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Tuesday, April 26, 2011

This is what Hardwork looks like *warning video is hard to watch*



Effort only fully releases its reward after a person refuses to quit. ~Napoleon Hill




That quote is perfect for James. He is the hardest working kid
I know. In fact he is the hardest working human I know. I know adults that when things get tough they are gone. But not my James. Is has endured so much his short 3 years. I know what we have gone through in our journey doesn't compare to some families experiences or other blogs I read. We are blessed in so many ways with the abilities that James has and I am so very grateful. These kids are amazing!!

James impressed me today and also broke my heart in to a million pieces. PT started good. We had a few "3 year old moments" but nothing that everyone goes through. He was working hard and doing his stretches. communication is sometimes an issue for James. He knows what he wants to say but sometimes during PT when it is difficult or he is frustrated the words just don't come fast enough. What sometimes does come out is frustrated screams. But he always over comes it and we are working with him to be able to access the words he needs when he needs them. This is a video of some of James' beginning of PT. You can also see his little camp buddy working just as hard! ( I got permission from his mother to video him as well 0
video

 The determination in this kids is a sight to behold. Such and sight that it shames me in my own willingness to say something is just too hard. I wish that I have a fraction of James determination



But sometimes it breaks my heart. Sometimes I want to grab James up and run as fast and I can and as far as I can from what is hurting him. My Mommy heart wants to protect him from the pain that his body is creating. I want to FIX it for him. But I know that I cant. I have to allow him to work through the pain and frustration so that he can come out the other side an independent and functioning person. All I can do is give him the tools to succeed and be there to comfort and catch him when he falls. But also there to pick him back up again and offer the encouragement to try again.. As I was watching James struggle today God spoke to my heart. Isnt this exactly what God does for us. I am sure He wants to "fix" all of our troubles and spare us from the pain of this worlds as well. The love that I have for my son is only but a grain of sand compared to how God loves His children. How I grieve him when I struggle but He is always there to pick me back up and offer encouragement to keep trying again.

THAT is why I was lead to take this quick video of James while he was struggling. It is very hard to watch so just know that it will break your heart because it does mine. But I am happy to say that he finished his part and made it through to the other side and stood TOTALLY INDEPENDENT for 2 seconds! No walker, canes or helping hands. JUST James. James was very proud of himself when he reached his goal (the play kitchen) and told me over and over again that he made it.


video

Monday, April 25, 2011

I LOVE the number 5!

Yep! That is right 5 is my new favorite number. I like the way it sounds. I think it is beautiful. But my absolute favorite part about the number 5 is counting to its beautiful name as I watch the physical therapist take her protective hands off my sons canes. We all hold our breath and start to count the unassisted steps James is taking with his canes!!! I thought that when I said 1 my heart was going to burst out of my chest, but 5???  I was on cloud nine.

James gave a sheepish '" Whoa!" and proceeded to take step after beautiful step. Now for those of you with typically developing children may not realize what all it takes for a step with a cane. First you have to understand that James doesn't really always know where he is in space, so he is working on keeping his balance. Then he has to be able to shift his weight WHILE keeping his balance. After that he must move the left cane then his rightt foot and then switch feet. All of this at the same time AND keep his legs strong and upright. It is very difficult and something that you and I do as easy as breathing in and out. James has to think about every motion and plan it out. So 5 is WONDERFUL. And of course I forgot my phone and/or camera! But I am sort of glad because I really got to soak in the moment.

I know I was a silly person calling everyone to talk about it, and some were off to another topic before I finished my sentence hardly but in our life this was BIG! So I think I posted it everywhere I could and text everyone I could think of ! LOL

The best part about it is that this time last year we were one month away from James having the SDR surgery. I was scared to death and even thought about cancelling the surgery a few time. James couldn't sit up well by himself he could barely hold himself in his walker independently and  his little legs scissored so badly that he would just step on himself and never go anywhere.

Not today! Today almost 11 months post SDR James is going everywhere he needs to go and talking to his peers eye to eye.  Today was a good day!

Sunday, April 24, 2011

I wonder?

Do you ever wonder if people listen to their own words that come out of their mouths? I sure do. I wonder frequently if they hear themselves and wish they could shove those words back inside. but are just too embarrassed to say "oops that didnt sound right". Maybe they realize, but figure they are out now so just go with it? Hummm???

