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. 

Being my friend is tough

This is a post that I have been thinking about writing for such a long time. About 4 years and  3 months to be exact. I have always been a pretty loyal person. when I befriend someone I tend to throw everything I have into the friendship.I grew up in a family that was very close and we were also very open about our lives and feelings. I am the same way with my friends. My sister is one that has always had a ton of friends around her, I'm not really like that. I usually have a lot of people close to me but only a few that I am truly close and intimate friends with. We laugh that for my sisters 13 birthday she wanted to invite just 40 of her "closet friends" haha I wish I was more like that.

I have learned that being my close friend is apparently difficult for most. In a perfect world and situation or even just a typical one, I think it would be easier, but I don't live that life. Play dates are hard to schedule around doctors appointments and physical therapy. Joining someone for a unscheduled lunch date is almost impossible because every second of my "free time" is clogged with playing catch up. And I know that is frustrating to people because it comes across that I am distant or don't care about developing relationships I think. If only people knew how dearly I crave other mother friendship.

Before James I would have never understood a post like this. I would have been just like everyone else and not truly understood how having a child with a disability controls your schedule and life at times. Other mom's  move from stage to stage and milestone to milestone, but we are usually stuck in the same stages of life for long periods of time. And as other kids develop physically, it leaves us behind and that means that I have less and less in common with those other moms. Yes we have many ares still in common and the friendship tries to hang on. I have discovered  that as those moms move on to T-ball , soccer, karate I am still talking about James being able to wiggle a toe and the friendship stops growing. When they say " hey lets take the kids to the park after school" I have to say know because I know that James will be to exhausted. I cant do a morning play date because we have physical therapy to go to and I can do one in the afternoon because James HAS to have a nap still at 4 years old. I have plan in advance things that they decided to do on a whim.
I causes the relationship to stall eventually because they just stop inviting us.  Sometimes it is because they feel sorry for me and eventually get so uncomfortable because they don't know what to say anymore. Sometimes they start to feel that I am so focused on my son I am being selfish by not spending time with them, but most of the time the friendship just dies on the vine because they have moved on to a different aspect of life and we are still working on the basics.

Don't get my wrong it isn't all them. I hold responsibility for this happening to. I am totally focused on James and his physical ability and I know it takes a very patient person to hang around for that. When your child needs extra help to do simple tasks it makes you think twice about the simplest things. Friends have called me to take the kids to play dates. Usually they are so sweet and try to think of a place that will have something that James can do...in their eyes. I try to put on a smile and then head to google to look up the location to see if they have ramps, and activities that James can to. When we get there the other kids run off to do the age appropriate things and I will take James to something he can play on. I cant sit with the moms and chat, because I have to physically help James move and play. So we end up being isolated even at a play date and that makes everyone so uncomfortable.

When it comes to my schedule, no one ever gets that. They just can comprehend 3 physical therapy appointments every week, and then school, doctors appointments, orthopedic appointments, IEP meetings, and stretching that we do. I added up a typical week's appointments and school and it came to 46.5 hours a week! No wonder it is hard to find time for friends when a 4 year old is working a full time job! And those are the typical days, the months that we have surgery or intensive pt camp.....gosh I hardly get a shower much less conversation that doesn't involve talking about heel-cords or spastic nerves. When you have to check out of the everyday life for months at a time it is hard on relationships.  I know that I sound like I am complaining about my life and I guess to a degree I am complaining about this aspect. I truly don't mean to. God has blessed me with the ability to do all these things for James and if others cant understand why I do all of this for my son, I cant fault them for distancing

What could have been

This week has been bitter sweet. Sweet because James is making such wonderful progress after his surgery. We are so very blessed that he is doing so well. But there is a little bit of sadness for me this week. Those of you that have been reading for a little while will remember that back on August I posted about another miscarriage that Josh and I suffered. Well this week is the due date week. I have struggled dealing with the emotions of losing this pregnancy and baby. I was doing well until I started to get in the mail infant formula and other promotional "gifts" from companies that I had signed up with online.

