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Monday, September 27, 2010

Did you think I had left you??

Well I didn't :-) James and I are still here, but every time I sit down to blog about what is going on I loose all my words. The past few weeks since we have been home from the therapy camp James has started to walk independently with his walker ( yippie!!) , we have moved to a new home, and I opened a new photography studio.

These were things that really weren't planned to happen all together but that is they way they fell. i have been doing my best just to keep my head above water with everything that has been going on. I haven't been doing such a good job. In fact last week I passed out at one of James Pt sessions and for the greater part of the day it was thought that I had had a stroke.

NICE!! A 32 year old stroke victim. That is a title that I do not want behind my name. So this weekend I have been really reflecting on what truly is important and what isnt. I have always enjoyed being busy and I don't think that will change. the thing that HAS to change is taking time for myself. I have always had good reason for not taking that time. They are great excuses, but wanna know the truth of the matter? If I am busy I cant be sad. If my days are filled with "To Do" lists I don't notice all those mothers in the grocery store that are complaining how they have to chase their children up and down the aisles. If I am busy I can keep from yelling at them that they should be praising God that their children are alive and running!!

See, all of you that think I am some sort of "Super Mom", now can see that I am just a tired mom just trying to hold it together. I am beyond grateful that I even have James. Every time this year ( around James' birthday) I start to reflect on just how easily I could not have James. God has blessed me so much with the ability to raise James on this side of heaven and I feel like I should be in constant praise for that. I try to be but the Devil knows just where to attack me.

So the bottom line to all that is that I am going to be doing some hard looking at my daily schedule as well as some of the activities that can survive without my help. Not everyone is going to be happy with me but I have got to be around for James and my husband for many many more years. The path I am on wont get me there.

Thursday, September 2, 2010

We made IT!!

Well folks I am happy to say that James and I have survived 3 weeks of living away from home. James has survived not only that but VERY intensive physical therapy each of those days. We have celebrated a birthday, gotten hives, grieved with fellow housemates over the loss of children and met some friends that we will hopefully have for a lifetime. It has been an adventure and I am very happy we did it. James has made great progress and I am so proud of him.

I think I have told him so much how proud I am of him because everytime he finishes a task he will now proclaim " I did IT! I proud of you!" I am so glad that he understands that Mommy is alway in his corner cheering. Even if i am asking him to work so very hard his little legs are shaking I am cheering him on the whole time. How I wish with every fiber of my being that I could just "fix" all this stress he has to go through, but I truly do feel that from this James will do great things. God has a plan for this kid. I am just honored I get to watch it unfold!!

So lets talk a little bit about todays therapy session. The first 30 mins I came SO close to just grabbing my baby up and driving home. He was clingy and cried as I watched hives break out all over his little body. It BROKE MY HEART!! But then during a little Mommy break he asked for some of my ice. I gave him some, and it calmed him down. He kept asking for more and I just gave it to him. Well the therapist started working with him and ijust kept pumping the ice in his mouth because it wasnt crying. He walked 10 min on the treamill, no crying...more ice. He knee walked to his canes, no crying....more ice. He walk across the room using the best steps he has used so far, no crying....... give this child as much ice and he wants!!!!

The PT brought in one of the ladies that specializes in sensory issues. She explained to me that James is sensory seeking ( which we knew) After his surgery and the nerves were cut his little nervous system has taken quite I shock. And because of this his sensory system ( part of the nervous) is also in shock and trying to calm its self. I had known this because St. Louis talked to us about it before surgery. Well we have tried weighted vest and lots of other things but apparently James need the oral input. And the hard crunching of the ice is giving him the vibrations in his TMJ bone that is soothing to him. And then causes him to be calmer and more himself. It was like someone has flipped a switch with James today. He was his happy and calm self during the rest of his therapy. He actually got some of the best steps in of the 3 weeks. It was amazing and what "chompin" on ice did for him today!!

Wednesday, September 1, 2010

Hives and Homesickness!

James and I are ready to get back home. He is for sure! I am sad to say that his little body is starting to show signs of stress in the form of hives. We got up and ready like normal today. We went over to the therapy office and they put James down on the heating pads getting ready for his stretches.

As he was playing, I noticed a few welps on his upper arm. I thought they were bub bites but when I touched them they were very hot and then I noticed there were more starting to pop up. We all started to look him over ( he did not like this) and discovered that he was covered with red hives. He had gotten so very upset while we were trying to look at the hives that I decided we needed to cut the therapy day short.

I took him back to our room and gave him a dose of benadryl. After about an hour the hives started to fade. I called our pediatrician and our family Dr. for thier advise. Both agreed that as long as he isnt having any other symptoms then benadryl is really all the ER would do anyway. We James and I took a nap and rested for the afternoon. I discovered that I missed a cupcake delivery from a friend that came to visit and was turned away by the Ronald McDonald house staff, and that was sad to find out. I sure could have used the company of a friendly face today, but oh well.

So when James woke up the hices were gone but did come back this afternoon. And they were worse that before. I did the mas dose of benadryl the Dr. said I could give him. There was a Dr. a the therapy center that was rounding and he took a look. He said that they are stress hive. This really makes me sad to know that I an causing my child so much stress that he is breakingout in hives.

So tonight I am a little sad. I am sad that James is under so much stress and I feel to blame. I am left with some questions tonight that are keeping me from sleeping. Is my desire to see James walk causing him harm? And I hurting the one human being that I honestly would jump infront of a bus for?? And I trying to "fix" him when he really isnt broken??

I can honestly say that I try to do for James the best I know how. He is such a joy to be around but that joy had been gone these 3 weeks. I havent heard him truly laugh in 2 weeks. My heart is just broken right because I miss is happyness.

I am not only homesick for my husband and life, but I am homesick for my sweet James. I have been trying my best to get him to play and do fun things. And he will have fun but it just isnt like he does when we are home. At home his joy is contagious to everyone around him and here I just feel that people see him as the cranky 2 year old. At home when people talk to him he lights up and tells them a joke. Here he yells and hits his head on the back of his chair.

I miss him!
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