last day

Well we are almost done here in Sikeston. I have to say this has been one of the more stressful intensives we've done due to the fact that we were "starting over" with Christian's body as far as standing and walking and I have a 1 year old and 14 wks pregnant...needless to say that adds a little more to the plate. I would also say this has been one of the more umm rewarding (i guess that's the word) visits. I saw Christian go from the first week of barely standing to this last week of totally pushing up and standing and walking. He and Brandy have worked so hard. I am very proud of him! He still has a ways to go but at least now I'm not worried that he may never get it figured out.

I don't know what I would do without the opportunity to come here and have Christian participate in this intense physical therapy. It makes a world of difference. The pt is able to get a real look at him over the 3 hours a day/3 week session. It also gives her time to see what needs to be worked on and try out different equipment, braces, and techniques to get him doing what he needs to do. I am glad that we got the baclofin pump and are on our way back to better walking.

VIDEOS -these are from these last couple of days work.

THANK YOU- to my mom,dad, granny for all of your help with Bryant, laundry, meals, your house and much more!!!! To everyone who participated in the Dodging to make a Difference Tournament! This fundraiser makes it possible for us to come to this!! My husband who has to miss us for 3 weeks except for visits on the weekends! All who have been praying for Christians' health and progress!!

Week 3 of intense pt feb 2012

Sorry I haven't done a good job keeping up this time around. Week 2 christian had a good progress day every other day. I didn't feel like I had anything new to say. I think it was thursday that he had a great walking day. We figured out a great set up for his arms. The problem is his left arm is usually strapped down since he doesn't hold on. Lefty not a problem. Now right arm is tricky-he doesn't want it strapped down but won't hold on to his handle the whole time. When he does he looks great and stands up straight. AFter awhile he wants to bite it or just wonder around with it:) Anyways we figured it out.

So this weekend (last weekend here) christian did some great sit to stands at home. I feel like he's really gotten stronger and put the pieces together. Far from perfect but using his butt muscles more and just not squeezing his legs together as much to stand. I will try to get video on here.

The picture of C laying down with what looks like a palm pilot and then a round device on his stomach--is---how they adjust hip baclofin pump. The round thing on his stomach is magnetic i think? it is just on top of where his pump is on the inside of him. Then the handheld device tells the doctor it is connected and reads what dosage he's at and the doctor can then adjust up or down...pretty cool. Also the videos are from the week after he had the pump put in. I'm just getting these on here.

intense pt Feb 2012

Starting over is never fun:) I say that to say this--so Christian had his baclofen pump installed Jan 4Th and we are now here in Sikeston to do his intense physical therapy program. This worked out perfectly as far as timeline with getting the pump. He was able to have enough time to heal and then come here to get him familiar with using his "new" body. I say "new" because as I've explained before he was used to using his body one way to function (walk, sit, stand..) and now he has to learn a different way. I would say more correct way to do those things.

Today was day 7 of therapy. The first week was well let's just be honest...for me it was a struggle to watch Christian not be able to do things like stand and walk as well as he used to. And again this is because he's working with a different body not because of his therapist or anything like that. Actually I feel like her job is harder because now she is having to rethink how to teach Christian to use his new body. This means finding new motivators, new techniques. I have to admit the first week was kind of a bummer for me considering I'm use to seeing him differently. I guess what I mean is he didn't have to struggle so much. Basically Christian has no strength in his butt muscles so when he stands he just sticks his butt out and doesn't use them to straighten himself up. I think it's important to say that everyday of therapy or things we do are not always great. It's easy to put the highlights on here and leave out the low lights but that's not realistic. Sometimes raising a child with special needs is frustrating, sad, and hardwork. That's just the reality of it.

On day 3 we saw better standing...meaning standing up straighter and pushing up more on his own. Day 4,5 was even better as far as standing and pushing the weights with his legs. Day 5 he did a little walking. Today day 7 we did mostly all walking. I was so excited for him!! He used his pacer walker. I don't have video because I was helping. sorry. I have video of some other things that he did. He is mostly working on strengthening his legs and butt, standing, and walking.

THANK YOU-to all of those who contributed to getting Christian here to this therapy program. We appreciate it more than you'll ever know.

Robyn

you never know

Well we are 2 weeks out from surgery and overall it hasn't been bad. We are going to work on getting his legs going and pray for the seizures to stop flaring up.

We stayed at the Ronald McDonald house which has been wonderful. It's a year old and very nice. Groups come in every night and make dinner for the house. This is such a treat for the parents staying here. Most of their kids are preemie babies in the NICU, having surgeries, or sick in the hospital. There are families from all over....the Caribbean, Belize, Illinois:) The fact that you don't have to worry about eating out or getting food from the store is so nice. Each room has a daily chore, you do your own laundry, and clean your room. I've met some parents who have kids with cerebral palsy like Christian. It's been nice to talk to them. A couple of moms had multiples and lost some of the babies. You never know who has been thru what..