 This really isnt directed at one particular person but instead a collage of several experiences I have had.  I find myself feeling embarrassed for the other person most of the time. I see that flash across their face when the wonder if the word "handicap" will offend me, Or as they reach a part of the sentence, and struggle with what word to use next to describe my son. I just stand there. Inside I want to share our whole life story. How James is a miracle even to be here at all. How we went through so many years of infertility treatments and about the children aches to hold but are waiting for us in heaven.  I know that will only make things worse because then they REALLY dont know what to say. So instead I just smile and usually nod as they label my son, ask if he is smart, or offer some advice about how their aunt twice removed had a "handicapped" child. *Sigh*

My favorite is when someone really wants to know what is "wrong" with James. Some come out and just ask that exact question, but most dance around the question in hopes that I will let it slip.  Other just stare. I have even had people tell me that James' condition is my fault because I must have not gotten good pre-natal care. If they only knew.

How to handle those looks or words even if well meaning? The quick answer is I dont know. God has some work to do with me in this area.  All I do know is that I pray for God to give me wisdom to use this journey He has set us on as a way to further his Kingdom. My fear is that the guilt Satan tries to tie me down  with is keeping me from seeing the openings to witness that God is giving me. I know that James has been given to Josh and I to raise for a reason. People are drawn to him where ever we go.  I watched James walk into church this morning and as I saw everyone staring at him in his walker I saw it from fresher eyes. The look of Joy they had to see this little guy work so hard to walk and  have such determination made me re evaluate my responses. So tonight my prayer is that tomorrow God will help me to be strong. To hold my tounge so that He can do work through me.

Not exactly an Easter post, I guess, but this is what is on my heart tonight. I am making more of an effort to get back to blogging my heart and not just updates and things I" think" people want to hear about.

Friday, April 22, 2011

Camp Snap shot of our Camp day * Picture Packed*

Thank you for everyone that made a comment to let me know you are out there. I really enjoy blogging about James and his journey post SDR and just our life frankly but figured that I if no one was reading it I would just go back to my diary or the personal family blog. BUT since there are those that do check and read my ramblings I will continue :-)

I especially love hearing that there are other Mom's of kiddos with CP. And for those of you considering the SDR please feel free to send me an email with any questions maryellen@lighthouselifeinpictures.com It was the BEST decision we ever made for James and we would do it all over again in a heartbeat!

Now on to bigger and better topics like WE CAME HOME....for the weekend! It was so good to see my house, bed, recliner, and dog! I missed that lab sooooo badly! Haven't seen hubby yet but he will top the list once I do :-) It also feels good to be in front of a computer instead of blogging on my phone in the RMHouse.

People have been asking about the Adeli suit and and the program that we are in, so I thought I would post some close up shots and talk a little bit about the program. Children's Hospital in Birmingham one of the very few places that are certified and trained to use the Adeli suit. I researched a few other programs but I liked Birmingham because they also incorporated los of other PT practices into the program and it is a very well rounded program . They use traditional PT with a little Conductive Education as well as the Adeli program. And I like that!  This picture below is James getting all suited up. The suit is very tight and gives a lot of sustained pressure which James doesn't always deal very with. You can see all the bungees that go every direction. They are specially placed just for James and his physical needs. For example James' left foot turns inward and so they place tighter  bungees on that leg to make his leg straight. The goals is to align the body perfectly and do repetitive PT to retrain the brain to the correct movements


 James is NOT a happy boy right here. The first 10 min in the suit for James is really rough. His PT tells me that kids react one way or the other. Either they love the pressure or they hate it. James hates it! I knew he would because he never likes harnesses and belts that are placed on him. To help him with that they use Vital Sounds integrated listening. You can see the headphones here. These are special modulated music CDs that provide a calming sensory input, and James responds well to it.
 See :-) This is after that first 10 mins when James is able to work thru the sensory issues that he has and focus on PT. Not sure if you can tell here but there are bungees at the ends of James toes that pull his heel cord these really made a big difference in his steps.
The other aspects of the camp are more traditional PT exercises just done in an intensive way. James has 3 solid hours of PT and 1 hour of OT everyday. The program is very intensive and by the end of the day James is exhausted. Here is a typical schedule of event for one day of camp

8:30-9:00-  Heat Pads, Stretching and Massage time
9:00- 10:00 - Strengthening and Core Activities and Big Ball Exercises


 10:00- 10:15 Snack
10:15- 11:15- Adeli Suit, Treadmill and Cage work or walking

11:15-11:30 Cool down and Walking to OT department
11:30- 12:30 OT Hour
12:30 End of Camp day!

