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!