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.

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!!

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!

McWane Center and other tid bits!!

We have officially entered the LAST week of therapy camp, and I am soooo ready. Dont get me wrong I have so enjoyed seeing James progress so much here, and the Ronald McDonald house has made this long stay away from my family less sad. But I am ready to be back on my own bed, see my husband, my dog, my cat and my very own stuff! I know that James is ready to get back home too. He just isnt himself here. He is still sweet for the most part but boy oh boy does he have a short fuse.

Tonight there were a LOT of people in the dining room ( the dinner was YUMMY) and it was noisy. James just doesnt handle that level of noise very well. He played with the kids for a bit but we had to leave and let him eat in the room because he just couldnt take it anymore. It is hard to see him get so upset and overwhelmed by it all. So I know he will be happy to be back home. Even if it will only be short lived. ( Ill get to that later)

I took James to the McWane center today. The RMH gives the families a pass for the zoo and McWane center. How nice is THAT!! I was concerned that there wouldnt really be much for James to do , but I was suprised that he was able to participate in a lot of activities. He LOVED that there were buttons everywhere and he could push anything. It is a hands on kids science center for those of you that dont know. We had never been and I really want to come back with Josh and spend the day. I will post the pictures I took later.

Tomorrow we will begin our last week here at camp and it is a little bitter sweet. James has progressed SO much that I just cant wait to show everyone how much stronger he is getting. We still have a long road of hard work to go before he is walking independantly but he is on his way! We have amde such great friends here at the RMH. I have enjoyed our dinners together and just getting to know each other. We have heard some very sad things and there have been some families that have lost their children while we were here as well. This house is not a vacation spot but it is safe, beautiful and a home a way from home when you need a home life envoronment the most. I have really enjoyed it here. And when one of the ladies asked me to tell James' story for the RMH newsletter I was more that happy to do so. I will never look at those little donation boxes at McDonald the same. So plan to hear some ways that YOU can help me give back to our home for the last 3 weeks.

Well my little man is sound asleep and I am going to do a little work before I join him. I will let you know how tomorrow goes!!

Turning 32 at the Ronald McDonald Hose

As a kids McDonald parties were really fun. You got to eat cake and chicken nuggets, sit in a big throne chair and play in the ball pit. WELLLL having an adult birthday at the Ronald McDonald house isn't as much fun come to find out. No ball pit to play in, the "throne" isn't as regal as one would wish for and my chicken nuggets got stolen!!

Yep that pretty much sums it up for today. My Mom, Jenda and the kids come down to see me today. That was GREAT! I needed to see some faces of people I loved around. I have made some great friends here but I am officially homesick. So it was good to have people that love me around. Mom brought me her Pot Roast which I usually request for my birthday dinner. And they brought me a nice big chocolate cake. They didn't get here until a little later in the afternoon so James was a little in the cranky and tired side. Jenda took the kids to her mothers and mom and I got to hang out. James had to lay down for a nap ( so did mom hehehe) . It was nice just to be in the room with her again.

So after they left, James took a good long nap. When he got up I was ready to go downstairs and eat my yummy birthday food. But it was not meant to be. Someone decided that it looked toooooooo yummy and they took it. I had it labeled and it was sitting right beside my bin. But I guess they were SO hungry that they lost all compassion and ate it anyway. SIGH!! Since James had napped so long we missed the house dinner, so I had to walk down to Moe's and get us something to eat.

Did you know that Moe's wont take your credit card if you don't have your ID with you??? I didn't but I do now. I keep my card in my little ID badge they gave us at the house with our room keys so I don't have to carry my purse around. But I don't have my license with it. And Moe's wouldn't let me pay unless I had my ID so I had enough cash to buy James' food but I had to leave my nice big black bean burrito there :-( SIGH again!

Well here I am in my room tonight and I have decided that I am declaring a Birthday DO OVER!! I refuse to turn another year older because this birthday just doesn't count. Yep that is what we will do! HAHA! You think I can just refuse to get older but keep the cake part???

Camps days #6 and #7

Going to combine since I forgot to post yesterday! oops! Well if you have been following on James facebook page, I am sure you saw the abundance of videos that I posted yesterday. James had a great session on Wednesday. He had an early bedtime and I have discovered that a little Baby Advil is in order for out little man. He is sore and that seems to get him through the soreness. His daddy also surprised us during therapy with a visit!! James and I were very excited. Josh got to see in person James walking in his canes. He loved it!!