Time to REST and gear up for the next day

Thursday, April 21, 2011

Thinking about letting the Blog go??

I dont think there is anyone that reads this anymore? It seems that everyone is happy with the quick updates on James facebook page and dont really care to get involved in the details. So I am thinking about stopping this blog all together and going back to my personal family blog. I havent had anyone comment here in over a month.

Wednesday, April 20, 2011

BooBoos and Crashes

So far this Camp has had its share of  booboo's! The first day James fell off a bench and hit his lip on his walker. He was with the OT at that time. People just dont realize how quickly he can fall. James is really strong but when he is startled or feels unsteady and starts to fall....he is going down! His tone kicks in and everything is pulled in. You or I would put our hands down to protect ourselves from hitting out face but James can do that yet. His arms draw in and is not pretty! It was a really nasty busted lip too. It even made his nose bleed. But he was such a trooper. Once we got him an ice pack he was ok.

Day #2's fall still has me shaken up!! James was put into a mobile prone stander similar to this one
Except James' stander was a older model that does not have that larger Red bar holding it up. But instead a smaller bar. I now know why they have improved this model because yesterday the weld that was hold James up broke and everything cam crashing down with James strapped inside of it. It was a VERY scary moment for everyone. Especially James! All I could think was he had broken his back because of the way he was bent. But he was only in the heap of metal for a second because I reached down and started pulling him out before I could even think about what just happened. He has some bruises on his back as you can see  a little bit here
You can see his SDR surgery scar and that the bruising is mainly below that , thank goodness! But there is a larger bruise below his scar where the pad that held him in the stander was. I sent this and another picture to Dr. Park and they told me that as long as the swelling goes down, he his playing fine , that they arent worried. So I feel better about that. And he IS playing just fine seems ok. The only other side affect from the fall is that he is pretty scared today. He is afraid to be in his walker very much but I hope that will fade soon! We shall see when we go back tomorrow for Camp day #3. Let pray that all the booboos are OVER for the duration of camp!

Tuesday, April 19, 2011

May Camp Day #2 LOTS of Pictures

I just wanted to share a BIG thank you to North Park Baptist for this sweet goodie bag waiting for us when we arrived Sunday. It really made my day!

 Camp day #2!! James and Ms. Corinne looking at the schedule or events for today. James is like his Mommy. We like to know the plan before jumping into anything.
 Ok THIS is the one of the "cages" you can see all the bungee cords hanging from it. What they do here is James will stand in the middle and they will connect bungees to his Suit. This allows him to be supported and the PT 's hand freedom so work on positions. It also only takes some of the weight from James and makes him hold 90% of himself up
 James has been doing some timed walking. Today he had to do it on an incline. You can see he is getting a little help from Ms. Corrine but he did most of the distance by himself. His little legs were just shaking at the end of it
 James is with Ms. Patrice here. She is actually a retired PT that has come back to do the evaluations. And she is AWESOME!! Basically if you combine your perfect idea of a grandmother with an Awesome PT you get Patrice!! James loved her and did everything she asked without one complaint.
 At the Ronald McDonald house were we are staying a group from a local church came and gave us some dinner music. James loved the harp.....or maybe he just loved the young ladies playing the harp!
 James thought this was really fun. It is like a standing bike. He was giggling the whole time! He is actually working on reciprocal movement here but shhhhhh dont tell him that!
 James and Isaiah getting their muscles all warmed up as they watch Bob the Builder.
 The next 2 images are James and Isaiah playing a relay game with each other. James was really fast!

