Tuesday, November 22, 2011

Busy boy!

Well Cameron has a full schedule these days. He has multiple therapy appointments every day and then of course doctors visits on top of that. He is really enjoying speech and has made progress. He can now sound buh, bah, fuh, and sometimes puh. He is also still saying hi to anyone he sees and blowing kisses like crazy. He has never met a stranger.

We have been having some difficulty with his feeding. The week before last he started coughing anytime he drank or ate. Then it got to the point where e would refuse any fluids at all and that lasted a full week and eventually he stopped wanting food as well. After a week of this he was obviously beginning to get dehydrated and he started sleeping ALL the time. Just yesterday the doctors were telling us to admit him for an NG tube and to evaluate putting him on a feeding tube. Cody and I were pretty worried but instead of going straight to the hospital we took him home and by the grace of God he started drinking! He drank three bottles and ate a jar of applesauce. Thankfully we avoided the hospital. We are hopeful that he will keep up with it. We go back to the pediatrician this afternoon to re-evaluate.

We also spoke with his doctor in temple about his sleep study. We don't have the EEG results just yet. They said that he does indeed have sleep apnea like we suspected. He ha more than two apneas per hour with both central and obstructive apneas. We will go back soon to try a oxygen mask to see if that improves it or if we need to go another route.

We are excited to be taking the boys to the ranch for thanksgiving. As long as Cameron continues to eat and drink well then we will be heading that way tomorrow evening.

Please keep Cameron in your thoughts and prayers. We are hoping to avoid a feeding tube as long as possible.

Thursday, November 3, 2011

Trick or Treat



It seems like Cameron has come through to the other side of this regression-THANK GOD! He is still a bit clumsy (and because of this he sprained his thumb at the beginning of the week) but he is talking/babbling up a storm. I absolutely adore his baby talk. We have waited so long to hear it and I can't get enough.

We had a great Halloween. Caden was Lightening McQueen's driver and drove his car down the street trick or treating and Cameron was the cutest cookie monster you have ever seen.

Still no date for our muscle biopsy but we are scheduled for a sleep study soon to check for sleep apnea among other things and they will also be doing an EEG simultaneously.


Tuesday, October 18, 2011

Regression

We are into week four of this regression period. It is very discouraging. Normally after two weeks Cameron gets better and comes back around. I can't help but think things like "Is this the beginning of the permanent decline?" or "is he going to get better this time at all?" He is still happy but tired and not able to do things that were easy for him before. He is much more sensitive to noise. He is getting overstimulated much easier and stiffening up frequently. Thankfully he is still seizure free.

We still have no diagnoses. All tests came back negative. They will be scheduling a muscle biopsy soon.

I've reached a weird place. I'm not sure I even want to know what he has anymore. I'm afraid if they tell me that he for sure has mitochondrial disease that I will break. I don't know that I can handle it. It breaks my heart to read blogs and see videos of all the children with this awful disease.

My heart breaks even more to think my angel could have this ugly chronic disease.

Please continue to pray for peace and strength for our family but most importantly for Cameron's health.

Revelation 21:4
He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.

Wednesday, October 5, 2011

Praying for Peace.

I had some awful dreams last night. About things I don't even want to speak aloud. Suffice to say they were about my worst fears for Cameron and our family.

It's been a while since I let myself get to that raw place and this morning I'm climbing out of it again. 

Cameron has had a rough few days and has been in another phase of regression. I suppose that is what has brought these feelings back around, but its OK because he WILL come through the other side and regain what he seems to have lost. 

When I really think about it I feel selfish and silly for letting these setbacks get me so upset. Cameron is a beautiful and fairly healthy boy and a tremendous blessing. There are other families out there that I know or just follow online and their everyday life has so much more pain. I think that knowing what they go through helps me to appreciate what we have but at the same time it scares me for what they say will come.

I just thought I would share a few songs and scriptures that help me in times like these in hopes that they may touch someone else as well.





Mk 16:17...........these signs will follow those who believe: In My name they will cast out demons; they will speak with new tongues; ...they will lay hands on the sick, and they will recover.



He gives power to the faint and weary, and to him who has no might He increases strength . Isaiah 40: 29




Psalm 30:5
Weeping may endure for a night, but joy comes in the morning.



Psalm 34:4: "I prayed to the LORD, and he answered me, freeing me from all my fears." 

Sunday, October 2, 2011

Just a few of the reasons why...

this boy is one of my most treasured blessings.

His smile will melt your heart.

He is completely pure.

His laugh is contagious every time.

He will crawl across or through any barrier just to kiss you or gently lay his head on your knee to give you love.

Even on the worst of days his sometimes too slobbery kisses will completely turn your frown upside down.

Every time he hears music he claps excitedly.

No matter how upset he gets at being poked and prodded for tests or blood work-mommy singing will bring a smile of relief and he just snuggles his head onto my shoulder.

