Monday, May 31, 2010
Let me be written in Blog history...a little dramatic don't you think?! But I want to have it down to keep myself accountable that next year I will be running myself in the 5k of this race. I was inspired by some of the other runners and I think I can do it. I figure that I ask so much of James it is time to start showing him that I really do think it is important for all of us. So next year I plan to be in the race with James as well. I sure hope that he can run/walk right beside me with his own little feet!!
Here is a little video I threw together of our morning!
Saturday, May 29, 2010
This time next week, we will leave this house and life will never be the same...............
This time next week, we will start a new adventure in life.............
This time next week, we leave for St. Louis!
But those are hard words to say for me. I have distracted myself pretty well over the past few weeks. Or at least I have been distracted by situations, but I can no longer distract myself. This is the last week in our house with James' leg the way they are now. Every time I think about it tears well up in my eyes. Are we making the right choice for him? Is this the right timing? so many questions run through my head. I know that this train is leaving the station this time next week but I just wish I knew where it will stop.
Most of you that know me or have read my blog long enough know that I am Mama-Bear. I love that sweet little 2 year old with a passion that I never knew lived inside of me. I know that all mothers love their children but I think God give us mothers that have lost a child an extra dose of Mama-Bear with the children we get to raise here on this side of heaven. Or at least that is what I tell myself to explain the fierceness that I protect my child with.
But this is something that I cant control or even predict the outcome. I have to totally give this one to God and the neurosurgeons that will be operating on James. I have sit back while they open up my son spine and just wait. How I will do that I have NO idea, but I know that I have to. All I can do until this time next week is pray and have all the fun I can squeeze into a week with James.
That is why on the way home from Emma's recital I stopped and got James an ice cream cone and let him eat it in the car!!
Friday, May 28, 2010
If you dont have plans on Memorial Day the Fun Run starts at 10am in downtown Huntsville. come down and cheer James and the other kids on, and enjoy the day with us. Wear your yellow shirt or your Jump in for James shirt if you can.
I hope everyone has a HAPPY and SAFE Memorial Day weekend. Say a special prayer for our brave men and women that are giving everything for us to have the freedoms that we do!!
Thursday, May 27, 2010
And today was the 1st day. We went swimming at the family pool with all his cousin and my friend's son Jacob. We had such a great time. James has been so used to the warm therapy pool that the cool outdoor pool was a shock. He didn't like it at first but boy once he got used to the water he was a little fish. He didn't really want me holding him much at all but since he cant swim yet he didn't have much choice ;-) His uncle Matthew enjoyed throwing him around and James had a blast with that!
Tonight James and Uncle Matthew will be doing a practice run for the Cotton Row Run on Monday. And YES we will be participating in the Fun Run of the Cotton Row Run this Monday!! We are super excited about it and think it will be lots of fun for everyone. All of Matthew's kids run every year in it and of course Matthew and Jenda run in it. Matthew will be pushing James his his wheelchair and my prayer is that next year or soon after James will be able to walk/run the course himself! I know the kids are happy that James will be participating with them. I cant wait to get LOTS of pictures of the race and see that sweet smiling face going down the course!!
The rest of the week I don't really have a game plan really. I just want to get packed up and be a Mom for a few days. I am trying to focus on enjoying this time we have before the surgery and not think about all the scary stuff. I have my moments but for the most part I have come to terms with what is about to happen. I think the length of the surgery will be the hardest part for me, but just as long as I see his face safe and breathing at the end of it I will be ok. But that is worry for another day.
Monday, May 24, 2010
When we first started that class James was still army crawling and was unable to crawl in his hands and knees at all. He wasn't able to hold on to the rings or the parallel bar much less hang from it. NOW at the end of this 12 weeks he is able to crawl on his hands and knees across the entire mat, he can climb up most of the steps, he is able to hold on to the rings AND the bars AND swing on them!!! Talk about progress!!!
I hadn't really even thought about how much progress he had made in that class until today when we were going through some of the activities. I was so proud of James. He is such a fighter and the most determined kid I have ever met. I pray that we keep that spirit alive in him for many years to come.
We are going to miss Ms. Ally but I think she will be his teacher for the summer semester. James will not be able to go to Little Gym until July since he needs that day for PT. Little Gym has been so supportive and willing to accommodate for James. I just cant say enough wonderful things about the company and especially the teachers. I feel it has been good for James and the other kids in the class to see that we might be different but really we are all the same. James likes to play and goes crazy over the bubbles just as much as the other kids in the class!