Ranken Jordan is an amazing facility. It is set up as a pediatric rehab hospital. There are infant-23yr olds living there. They have a 24/7 staff of nurses, doctors, aides, kitchen staff, and therapists. Not to mention tons of volunteers! During our week there, I noticed that the kids who were about 5th grade to college age were either there for reasons of medical need due to conditions like Christians (CP, neurological issues) that they were born with or some were there because of injuries due to accidents. I noticed one boy and mom that arrived about our 3rd day. He seemed to be about 12. He had been in an accident(don't' know what kind). He had a long scar on his shaved head and half his skull was missing. He had a couple of machines attached to his wheelchair which was tilted for his sitting position. His mom carried a bag with his medical necessities. He was in music therapy with us and enjoyed the piano. He would tap it with 2 fingers. I never heard him talk. His mom seemed quite and took everything in as the therapists talked and helped her son. At some point a therapist asked what he liked to do and his mom said "he used to like building things with legos...he was good at that" You could feel the sad tone of the way she knew she was talking in past tense. I thought how incredibly difficult to one day have that son and then another day be thrown in to this medical world and start rebuilding your son's new life. I imagined the other parents who had walked thru those doors..the ones whose daughter became paralyzed after a diving accident or whose 5yr old couldn't walk or talk because someone broad sided their vehicle (true stories). I also know that there are amazing things done at Rankin Jordan with kids to regain walking, sitting, talking,.....

Just remember to be thankful for everyday with your kids and not take their abilities for granted! And don't sweat (or complain about)the small stuff.

Pictures-these are from the past yr. the one with c in a yellow shirt is the first time i got them together while c is sitting by himself (huge accomplishment)

ready to go home

Well Iofficially hit my point of-i want to go home-on friday. Christian had seizure that morning so after that he didn't do too hot in ot since he was tired. They had to fix his back brace because it was digging in his ribs while sitting. And I"m just overall ready to be home where everything is where it is and easy access. We then had to skip nap to go to the kidney doctor for 6 month check up. He still has kidney stones due to the ketogenic diet (which helps control seizures). Actually he passed several thursday night. Nothing new to do, they just monitor his kidneys. We would have to stop the diet to stop the stones.

He did pretty good that afternoon in pt. the picture is of him sitting with leg braces on. These give his hamstrings a really good stretch. Before the pump he could not have done this. He did some pretty good standing also. I tried to get videos on here but somethings not working.

day 7,8 and matters of the heart

Every day gets a little better-bruising is down, times of uncomfortableness is more spread out, rash from tape is better,happier! In OT, he is doing some great sitting with little assistance, working on grasping puzzle pieces, switch work-which mean using a switch to operate a toy and then adding another switch that does nothing. He has to figure out that only the 1 operates the toy. He definitely recalls by memory where the correct switch is. Sometimes gets stuck on the one on his right side. He also got to do some swinging. loved!!!

In PT, he did some standing which has gotten better. He wasn't wanting to stand at all until 2 days ago. He is so used to using his "tone" to stand and we took that away. Now he has to build up the muscles and allow the brain and body to get used to standing without tone. Tried walking in a walker but got nothing from that. He is tolerating being in his stander so that's good!

There are 2 other girls in the day program and so we eat lunch together and talk which is so fun. They are 9 and 12. Such personalities!!! One of them talks about Bryant everyday. She met him last week. They like to talk to Christian too! I will miss them. The 12 yr old has the same OT as Christian and I said she gave me some good ideas to do at home with him. She said"I'm glad my momma don't come here" Luv it.

MATTER OF THE HEART:
Anytime I go away for things like this I just know that there will be people that I run in to that I'm supposed to-divine appointment is what I like to call it. It almost excites me! I tried to be aware of that and not let opportunities for God to use me pass me by. So it happened in the kitchen...A young couple had their first son early and he is in the NICU here and has a heart defect. So she's telling me about it and I just know that this is where I'm supposed to share what God did for Christian's heart...in my mind I'm thinking ok this is it! And so I shared how Christian was born with a heart defect and the doctor said it would never fix itself and how at 3 months old we went to the doctor for our monthly visit and they did an echo and the technician says "you said he had ebsteins anamoly?" and i say yes. And at that moment you could see this look on her face like something didn't match up. She continues and finishes and we go wait for the doctor. He comes in and says "I don't know how to explain this but his heart is perfect. There's nothing wrong with it anymore. This has never happened." And I say "well we believe in the power of prayer". This was just one of our miracles in the last 5 yrs. And so I told this young mom to just know that God is working and we will be praying for him! I think 5 yrs ago God knew this "matters of the heart" kitchen encounter would happen:) We still have the drawing that the doctor gave us explaining his heart condition. It reminds me that nothing is too big for Him and He knows way more than we do and the whys of it all. Also a funny fact is that on paper doctors would look at his heart defect he was born with and say "that doesn't really match up with the other stuff that happened". And then they always say "so he doesn't have this anymore? "no" Did he have surgery? "no". :)))

day 6 pump

I didn't post over the weekend since we didn't do any therpy and nothing new was happening. Christian did fine over the weekend though. He even stood up 4 times for me.

Today he started occupational therapy (ot) and physical therapy(pt) at Ranken Jordan. In OT he worked on the swing, putting puzzle pieces in place with a pincer grasp, switch work with the bubble column. In PT, we had to get his back brace adjusted because of the way it was hitting him at his legs and the pump. Besides that he was in the stander for 15 mins and did great. He did not act like he was in pain during any of these activities. The only downside to today is that Christian is allergic to the tape that is used to cover his bandage. He has a rash all over his chest from it. They changed tapes today. The incision is healing nicely, swelling and bruising has gone down too.

One of the volunteers has a service dog and Christian pets him everyday. The minute he touches him he starts verbalizing and gets so excited! It is amazing what animals can do.