The look of pure joy on his face he gets when his big brother looks his way.

The second daddy comes home from work he begins squawking as loud as he can until Cody picks him up and then grins so big!

The delight in his eyes every time someone speaks to him.

The warmth he radiates when we snuggle every day at nap time.

Even though I spend most of my time taking him to therapy and trying to teach him-we have learned far more from him already.

No matter what we may face in the future with Cameron's disease it will all be worth it just to spend my days with him.

Tuesday, September 20, 2011

Still no diagnoses.

We met with Cameron's neurologist yesterday and his staff. We were there over 5 hours. Mostly waiting which is sooo much fun with two active toddlers-NOT. It wasn't too bad though.

We talked with Dr. Foster quite a bit and answered all the usual questions about his behavior and any new developments. Unfortunately it seems as though we are just as far away from a diagnoses as we were a year and a half ago. Cameron's case is just so unlike most brain diseases.

They did a whole other batch of genetic tests this morning at Memorial Hermann. They feel strongly that it is a genetic disease but didn't mention much about mitochondrial disease this time and in the past that has always been the front runner. They even mentioned Retr syndrome (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/) which in the beginning thought to only occur in girls but apparently it can be present in males as well.

We did read the reports from his last MRI and the only new information we saw was that he now also has diminished gray matter in the hippocampus region. This is what causes long term memory problems. That makes so much sense to me because it usually takes Cameron a very long time to learn new things but if you don't use that new skill for a week or two it is GONE and you have to start over.

We are relieved that Cameron has been mostly seizure free since his first episode.

Also, Cameron has started babbling. He will say hi over and over in his sweet little voice and now he is babbling 'buh buh buh.' We all love to see his big smiles as he entertains us with his sounds. He has been quiet so long so we love love love it!

We are driving home from our doctors visit in Houston right now. After two nights away from home we are ready to get there!

Thank you for all of your thoughts and prayers!

Lots of news.

Last week we learned that our insurance had changed and that Cameron is only allowed 20 therapy visits per year. Cameron meets that in a single month so obviously we have had to cancel all therapy until we find a solution. We have always been turned down by government programs in the past but I am reapplying. It's all we know to do. We cannot afford to pay out of pocket for therapy so we are hoping to find help. Cameron will require therapy throughout all of his life and it is so important for him.

Also, last week we met with Brian from Care Source (awesome service!) and were talking about getting Cameron a bathing system for the tub. He has outgrown his baby seat now that he is a whopping 32lbs and he still requires support in the bath. We picked out the best one suited for Cameron's needs and then found out a few days later that the bath chair is not covered by our benefits either even if he needs it for medical reasons. Cameron also needs new leg braces because he has outgrown his first pair. Both of these things are very expensive as I'm sure you know. Everything for special needs children is.

We are wanting to do some fundraisers to raise money for these items and for Cameron's care as well as overnight trips to Houston for his doctor visits. His latest blood work is costing us over $3000 that we are on a payment plan for.

I don't mean for this to be all about money, but unfortunately that is our main problem lately. If you have any ideas for fundraisers or would like to help us get something started please comment below or contact me by email or Facebook. All help is greatly appreciated!

*right now we are having an Avon fundraiser!

Check it out here: http://shop.avon.com/shop/default.aspx?newdept=&s=Fund&c=repPWP&otc=201120&bnd=&setlang=1&ym_mid=&ym_rid=

Just be sure you have Cameron's event selected!

Thursday, August 11, 2011

I Am Going On A Journey

I Am Going On A Journey

I am going on a journey,
Won't you come along?
I need someone to help me.
A person big and strong.


I'm walking on my journey
But my feet are very small.
Can you stand beside me,
And catch me if I fall?


At times when I can't keep up
With life and all its fears,
Can you put me on your shoulders
And wipe away the tears?


When the steps I take are not big enough
And it's hard for me to grow
I know I can depend on you
To let me take it slow.


I'm going on a journey,
Please, won't you walk with me?
I need someone who understands
The place where I should be.


I promise when the road is tough
And you want to turn back home.
I will hold your hand real tight,
So you won't feel so alone.


I'm going on a journey
I don't know where it ends,
But if we walk together,
We can always be best friends.


And when the journey's over
And we find where we should be.
I know that you will be so glad,
You took this path with me.


I'm going on a journey,
Please, won't you come along?
I need someone to guide me
A parent—big & strong.

Written by Sally Meyer

HEAVEN'S VERY SPECIAL CHILD by Edna Massimilla

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD.



I read these poems this morning and was really touched by the words and it brought me back to a poem I have carried in my Bible for as long as I can remember. My grandma gave it to me a very long time ago. It was read at my Father's funeral back in 1988. I used to cherish this poem so much because it helped me cope with my father's death, but now I have pulled the thinning paper out of my Bible and realized that it was meant for me and for this time in my life.
"I'll lend you for a while a child of mine," He said.