I was one proud Momma when they called his name to come get his medal and He climbed those steps like a champ. I hope that next Little Gym Graduation he will be able to climb them all my himself!
I HIGHLY recommend enrolling your kid in the Little Gym classes. Check them out http://www.thelittlegym.com
Sunday, May 23, 2010
This week James went over to his Aunt LaLa' house. My sister adores James and he does the same for her. He also love Laura's roomate Tammy. I think they enjoy spoiling him, and boy do they ever!!
So in 14 days I wonder what our lives will look like. My prayer is that this time next year we will be looking back at this surgery from a walking James. But only time will tell!!
James has been doing really well in his physical therapy classes. The past 6 months we have been going 4 days a week for PT and 1 day in the Little gym classes , so I feel that we have prepared James for the intense PT that will be required after the surgery. Next week we are going to just enjoy some time off. I am looking forward to playing and doing some fun things next week with James to hopfully get out minds off what is coming.
Friday, May 21, 2010
is a wheelchair. Strollers are optional for families. Convenient, YES, but optional. James can self propel himself in this wheelchair but when he wants to go a little faster he needs a little push. Trust me I want James to not need this new wheelchair more than anyone. But for this time in his life that is not our reality.
I hope you leave here today a little more educated about what a wheelchair is and is NOT!
Thursday, May 20, 2010
Ok, so then we get to physical therapy. James is not in the best of moods but he pushes through. his PT does the Electric stimulation but on a lower setting so James was able to be distracted. He did really good and worked hard. He is getting really good and standing and pulling up on his own! After Pt is feeding and speech therapy. I am excited to say that James has graduated from Feeding therapy as of today!!! Yippie! We have learned some great tools to keep his eating and weight were it needs to be. Speech went great as well and James is showing some GREAT growth in his speech. I LOVE our speech therapist we have now. She has been such a cheerleader and resource for me that I just cant thank her enough!
After therapy, James and I got to meet one of his face book fans Amanda! She is a fellow SDR mom, and has been just where I am a few years ago. She gave me some good advise and eased several of my fears about the surgery. Today started out rather poopy ( pardon the pun) but I am praising God because He put a mom in my path that made it better :-) Thank you Amanda!!
Monday, May 17, 2010
Last night I woke up at 3am and was gripped with utter fear. My mind was an enemy that I could not get away from. Every time I put James to bed I think to myself " Enjoy this moment because I might not get anymore" I look at his little smile during the day and think " How will I ever breath again if I cant see that fact anymore"
I know that God is in control but my fear of loosing the 1 child God has allowed me to raise here on this earth is controlling me right now. I don't really know how to escape from its grasp. I have even thought about cancelling the surgery. I of course didn't but because my head knows this is the best thing for James' future. I just cant seem to control this fear and pure terror of loosing James. Right now I am listening to him in his room name everything he can see just to try and keep himself awake during nap time, and the sound of his voice is literally what I dreamt about before he was born.
I am also so afraid of seeing him hooked up to machines and tubes coming out of him. When we brought him home from the NICU I had hoped that I would never have to seen tubes and vents and IVs ever again but here we are. My head knows that it isn't like the first time but my heart worries. I worry about the moment I turn him over to the nurses and to go into the OR. Will he cry, be scared? Will my get physically ill like I do when I think about that moment.
What about when he wakes up? Will I be able to comfort him if he is in pain. How bad will his pain be and will they be able to manage it quickly. Oh so many thoughts are happening to me just 21 days out.
Will you please pray for this Mommy's heart, and that I will be able to be strong for James. I want ease his fears but I cant control my own. Please pray that God will show me His peace. And MOST importantly, please pray for Dr. Park. Pray that he is well and that in these next 21 days he will healthy and that all the nurses that will touch my son will be rested and well.
Monday, May 3, 2010
What a day! Here are some of the pictures that were taken. I SO wish that we had taken more but it was a buys day. I am happy to say that we reached our goal for the Carnival Fundraising!! We raised enough for our travel expenses the hospital co=pay and 3 months ( out of 6mo) of PT co-pays that we will need for the intense therapy schedule!
Thank is just not a strong enough word but PLEASE know that we love each and every one of you that has allowed us to give this gift of mobility to our son James!