Mito

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

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:

What is Mitochondrial Disease?

Types Of Mitochondrial Disease

About 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.

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!

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.

Big News!

We have known since the moment we met Cameron that he is an amazing little guy and he continues showing us that every day.

This past week we were very blessed to take a family trip to Disney World. We had an incredible time and will never forget it! 

Not only did we have bundles of fun seeing the sights, but Cameron had some surprises in store for us. If you keep up with us on Facebook than I'm sure this is old news to you. While we were there for our week long stay Cameron began crawling! That my friends is HUGE! He also will lean in and give us kisses. It is the sweetest thing. It's so wonderful to see his eyes light up with excitement over his accomplishments. 

Caden and I have always loved to do patty cake with Cameron and last week Cameron started doing it with us! He can even make a fist with his hands and attempts to 'roll 'em'.

Yesterday I took Cameron to see the family doc because little man wasn't feeling too good. I was so excited to go and brag on my guy. For such a grim outlook to have been painted for Cameron it is a great feeling to be able to tell his doctors that because of Jesus Cameron is defying all odds! We were told to expect him to begin declining rapidly and there was no hope, but we have been praying faithfully and I know that so many of you have been as well and I thank you for that! The doctors are literally speechless.Our neurologists is going to be doing some different testing based on Cameron's progress. He now thinks that Cameron may still have a white matter disease, or a leukodystrophy, but maybe it is a type that stops progressing at random and the brain learns to adapt around the damage.

Cameron still has a lot of learning to do, but he has come miles and miles! He is a happy healthy angel and we are so blessed to have him in our lives. 

I will be posting videos of Cameron crawling etc as well as Disney photos soon.

Thank you everyone for continuing to pray for Cameron and our family!

God of the impossible

 

I want to share some amazing new developments with you all. Cameron, according to doctors, should be regressing quickly and losing what function he has. But I don't think our doctors are aware of all of the prayers going up daily for my sweet, sweet boy.

Last week Cameron sat up on his own twice and has done it a few times since then as well! He even started trying to pull himself up while in his playpen. Those are HUGE steps forward for Cameron. He hasn't shown any interest or progression on these things in quite some time.

This morning we are getting the boys ready to go to Houston for yet another opinion on Cameron's condition. We are going to Texas Childrens for the first time. The boys and I sat down for breakfast and I was trying to feed Cameron tiny bites of a breakfast cereal bar before his jar food and he absolutely refused it. He started throwing his head from side to side as if telling me no. This is unusual for him. I sat and looked at him for a few minutes and then decided to let him try on his own. So, I broke it into itty bitty pieces and placed 2 on his tray and I barely had time to take my hand away because he grabbed them so fast and crammed them into his mouth! 

If you don't know much about Cameron's condition this may not seem like too great of news to you, but it is! Cameron is currently unable to do the 'pincher grasp' and hasn't been able to feed himself little snacks. He only eats pureed baby foods and drinks milk. He has been trying to learn here and there, but it's as if all of the sudden he has woke up and is capable of so many new things!

Prayer works! Please continue praying for Cameron and our family. God is moving. Cameron is learning against all odds!

1 Corinthians 2:5

...so that your faith might not rest on men's wisdom, but on God's power.

Making Sweet Memories

This morning as Caden was running around in his underwear singing along to Diego on the TV Cameron and I were enjoying some great worship music. My sweet boy was just smiling as he watched me sing along and then started clapping with the music. He really loved it. Maybe next time Caden will join us :)