"For you to love the while he lives and mourn for when he's dead.

It may be six or seven years, or twenty-two or three,

But will you, till I call him back, take care of him for me?

He'll bring his charms to gladden you, and should his stay be brief,

You'll have his lovely memories as solace for your grief."

"I cannot promise he will stay; since all from earth return,

But there are lessons taught down there I want this child to learn.

I've looked the wide world over in My search for teachers true

And from the throngs that crowd life's lanes I have chosen you.

Now will you give him all your love, not think the labor vain,

Nor hate Me when I come to call to take him back again?"

"I fancied that I heard them say, "Dear Lord, Thy will be done!

For all the joy Thy child shall bring, the risk of grief we run.

We'll shelter him with tenderness, we'll love him while we may,

And for the happiness we've known, forever grateful stay;

But should the angels call for him much sooner than we've planned,

We'll brave the bitter grief that comes and try to understand!"

Saturday, July 23, 2011

Blessings.

Isaiah 40:18-31
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

*click the highlighted words for more information*

Today I am feeling overwhelmingly blessed. I am thankful for cartoons playing a bit too loud, snacks spilled onto the floor, and suspicious giggles coming from the other room.

With the chaos of having two children and one with special needs sometimes the beauty of every day can escape me, but after this last week I am very aware of how blessed we are to have each and every moment.

We have been traveling down a winding road for the past two years trying to reach a diagnoses for Cameron, but we have been so fortunate to never have to encounter some terrible things that some have to face nearly every day.

This past Tuesday around 11:30AM Cameron had his first seizure ever. Words can not describe how terrified I was. Thank GOD Cody had come home for lunch which is a rarity. We rushed Cameron to the doctor where he continued having seizures and vomiting. He was struggling for breath and never regained full consciousness. An ambulance came and took us to the ER and Cameron's seizures got worse and more strong as time went on. They tried multiple medicines and nothing worked. His breathing was becoming more labored and his oxygen levels continued to drop. Finally, around 5:00pm or so they had to sedate and intubate him. We were absolutely horrified as we watched him lay lifeless on the table with the slew of doctors and nurses running through the room. Cameron had seizures from 11:30AM to 5:30PM without ever regaining consciousness. He was not asleep, just not there. His eyes were rolled back and he was unable to move at all except for the involuntary motions of the seizures when they would flare up.

Around 6:00PM they life flighted him to Scott and White Temple in a helicopter. They removed his breathing tube and after a while PRAISE GOD Cameron was breathing on his own and was looking around. He was very out of it after being on so many meds but I can't tell you the relief of seeing him look AT ME and not through me. We spent the rest of that day and the next in the Pediatric ICU and then our last night we were moved to a regular room. Cameron did have a lot of breathing difficulties the first night and remained on oxygen but the doctors believed it was due to all of the heavy medications that he was given earlier that day. It seems like we were in the hospital two weeks. I cant believe that this ordeal was only 3 days-it seemed like so much more.

So, now on top of his un-diagnosed white matter brain disease Cameron was diagnosed with Epilepsy and Status Epilepticus. Status Epilepticus is a very serious condition and extremely life threatening if not treated aggressively.

With prolonged seizures like Cameron endured there is a risk of brain damage and also death. Cameron had an MRI and also a 24 hour long EEG. The EEG showed a slowing of the brain which is most likely the brain damage from his seizures, but we are incredibly greatfull because Cameron is once again defeating all odds.

Cameron has regressed in several ways, but we and his therapists believe that with time and work we will get him back on track. Cameron could have lost all of the past years work, but he hasn't! He is doing exceptionally well with his sign language and he is still able to pull up and many other things. He was even trying to mimic us doing the sign for 'I love you' yesterday and that is a really tough one for Cameron because he has a lot of difficulty isolating his fingers-especially after his seizures. He isn't doing well when we try to get him to step with us. It seems like he has quite a bit of work to do in that area, but still we are so thankful! Cameron was so tough throughout all of this and remains quite the trooper!

Cameron is now on a seizure medicine called Keppra that he takes orally every morning and evening. We also have to carry around emergency medicine for him called Diastat in case he has a seizure that does not resolve on its on within 2 or 3 minutes. 

I want to send a HUGE hug and thank you to every single one of you that have went through this with us and sent your continued prayers. We felt the love even through the scariest moments and it was so special.

Therefore my heart is glad and my glory [my inner self] rejoices; my body too shall rest and confidently dwell in safety. Psalm 16: 9

Monday, June 20, 2011

HERE IS THE FLYER TO PRINT AND TAKE TO ROSAS TONIGHT!

COME SEE US AND HELP RAISE MONEY FOR CAMERON! :)



The words of a mother...

