Camp Day #3

James and I almost didn't make it to camp today. James decided to wake up at 3am this morning share a happy "Good Morning" with me. I hear his calling good morning and when open my eyes I see little fingers waving and me from behind the half wall that separates my bed and his crib. It was pretty cute but would have bee cuter had it actually been morning. After about an hour of James serenading me with his raspberries on his arm, he went back to sleep. Needless to say it made for a late start to the morning.

We did make it though and had a great camp. James did LOTS of sit to stand activities today. Normal he has a little table in front of him that he will put his hands down on to help him stand. NOT HERE! He has to put his hands in front of him ( in a prayer position) and stand using just his legs muscles. He did 20 reps of that!! His little legs were noodles after that. He did it though because the pay off was getting to roll cars down and slide and what 2 year old little boy does enjoy that.

After his 3 hours of PT he had 1 hour of OT today. She wanted to do some testing on James but after 3 hours of PT she did really get great cooperation. He just keep putting his head down and saying " I go night night" *Mommy's heart was breaking at this one* But the trooper that James is, he did the whole our and even had a little fun in the process playing with the kitchen toys. Although I was concerned that he kept telling the therapist that he burnt the toast! He must have gotten that from my mother :-) Sorry mom didn't mean to throw you under the bus here!! haha

After camp we got to go have lunch with one of James' facebook "fans" that was in town and had contacted me. I just LOVE meeting the people that have prayed for James for so long. It really is nice to put a face to the comments. James was tired but a flirt! He thought her 11 year old was really cool because she was playing her music for him. It was a nice break from the therapy life we are living right now. So thank you Leslie!

After James' nap this afternoon, I think we are going to take a field trip to Wal-Mart and get some things. James is having muscle soreness from all the extra work so the therapist suggested some warming massage cream. Not really exciting events after therapy but we are doing well . This weekend I hope to have LOTS of pictures ( if blogger will start letting me upload them) because if the weather cooperates I am going to take James to the zoo. YIPPIE!

Camp Day #2

Whew!! I think I could just post that one word and it would just about sum up what I think about this intense camp experience. I am learning so much and what James needs to be getting in physical therapy. I hope our home therapist are ready for me to come back because I am being armed with some good stuff ;-)

James' session starts out with warm compresses on his legs and back, then they do a 5 min massage to get his legs warmed up. After that they do a series of stretches but all desquised at games that James actually enjoys. Today we worked a LOT on his tall kneel. This is something that we have done at home but the level of reps and intensity James is being asked to do is unbelievable. I didnt realize that he could be pushed his far and DO IT!!

He had to knee walk in what is call tall kneel. This means that he is up on his knees only and cant sit back on his bottom. He had to do a puzzzle inthis position, but the catch was that each puzzle peice what at the other end of the table and it took him about 10 side steps on his knees to get there. THEN he had to bring the puzzle peice back ( 10 more side steps) and put the peice in its place. Might sound simple but this was hard work for James when he has never even been able to get into tall kneel before the surgery.

We did more big ball excersies as well. James got to take a break after a bout an hour and half. Even on his break he had to stand in the stander but he didnt mind because he got to play with playdoh with one of the UAB pt students. She was cute and James was a flirt!! hahaha At the end of the 3 hour James got to walk out using this quad canes. He did even better than yesterday. The put blues clues stickers on his shoes and the canes to teach him the process. I think my jaw stayed on the flo0r because I just never imagined him in canes just 8 weeks out from the SDR.

After therapy we got a special treat becuase Josh came down to see us. It was SO great to see my husbands sweet face. James was happy to see his Daddy too. We got to hangout and eat dinner together. Tomorrow we are adding a little more work ( I know crazy) for James. We will start his OT part of the camp as well. So that means that he will go 3 hours in PT and then have a lunch break and come back for an hour of OT. That is a reciepe for one tired baby!! I am glad that he went to be tonight at 8:30 without issue because he is going to need his rest!

Camp Day 1

James and are in Birmingham for an intensive therapy camp. Today was his first day in therapy. Our focus for these next two weeks will be walking and strengthening. We will also be working on getting James a little more independent in using his walker or canes!! I never really expected him to be using canes right now but as of today those expectations are on my high list!! I say that because today I watched James take his first steps using the quad canes.