After therapy, Josh and James took a nap and I took a little break from having a 2 year old attached to me 24/7. One of the housemates here at the house discovered that I was a photographer for Now I Lay Me Down to Sleep and she asked me to come and take pictures of their son. God has given them the gift of time but sweet little C's time here on this side of heaven is nearing a close and I was happy to be able to offer my services to his family. I ask that you pray for this sweet family, and pray tot he God of miracles that His will be done. We know that he promises healing and I know this family longs for that healing to be on this side of heaven.

But after my session, I went over and sat by myself in the living room . It was nice to just relax a bit. I went and woke up the boys after a few minutes and we all came down and had dinner. Josh got James to eat an entire piece of pizza! And everyone was so shocked that one of the other moms actually took a picture of it LOL! Daddy has the magic touch I guess ;-) It was sad to see Josh leave but I am glad he could come down.

Today was another successful day at camp. James had a few meltdown with frustration but they were eased by the new listening therapy program that we started. It is specialized music that plays at a specific frequency and modulates to match brain wave patterns. It is used for a variety of sensory issues, but the therapist here use it on post rhisotomy kids that are having some sensory issues like James. We think he is getting overwhelmed when the gym gets crowded and loud. But when when we put the special headphones on he calms down. James has always been very musical and this is right up his alley. He isn't a great fan of the headphones but he asks for the music. Or as he calls it "My music" So we are going to use it for the rest of camp time and see what difference it makes. Anything that will help his PT goes smoother I am ALL for.

I did a Mommy no no today!! I asked the therapist what she saw and James' walking chances. YIKES!! This is a no no because without fail the therapist will either tell you they don't have a crystal ball or give you a VERY low ball answer that will crush your spirit. So I have learned to words these questions very carefully. I want an honest answer but I know they they cant see the future either. So I asked what she saw ans James' strengths in his potential to walk. I was shocked at her answer. She told me that she thought James would be walking with his canes ( if we keep up the hard work) in 3- 6 months. I think she expected me to be disappointed but I know there isn't a magic "fix James pill" and this answer was exciting to me!!

St. Louis told us that they saw James being able to use canes by kindergarten and taking independent steps by age 8. And just 9 week he is already in canes and doing really well with them!! I am thrilled with that!! So it has been a great last 2 days of camp. We are also going to go on Monday just so that James sticks with his routine. We think the change was part of the cause for the meltdown Tuesday. So instead of just handing out Monday we will go in and just watch int he stander for a bit.

I think that is it for tonight! I am going to try and get some sleep tonight

WHO sucked all the happy from the room??

I don't know who did it, but they need to bring it back right now. James has been just awful this morning. I do not usually use those words to describe my sweet baby boy BUT today I do. He woke up screaming this morning after not going to sleep until almost 11pm, and then he refused to eat. That has been par for the course here at the house. If you have been reading my blog very long you know that eating has always been a struggle for James. He likes to live on the edge of the growth chart to give me something else to worry about ;-)

But today he took an extra dose of unhappy and then proceeded to share the "love" with everyone he came in contact with. Normally people that meet James talk about how he is the SWEETEST child on the planet. Always has a smile on his face and is always laughing. Not today though! We walked over to therapy camp after a few time-outs along the way for hitting. Therapy actually started well. He did great during the heat and massage portion ( I would too) But as soon as he was asked to do any stretches or work it was over. The pt was great with him. She was firm but not overly so. We both tried to distract him and make it as fun as we could but after he reached out and bit the pt I knew nothing was going to work except a nap.

He got a few timeouts and they even tried to change therapist to see if he would respond better. He bit that one too :-( I was SOOOOO mortified! Those of you that know me know that a ill mannered child is probably one of my biggest pet peeves. I have seen what happens to children that are not given limits and the types of adults they turn into. That will NOT be my son. I know he wont be perfect but being polite and well mannered is not a choice in my home. So when times like these come up and I have to put actions to my words it is hard.

I now realize why my mother used to say "This hurts me more than it does you" she wasn't talking about the physical pain but the emotional toll it takes on a parent to want your child to behave and when they don't ,how emotionally it is painful to have to correct them. I "want" to just give in and just let him get what he wants and be happy in that moment, but at what cost to his future. I try to keep that in mind. God has given me and Josh the responsibility of raising not the child James but the man of God Christ wants him to be. And I try to take that seriously.

So even though therapy was pretty much a complete bust, they gave us this cane to practice with this afternoon. I plan on do that after James' nap. Then it will be EARLY bedtime for grouchy pants!!