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:)