 I have 3 cans of infant formula lined up on my kitchen counter and every time I walk by them my heart hurts. But I just cant seem to move them out of sight. Weird I know, but I feel that the sadness of this loss is all I have left so I don't want to just brush it aside. Not sure if that is healthy thing but that is where I am right now.  I just think about how different our life would be if my body didn't betray me like this. We would be getting ready to welcome a brother or sister into the house for James and I think he would be so excited. But instead I am just left with cans of formula that will never be opened.

I am going to try and find some good use for them this week. I need to know that they will go to some use. Hopefully I can find a family that can use them or an organization that needs them. I just think it would fill this hole if I knew that they wont just sit on my counter and ruin.

3 weeks Post op

James is just flat out amazing. He is 19 days post surgery and is back to his feisty and active self. We are noticing little changes that are making HUGE changes in his walk and body. Now I am under no delusions that my son's feet are moving like a typically developing child's feet now but they are moving! That is the miracle in itself right there. After the SDR James could bend his legs and separate them at will. He even could start to move his feet and toes some. But after this PERC lengthening WOW he is wiggling and moving them more and more everyday. 

 He is now able to fully weight bear on his feet and he seems to have grown a foot!

 James is back in his walker and walking better than ever before. We are noticing things about his walk that we never saw before. Like we knew that his left foot tended to turn inward but now that everything is stretched we are seeing it more, but the BIG difference is that he can control it and I think with proper PT and strengthening he will correct it himself in time.

 His balance is better. He got this Plasma car for Christmas and he loved it, but he still couldnt quite stay on it. Now he is able to ride it and steer. So great to have an outside toy!!

 I have been doing a lot of home PT with James. St. Louis gave us a home program and we are really trying our best to follow it. But some of the exercises are just boring so I have been trying to make them a little more exciting. This is a classroom game called Crocodile Hop. It has several way to play and James really thinks it is a lot of fun. I love that I can hide PT with it!

 These arent very fun looking pictures but I wanted to show you how James scars are healing. The top is the Hamstring cut and the scar in the calf is where they did the gastrocs

Here is James walking with his walker. See those heel strikes I have been talking about. The last part of the video is better because he gets off the hill he was on and pays attention to his feet. 

 BEST of all!!! James has started to take some steps with his canes. We are super excited about this because it is just another step to taking those independent steps one day. He stood with his canes for 2 whole minutes before getting scared and asking for help. And he took 4 steps with his canes before he realized that I had let go. Progress is always welcome in this house!!

Little Movements that move mountains

If you are a parent of a child with some special needs you understand my title. In parenting we get so focused on those "big" childhood development milestones, but one of the perks to being a mom with a kid like James is that I get to slow down and enjoy the little things. Like 2 weeks ago my son wasn't able to kick below the knee, but today while eating dinner he started kicking his legs. It was such a beautiful sight.

Here it is!

James is 8 days post op from his PERC surgery, and we are seeing so many little things that are so HUGE. Everyday James is wiggling his toes more and more. He is also now able to move his foot up and down. Today he started back walking in his walker, and for the first time he has a HEEL STRIKE!! I bet some of you never thought about how your heel hits the ground first when you walk. Well for a kids like James it never has. We had been trying to teach him this but when you can't lift your foot up that is a hard thing to do. But not anymore :-) James got into his walker for the first time tonight and that was the first thing I noticed, a heel strike. He is still very hesitant and worried about moving in a way that is going to hurt but that is fading and he is still pretty sore. We have really be working on doing things with a good attitude and he is starting to grasp that concept more and more.

James works best with a end goal in sight. He likes to know what he has to do to make the exercises be over....who doesn't right! So I have been trying to make his home exercises a little more like how I did when I taught kindergarten. I made centers and set a timer. I took each exercise that I wanted him to do and made it a fun activity ( as fun as I could) and put them through out the living room in a circle. I set the timer for 30 mins and sad that when the timer went off we were finished. So we would do each center and it actually worked. He liked having a clear goal of what I wanted him to do and also a stopping point. I knew he understood when we got to the last center and he said "Look Mommy the last center and almost finished" I did his warm up as I was explaining the centers so he thought we were just talking but I was stretching him....sneaky Mommy!

I am just thrilled with his progress so far, and I know it will only get better. Please be thankful for your children's little movements. How I wish I could give James my legs and make all this go away, but I cant do that for him. Instead I will do all that I can to make sure we celebrate each little movement because I know they will lead him to move mountains!!