Weekend with Daddy

This weekend Josh (daddy) got to come down and spend the weekend with us here at the Ronald McDonal House. James and I both really enjoyed having our whole family together. We took James to the McWane Science center. It is a hands on Children's Museum. We had a really good time. I took a little picture of James and his buddy Cliff playing with the Leap pad. You can see that they are so much a like. It has been great for James to have a friend that is physically just like him. No one gets left behind!

Prayer Request for James

Those that know James know that he is the most loving and outgoing little boy on the planet. He is funny and talkitive and just a joy. But when he gets into a physical therapy situation that doesn't always shine through and it really effects his progress. I don't know if it is frustration or just plain stubborness. But what I do know is it isn't my James.

So my prayer request is that we all band together and pray for James and whatever is going on in his little head that is causing this. If it is pain or fear please pray that God will reveal that to us so that we can address it and help him. If it is behavior , please pray that God will show me how to disipline and guide James to a more appropriate behavior.

I do have to say that it is MUCH better than in times past and the therapist here are so wonderful to work with. But I don't feel he is getting the same level of therapy that the other children because of his behavior. And that is not the therapist fault but it does bother me. It is disturbing to see your child go into himself and for others to not be able to see the great kid that he really is.

James is working so hard and we are seeing good results. Josh will be here tonight and I thinking seeing Daddy will do us ALL good :-) Josh gets to stay the whole weekend and that is going to be such a big help.

Spider Camp week #1 in the books

 James and Cliff headed into PT for the day. James favorite activity is the "horse" they call it. It is a seat that rides like a horse  and James had to sit up ans straight as possible. He loves it cause he gets to push the button and go fast!

 The Adeli suit is hard to get used to but Bowling with a giant blue ball makes it a little more fun.

 James first tball game and he had a great time doing it. He loved hitting the ball and didnt want to stop. Those of you that know James, know that he never wants to stop anything that is fun. But his sweet little heat loves to share he just needs a little extra help with those transitions.

 So we LOVE the Ronald McDonald house. It allows up to come and not have to worry about a huge hotel bill while we are here. They feed us and we always meet great friends. The rooms are clean but they dont have bathtubs. That can be tough for a kid that cant stand on his own and the thought of just putting him on a shower floor grosses me out to no end! So to the Grandmommy to the rescue. She found us a blow up bathtub and shipped it to us. It is for a lot smaller kiddos but it does the trick.

Its that time again. Time for James to work his little tushie off and build muscle and strength. We are here for the Spider Program here at Children's in Birmingham AL. James has done really well so far. He is still James and makes his therapist work hard as well but he is doing better every time we come. I just cant say enough good things about this program and there therapist here and how they work every minute of our time to give James the most bang  for our therapy buck. This is James in the Spider cage. The bungees allow James to feel what it is like to stand under his own weight on his own and preform tasks that other wise he couldn't do.

 Here is James on the treadmill int he Adeli Suit. I was so proud at how he handled the sensory input of the suit this time.

 James got to walk the therapy dog down the hall way

 Good look at the suit. All those bungees have a purpose. The put the body in correct alignment.

 James practicing with his canes. You can see Cliff, James's buddy in the background getting his "Buzz Lightyear suit" on too

 He found a scooter board and OFF he goes!!

 Cliff and James playing swing basketball

 The Spider Program team with James and Cliff

 How many physical therapist does it take to walk 2 little boys down a hallway? (sounds like the beginning of a bad joke doesn it)

 Back at the Ronald McDonald house. James' favorite thing to do is the computer.

 I LOVE a therapist that will do whatever it takes to make James have fun walking down the hall. Mr Andrew was racing James

 Lest you think it is ALL work and no play....

 Walker parking at the Ronal McDonald house! Cliff is staying here too. You can jump over to his story and the blog his Mommy does here Cliff's Story

Here we go again!

James and I are off on another adventure to Children's in Birmingham. We are leaving in the morning but poor Josh has to stay home and go to work :-( boooo! He will get to come visit some which will be nice. James will be participating int he Spider Program that Children's does. It is a mix of the Adeli suit, Conductive Education therapy and traditional physical therapy....basically that is the best way I can describe it. Now sure if the therapist would describe it like that but from what we have experience that is what it is. All I know is that it works, and has transformed James. He comes out of the program stronger with much more confidence. The down side for use is that it is really hard on James. The therapy is very intense and usually pushing him to his sensory limit. BUT every time we go he gets better and better. I know he is on good hands and they have lots of tricks up their PT sleeves that help James overcome any sensory issues that arise. But please pray that James will be the ray of sunshine that I know he can be. I want them to see the sweet James that everyone else sees on a day to day bases...not the devil child that he can be when he is overwhelmed LOL

I will be blogging about his progress and post lots of pictures of course!!

If today were different

If today was different, what would it look like? Would I be holding a new born baby girl or another beautiful baby boy?

If today were different, would you have your daddy's long eyelashes?

If today were different, would you use your tiny fingers to hold tightly onto my thumb?

If today were different, would I be rocking you to sleep in my arms and smell the sweetness of your skin?

If today were different, would James be a big brother?

But today isnt different, and my arms ache for you. A child that no one else even remembers existed.  

A child that I never even knew.

A child that was wanted and loved the second we first heard your heartbeat. Even for that brief period of time that you were with us. A child that I had dreams for even if you were just with us for 14 weeks.

Today is the same day on the calendar that I penciled in the date that you were supposed to arrive. 

Today is supposed to be different.

But it isnt.

Its that time again and CP Connection

Me and my little traveling buddy are off again.

 I will be taking him to Birmingham for the month of Feb for another intensive physical therapy program. We planned this to go a long with his post-op rehab and I am excited to see the changes that they see and also the progress he will make with this very intensive program.

 He always comes home a changed little boy. It is really hard to check out of regular life and be away from the hubby for so very long but I know it is worth it all in the end. We have learned to make the Ronald McDonald house as much home as we can and he will have a new friend that is going through the camp the same time frame. I know that will be fun for him. And Josh and I have committed to do everything we can to give James the best chance in life. I mean look at this face! How can you not route for him!! hehe

James got new braces...yes again! We just cant seem to find that perfect combo. A lot of that is because he keeps improving and changing. We started with DAFO #4 but that was before his SDR. After the SDR they wanted to taller version which is a DAFO #3 but we decided to go with a turbo AFO just because I like the ease of how they go on. NOW we have the craziest combo I could come up with LOL. I am so glad I have an orthotist that is willing to listen to me and keep trying. The AFO that is pictured below is a combo of a TURBO ( which means is comes in 2 pieces) and then I had them add a hinge and a stability strap. I did this because we had on therapist that wanted the hinge for freedom of movement but another therapist wanted the solid afo.SO I compromised for them and had a stability strap added so that we loosen it and the hinge works but if we tighten it then it makes the afo like a solid. I also had them cast the tall part of the afo over a DAFO #4 which is what St. Louis wanted us to get. so really it is a 4 in 1 afo! I have to say I am pretty proud that I got all that in one. And so far they are working really well. Making everything doctor and therapist happy is like juggling bowling balls!

 The other day it was warm enough to get out and do a little bike riding. This was the first time James had been on his bike since before his surgery. I was really excited to see that he could pedal so much better. 

 Daddy and James playing Guitar hero. James told me that he totally rocks!

 Check out that hamstring stretch!!

 Just a typical grocery run. James doesnt fit in the seat anymore. Not that he ever come sit in it well. PLEASE support this lady that has made a cart for kids like James http://carolinescart.com/

I am participating in a CP Connection.