 He isnt falling here I promise! He is working on his lateral muscles by reach for the floor and then touching Ms. Corrine's head.
 And here is the Adeli Suit! Click HERE for all the technical info on the suit and what exactly it does. James just knows he is not a fan as you can see by his face. Poor guy :-( It took about 15 min to get him into the suit, but hopefully it wont be that long since all the bungees are in place now. It is REALLY tight which James doesn't like. We were calling it the Buzz Lightyear suit and after about 10 min James told us he hate Buzz!
 A close up of the suit and a bit of James sad face
 But not to fear we ended on a FUN note! James loved the Koala swing and his session with Ms. Kathryn the OT. She did lots of nice relaxing things with James.

Monday, April 18, 2011

Camp Day 1

It was a great day. Lots of hard work and James and I are both super tired but it was great. As I said last night, I didnt even bring James wheelchair down with us. About 8am I was questioning my decision when I looked at everything I had to bring with us to Camp today. I had James in his bike, his walker, a set of quade canes, my purse and James backpack! It was a lots for the trek, but we did it and I thing the fresh air and motion of the bike really gave James a great warm up. I didnt not make him petal his bike. His feet where strapped in and I was pushing the bike by it handle. I didnt want to tire him out but just get his legs moving for Camp. As I was hiking with everything in toe. I was imagining new inventions for how to creat make shift back pack like carriers for equipment like this.

Once we arrived we walked into the center and there were 3 little 3 year old boy in walker just like James. You would think that we have seent his before as much Pt as we do but we just dont. The kids we see at home are either far less involved than James are far more involved. We dont know any kids that are at James level, so it was really nice to see them. James' face lit up and he instantly wanted to get out of his bike and into his walker with them to play. I was happy to help him do just that!

The camp day started at 830am. Today was mainly evaluations and seeing all what James could do. He was asked to do some timed walking and crawling, and a lot of beachmark tasks. I was happy to see that compared to last time we were at the camp James has really improved over what he could do in my eyes. I dont know the results of the evals until we leave but having seen many I pretty much know what they are scoring. His PT and I talked about my goals for the next 3 weeks. We are going to be focusing a lot on controling his walker and being able to be totally independant in it. As far as walking he is independant in it but he just cant quite turn it for corners and if he hit a wall he cant get himself out of it. We will also be working on that foot that is turning it. The suit will align his body perfectly so the idea is that we will re-train the muscles while he is in the suit.

Speaking of the suit.....the fitting went ok. He tolerated it for the most part. But James HATES putting on clothes much less a really form fitting suit that has about a hundred bungie cords going everywhere. So you can imagine how much he like it. I was proud of him though. He looked at his book and was quite patient for about 10 min of the 30 min process. And for James that is a big deal when it comes to things like this. I hope once we get the suit ON he will be ok with it. One of the OT goals for this camp cycle is to help James tolerate sustained pressure.

The RMDH has been great. Having a nicer and bigger room really has helped this time. A few of the people recognized James from August and were happy to see him. There is a new volunteer that James really likes. I like her too because she like sto take James to the playroom and read book with him while I eat. I REALLY like her a lot!!! Such a big help to have 2 seconds to eat during the day. Of course I can still see James from where I am.

James and I ended our day with a ice cream reward on the playground and several  trips down the slide. It was the first time that James and I really played side by side on a playground instead of me taking him to everything. It was a great way to end the day!

Sunday, April 17, 2011

Here we go again!

James and I have snuggled into the  Ronald McDonald house for another round of intensive physical therapy. This time will be a touch different. james will be doing the full spider Program. Which will include the special suit.

He will be doing 3 PT days and 2 OT days this time. Each day will be 4 hour sessions. I am excited to see what great new milestones he will achieve this time. Remember that last August he started the program not even able to hold himself up in his walker independantly and ended the 3 weeks taking independant steps in it. So now that he can walk independantly in his walker I cant wait to see what he will be doing at the end of these 3 weeks.

I am going to be twittering about all the fun things during his sessions. So follow us at meandj on twitter.Our romm here at the house is great. It is one of the big family rooms so this time we have room for James equipment AND walking ;-)

I am feeling pretty good afte my hernia surgery. trying to be careful about lifting.  Which means James is walking more. Not sure he is a fan but it is really making him stronger. In fact I didnt even bring his wheelchair with us.I felt it would be too much of a crutch for us both so I brought his bike instead. That means James will be petaling to camp every morning as a warm up.

That should do it for tonight. I am blogging with my phone so please excuse the typos .
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