Ok first let me back up. We left after I had a doctors appointment that I learned I have a hernia...great! not! I am sure it is from all the lifting and tugging I have to do everyday with James. And it really isn't going to change much until James can get a little more independent in his everyday tasks.. After the appt, we hit the road without a place to stay. The Ronald McDonald House doesn't take reservations and when we left they were full but I just put it to prayer that a room would open up, and about 20 mins before we got there I called and they had just gotten a room for us :-) We got here and I was impressed by house nice it is. So clean and everything is really new looking and perfect for kids. Our room is really clean and nice. They also provide dinner every evening which is a huge money savor. Now the downside for us is that Josh can't be here with us. We haven't been apart this long in over 6 years and it is a little scary to be doing all this without him but it really is an opportunity that we cant miss out on for James.

So back to today's therapy. The center here is much larger than our at home. It is obvious that they get grants through Children's. Our therapist is really nice and very focused which I like. She had a clear plan for not just today but also the 2 weeks we will be here. We started out talking about James pre-op and how the SDR has changed his body.

I sort of sat back and let her work with James. She did really great with him. She made everything into a game but still really challenged his body. I was surprised that she jumped into the hard stuff right of, but I guess that is why we are here! She did some of the stretching we have been working on at home doing and then she did some big ball games. I have pictures and videos but blogger isn't working with me right so you can see them on the facebook page as well.

After about an hour of strengthening activities the PT moved to standing and walking. He got to take a break by standing in a stander and eating a snack. There were a lot of other kids in the gym and several came up to play with James. It was cute. One little boy brought James a car but James really wanted his Blues Clues sticker that he had LOL! After his break the pt brought out the canes. They have bit of a different philosophy than our home therapist. Here they want to get them in canes as soon as possible because they feel walkers don't give the best postures. I can see the pros and cons of each side really.

James did amazing in the quad canes! The therapist even said she didn't expect him to be that stable. She told me that she felt we shouldn't put him back in his walker! SHOCKER! I guess we will see how at the end of these 2 weeks he is doing before we make a big choice like that. But it really makes me excited to think of James being able to walk using canes. That opens up his world so much more!

I guess to wrap everything up, it was a great first day. I didn't expect to have as much to say about it as I did but they hit the ground running and I LOVE IT! I am so excited to see what James is doing after this camp. Maybe we can go up to see Dr. Park using canes ...wishful thinking but it is my heart! James is wore out and currently taking a nap and Mommy's isn't too far behind him! See you tomorrow for Camp day 2

We ARE still here!!

What a busy summer this has been. Not only the surgery but my photography business has really kept me on my toes. I am not complaining because it has been needed income for our family with all the extra medical costs. Just wish I could get 5 more mins of sleep ;-)

I have been lacking on keeping up this blog and it isnt because I dont want to, more of just having a minute to sit down and type everything out. James has been growing stronger everyday. He is really wanting to walk everywhere he goes. I have been trying to really let him have that mobility but boy is it hard on my back. I have be advised by therapist not to bend over to help him walk so much but that is coming from a therapist mindset and not from someone that lives with a 2 year old that wants to be walking. I just can look at his face and tell him to crawl when he asks me "Mommy I walk now" So me and my chiropractor might get to be best friends but my son will get to walk!!

We will also be headed down to a special intensive physical therapy program in 2 weeks. I have worked it out to where James will be getting 3 hours of PT 4 days a week with therapist that are very used to kids post rhisotomy. I LOVE all of our home therapist and they are GREAT at what they do, but I dont feel we can get that intense strength building that St. Louis recommend due to such full schedules. All we can get right now is 1 hour sessions, and that is great for day to day but I feel that James need s little boost to get his strength back up.

I aslo really want to bend the ear of the therapist that have 75% of their work load rhisotomy kids. I dont know what is "typical" post op and our home therapist dont really know either since they have never worked with a child this young right after the SDR. So some of the habits or issues we are dealing with concern me and I an not getting very clear answers. I get a lot of things I am doing wrong sometimes but not much encouragement that we are doing things right. It can be frustrating to walk on eggs shells and know that your therapist talk about you when you are gone. But I have to throw MY ego out the window and realize that I am doing what is right for OUR family and lives and it is ok if some people dont like me. Ahhhhh to be a "typical" mom would be nice but that is not our life and that is ok :-)

We have some BIG things happening in our family life right now as well. I will talk more about that when plan are a little more firm ( and no I am not pregnant) We are making some really big grown up decisions about or lives and what we want for the future. We are seeking God's plan and we know that He will guide us in all we do. I am looking forward to seeing what God has in story for us.

So that is where we are today.

6 weeks Post SDR

Well here we are! 6 week Post SDR surgery, and I couldn't be happier. James is really progressing so well, and I am really excited to see what the next few weeks and months will hold for him.

