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.