Monday, January 31, 2011

Look out!

Cameron seems to be full of surprises for us every day. It feels like with every post I am telling you all of new things Cameron is doing and I LOVE THAT!

Cameron has finally, after 6+ months of therapy learned to release. His therapists have been trying to teach him to release by trying to encourage him to put things into containers. He has never wanted to let go of whatever he had in his hand, but now all of the sudden he gets it! It's like a game to him. We are so proud!

Also, today at PT Cameron learned to throw! I don't know if most mom's get as excited as I am right now that their child learned to throw things, but I am so elated! His therapist asked me if he could throw a ball and I told her that he never had. So within 2 minutes she had him doing it. I was amazed. Cameron has never learned anything without tons and tons of repetition, but he changed that this morning!

I can't wait to see what his next MRI shows. I think there is more going on his that little noggin than we know of!

Tuesday, January 25, 2011

My Baylor Bears

Having a snack this afternoon :)
We had a re-evaluation with one of the speech therapists at Hope Therapy today and I'm glad that they are going to start giving him speech therapy. The therapist said that she thought that Cameron would really benefit from it. We are anxious to help our little man communicate.

Cameron's Physical therapist, Haila, and his Occupational therapist, Ashely, are discussing leg braces. He has been having a bit of trouble with his right leg lately and now he seems to be dragging his feet a lot as well as turning them in.

He has been a happy boy lately. It seems like he is having more and more fun now that he is able to move around everywhere. He has always been such a sweet boy. He loves to snuggle his head into my neck for hugs. They are the best! 

I got a call from Memorial Hermann today (Cameron's hospital) about his impending tests. Before any test that uses sedation or anesthesiology they call and ask a million questions about his condition. Hopefully we will get a call from scheduling tomorrow. I hope it's not 4 months out like usual!

Caden's GiGi and Pop Pop got him a trampoline from one of our customers that didn't use it anymore and we surprised him with it today. He was so excited. It was priceless. I love seeing that grin! He jumped on it as long as we would let him. It's still so cold in the evenings! I am excited to get Cameron on it soon as well. They use the trampoline at physical therapy a lot to help Cameron become better aware of his balance and to teach him his protective responses.

We are going to start selling suckers soon as a fundraiser for Cameron's medical and his walker. If anyone would like to help sell them please email me. More details to come soon!

I had the awesome opportunity to see Kari Jobe at Antioch last Friday night. She is so INCREDIBLE! I got filled up and I know everyone in the room did as well. She has such a gift. She sings beautifully and also gave a great word!

The song that touched my heart the most was Healer. I have been playing and singing it with Cameron non-stop! :)


Hope you all enjoy it too!

Monday, January 24, 2011

Mito

I came across this in my search to learn more about Mitochondrial Disease. Very informative.


Thursday, January 20, 2011

Doctor News

I have been trying to reach Cameron's neurologist for weeks without luck. Yesterday I called to leave another voice mail and shockingly he answered the phone! That never happens! 

Cameron's latest blood work that we were having analyzed by geneticist came back negative for whatever metabolic disease Dr. Foster was testing for. AGAIN. It is a weird feeling. You are happy when test after test come back negative which means your child doesn't have THAT particular diesase, but then you are back at square one wondering when will we ever know? Dr. Foster is ordering several more tests. Another MRI, MRS, more bloodwork, a DTI, and a P1FlARE. The last two tests he said are brand new and might really help with Cameron's diagnoses. He also mentioned that we may need to do a muscle biopsy.

Since Cameron was born he has had a sort of pattern to his development and growth. He will plateau for several months and then have a short period of time where he learns new things and appears to be getting better and we seem to go back and forth with it. Dr. Foster said that this can be symptomatic of a Mitochondrial Disease

Cameron has been doing great, but we have also had some problems surface. For instance, in the last two months he has learned to get from laying to sitting, he began crawling and just last week he started pulling up on certain things. Those are HUGE milestones, but there have been other things starting that aren't good. Throughout the day Cameron's mouth droops down on the left side and his physical therapist and I have been noticing how much weaker his right leg is than his left. Dr. Foster said that when there is such substantial brain damage that the childs body and mind  become comprimised and I guess basically he can't control everything as he should and his body can become weak.

For the past few months it has been so easy to be positive and just pretend like this was in our past because Cameron is doing so great, but seeing these physical issues and talking to the doctor brings back the anxiety and fear.

Here is some information if you would like to learn more about the mitochondrial diseases:




We are so thankful that Cameron is thriving and that he is such a sweet, happy boy and we will continue to pray that things stay that way. Please continue to pray for Cameron and for his doctors.

Tuesday, January 18, 2011

You are peace when my fear is crippling.

In some of my darkest moments this is one of the songs that I could lose myself in and helped me to give it all to HIM.

Praying for you and your family M.

It's been a while

Wow. I feel like I have really neglected Cameron's blog!

Cameron is doing phenomenal. He is moving about everywhere and crawling so well! Cameron also began pulling up in his playpen last week which is obviously another HUGE step for my sweet boy. Sometimes I can hardly believe all that he is learning and doing. We were told he would never do any of this and yet I know that much more is to come.

Things happening in the Jordan household:


Cam is a little stingy with his kisses but that makes them even more special!

He is really enjoying feeding himself.


Cameron is pulling up! He gets onto his knees and then he pulls himself into standing!
Cameron is finally able to pester Caden as every little brother does and it is hilarious.

These goofy boys are having constant laughing fits while playing together every day and I absolutely love it!
video
Cameron is enjoying rolling the ball back and forth to big brother. He loves this game. These things may seem small to you, but they are huge for my little man's brain!

We are missing Cameron's Occupational Therapist, Lynea (she moved-good luck Lynea!)
As I was typing this email this is what Cameron was doing.
At least its only paper in there! He was very proud.