James has worked so hard to build his strength back up. We have hit a few road-blocks with sickness and just plain ole stubborn-ness but overall we is has been a smooth road. I have tried to find some intensive camp-like therapy but there isnt anything even close to our area. The only option that we have is in Birmingham and you have to be 6 months post op to go. So we are still looking into that but for right now we are sticking with our course of therapy.

6 weeks post op James can now crawl for up to 15-20 feet on his hands and knees, He can sit criss-cross ( Taylor sit) and he can even get in to side sit all by himself. As you saw in the videos, he is taking steps under his own weight and they are actually getting him places. We are still working on moving those steps into his walker.

Other little things that we didnt really expect are exciting too. James is talking much clearer and in long sentences. I have been able to understand him but now others can too! His hand movement is much better too. He can grip things tighter and pick up smaller objects. Another cool thing is that he seems to be switching from left handed to right handed. Which we always thought it was right handed because he has always stabilized himself with his right. So I guess we will see which hand he uses as we go along. As long as he can use one with quality, I don't care which hand it is.

This 6 weeks has gone by so very fast, and I am sure there are so many little things I am forgetting but I spend my days with my chin on the floor that it is hard to stop and make myself remember each little detail. That is why I try to have my cell phone with me so that I can video all the little things. In a way I feel like I am reliving his first year because I am getting to see all those milestones that I "missed" out on. I use quotes because I dont think I really missed out on them but instead God has allowed me an even sweet prize. I get to be so head over heels in love with my son and have more life under our belt. That just makes seeing these milestones even more exciting. It is also great to see the joy on James' face and how proud he is of himself.

Speaking of that sweet face of James. I have some new pictures to share of James. One of my photographer friends took James pictures and I LOVE them!! Kelly Clark Baugher Photography ! She is so talented and did a great job at capturing my son's spirit. I am happy to call her not only a peer but a friend. Thank you Kelly!!

Days like Today make it worth it!!

Every once in awhile I will get asked if all the therapy and stress we go through is worth it, and why dont we just let James use a wheelchair and move on. Well all I have to say to those people, well meaning you might be.............Watch this and tell me that James will never walk!!!!!

Sometimes it just sneaks in

When your child is born you are full of hopes and dreams for that little 1 min old child. You make plans, and then some doctor takes all those dreams away. Or that is what is feels like anyway. I want to be that family that has is altogether and moves on with life. I try my best to be that. And 90% of the time I would say that I never even think about those two words that have changed my life forever. Most days we just live our lives.

Yes, some of our dreams for our children and our family have changed but 90% of the time we just live life and move on with our new dreams. The funny thing is, they aren't plan B dreams. They are just new dreams that I never knew, I always wanted. My life is happy, my child is happy... I am happy. But there is that 10% of the time, where those 2 words sneak in....Cerebral Palsy. In those short seconds of time, you are brought back to when the rug was pulled out from under your world. In those brief moments, you wonder " what would our life look like right now if..."

Well this weekend I had one of those 10% days. We had the BEST time at my parents campsite on the 4th of July. All of our family was there, the weather was perfect and it was so much fun. We grilled, swam and made s'mores. It was the perfect 4th of July festivities. Except for those 2 words that sometimes float over me and attack. I was having such a great time with my family, and those 2 ugly words came to my mind while I was watching my nephews fly down the hill on their razor scooters. They were laughing and having a great time and my mind jumped to the
"If James didn't have Cerebral Palsy he would be doing that right with them" It is just a moment, a blink, but in that blink my heart falls 10 stories to the pavement below. I find myself watching typically developing children and wondering what James would look like doing those activities. I see a glimpse of the "What if world" and I want to fall apart. That is not an option for me because it is only a blink. By the next breath I have to bring myself back and move on because James needs me. James needs me to dream BIG and be his advocate, and expect success from him.

Then I come back to the 90% of my life. And this Life is wonderful. I have a son that I love more that the air I breathe. He is so happy and fills my life with such joy. The dreams I have for him are SO BIG!! And I do expect GREAT things from this little guy. He has proven to many wrong over his little life, and even though I got his "evaluation" today that belongs in that 10% of my life. I am going to keep if right there and not let it creep into my 90%. I don't agree with many things on that form. I know my son will do great things in his life.

I am SO happy that God has allowed me the opportunity to raise James and be witness to miracles here on earth. So even though there is a 10% that sometimes follows me and tries to steal my joy........ I choose to live my life in the 90% today and be happy that I have a sweet beautiful son that is doing so well and is such a joy!