then Saturday Christian had a seizure that lasted longer than 5 minutes so we had to give him his "emergency" medication. Then Sunday we had some great church pew standing, dinner with family, and lawn mower rides with PaPa! So this is our life of low-lows and high-highs. We are thankful for the positive, blessed moments that carry us thru the not so fun times!

tgif says mom and christian!

I was so proud of Christian today and how hard he worked! Yesterday he seemed very tired so we gave his legs a rest last night and worked on more of his speech goals and sitting/propping on arms. I think the rest helped because today he was back to working hard. -he was much quicker with his weight lifting. (this could also be that he has figured out what his pt is wanting him to do) -sit to stands and standing at his table was less prompting from us and more of just him doing the work on his own (i.e.--when he would start to fall a little to one side he would correct himself) -walking went well today. he made it all the way around the gym. the goal is more laps around the gym with more steps initiated by Christian. Today I held his right hand as he walked. I like to think he did so well because he was walking with momma:) We also used a stick for him to hold on to with his right which was higher than his handle attachment. When he has to reach higher he keeps his upper chest up straighter (good for walking:) Daddy's here! I have to get video of Christian next time Eric comes after being gone for a week. Let's just say Christian was ecstatic, most smiling he's done all week, full of laughing, and talking! I mean where's the love for momma? I'm glad he gets so excited to see daddy! I hope some downtime over the weekend is helpful for the second week of activities!

tv star and tender moments

Well when you go to a long term therapy program like this, everyday isn't going to be great and perfect progress. Day 3 Christian did great with everything and today Day 4 he wasn't having it!! We really think his muscles are just very tired! So today he didn't do so hot with his walking. It's tough when you just want him to do well and work hard but he just can't for whatever reason. Each day is different and a chance to try again!!

TV STAR

On a totally different note the local news shot a short spot on intensive pt programs at the center and Christian was obviously in the shots. I would have put a cuter shirt on him had I known:) It was funny though because it was with Randy Ray who has been on our news since I was a kid. Below is a picture of us!

New Friends

So I mentioned on facebook a brief story of Christian's friend singing to him. I will elaborate on that today. After therapy the next patient was there to work with Miss Brandy. (we will call her Sarah). Sarah was about 5 and is in a wheelchair. Brandy introduced her and Christian. She said Hi and Christian gave her his traditional "thump" with his fingers as he touched her arm. Standing in front of her chair he was at almost eye level with Sarah. Brandy asked Sarah if she wanted to sing to him and if she could sing Itsy Bitsy Spider (Christian's fave!). She began to sing slowly in her soft tiny voice! Christian kept his hand on her arm and stood and listened as she paused to find the words and continued to the end. He was captivated by Sarah's pretty voice. I was told the next day that Sarah told her mom about her new friend Christian and singing to him:) *** above is a picture of Christian's singing friend

These moments of interaction with other kids always makes me so happy as a mom. You see it is rare that children interact with Christian and this is simply because they don't understand why he doesn't initiate interaction such as eye contact, talking, playing, sharing toys,. . . all of those typical things that kids do. In a group of kids he is sometimes ignored. I don't blame kids or their parents at all, please don't think that. And we do have family friends whose kids run to say hi to Christian at school or bring him his chewy when he drops it. Tender moments of children not thinking that Christian is different but that he is just Christian!

Day 3 push thru the pain

Today Christian seemed to be sore by the faces he made during standing in his leg immobilizers and lifting weights. He worked thru it though and had a great therapy session. We start all mornings with stretching, massage, and weight lifting. We try to loosin up the legs so that we aren't fighting a lot of tightness.

Today he did well with standing, walking on the treadmill and walking in the gym. Afterwards Christian got to slide, lay in the ball pit (for the first time), and swing! Loved the slide and swing. Not so sure about the ball pit:)

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.