"Remember that he is, first of all, my child. Let me see him smiling in his sleep and let me think about how handsome he is... and not about how delayed that smile was in coming. Help me not lose sight of my son in the shadow of his limitations... I know that you care for my child and that you work hard with him. I need your expertise to help him become all that he is capable of being. You need my help in understanding who he really is and in following through at home with things that are important. Remember, though, that you send him home at night and have weekends off and paid vacations. Let me have the luxury of having a vacation, sometimes physically, sometimes just emotionally, for a day, a week, a month, without your judging me. I will be there for him when you are long gone. I love my child with an intensity that you can only imagine. If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me. Celebrate with me, rejoice in who he is and who he will become... but forgive me if from time to time I shed a tear for who he might have been."
 Author Unkown


I saw this online and it really touched me because I know exactly how true these words are and I wanted to share.

Thursday, June 9, 2011

Rosa's Cafe Fundraiser!

Come to Rosa's on Monday, June 20, 2011
                              5:00 PM to 10:00 PM

Print the attached flyer and bring it with you to Rosa's and present when you order. Feel free to share this flyer with all of your family and friends! Rosa's Cafe is donating 15% of the total net sales to Cameron!


Scan 0001


Wednesday, April 27, 2011

Fundraiser

Tuesday, April 26, 2011

Collin Raye - She's With Me

Beautiful Music

I came across this video this morning while sitting with the boys. It made me cry because it was so touching. I wanted to share it with all of you.

Our little fighter


Right after his EEG a couple of weeks ago. That was a very hard day. EEG's are never fun.




Cameron was diagnosed with Accommodative Esotropia. He will be getting bifocals soon. Doesn't he look adorable?

Cameron got measured for his leg braces. He was such a big boy. Not one tear. He just sat and \observed.

He was very interested in the cast they made ;)

Cameron in his new walker! He does amazing in this. We are so thankful for everyone helping us with fund raising to pay for it and his braces. We are still trying to raise money to pay it off! :)


We had a great Easter with family as I hope all of you did as well. The boys each came home with a lot of eggs! Cameron's Gigi had the great idea to fill his eggs with his snacks like yogurt bites etc and he loved it! I will try to post pictures soon. The boys are both sick with the croup right now :( Hopefully they will be well soon.

Cameron is still thriving and enjoying every day. We are incredibly blessed to have our two boys. Caden is still loving to teach Cameron sign language. I cannot wait for the day that he will be able to communicate with us.

Cameron had his EEG and MRI and we got a pretty good report from them. The doctors haven't had time to go over his MRI in depth but it seems like it is good news for the most part. I will share more on that as I find out.

You can read more about Cameron's new diagnoses for his eyes here:
Esoptropia

Friday, April 8, 2011

Prayer Request

Please say a prayer for our family. We are attempting to get into a program called MDCP to help with Cameron's medical and they keep discouraging us and telling us basically that he doesn't have enough problems as if a progressive brain disease is a barrel of fun. If we could get into this program it would pay for almost ALL of his medical needs and much more.

We are about to go for a new round of tests in the next two weeks and he is also about to get measured for his leg braces. We are so excited for these things to happen, but it will cost about 3700.00 out of pocket for us and that is not counting our portion of Cameron's walker or his speech therapy that is $120 per week. Please pray that we have a financial breakthrough soon so that we can meet all of Cameron's needs. If you have any fundraiser ideas please leave a comment below or email me. I am going to try to make some more suckers soon so that we can sell some more. We had so many wonderful friends help us with that! Thank you to everyone who bought and sold! :)

Cameron is doing so well right now. He is finally getting over the croup from a week ago and becoming his happy self again. We got his new walker this week and it is so great! Cameron does wonderfully in it and seems to be really comfortable. It makes us so happy to see him get the things he needs to thrive. We have really enjoyed being outdoors the last few days. The boys love to jump on the trampoline and swing together in the backyard. Cameron just giggles at everything his big brother Caden does. They are best friends and I love it!

Cameron also started utilizing the sign for 'more'. He is using it all on his own now without being prompted to say it. It gives me a huge grin every time he does it! We are practicing new signs to try and teach him, but he has a hard time isolating fingers so I think it will take quite a bit of time. Caden is even learning some sign and I love to listen to him trying to teach Cameron.

Wednesday, March 30, 2011

Time is almost up!

This month we did a fundraiser with Scentsy thanks to a sweet, sweet lady! Thanks Kemberly Cooper!
The fundraiser is almost over-TODAY IS THE LAST DAY!

Please visit the link below to get some great products and help raise money to buy Cameron's medical equipment! :)

http://kcooper.scentsy.us

BUY SCENTSY!

Thursday, February 3, 2011

Thank you!

I wanted to do a post to say HELLO to anyone that may be visiting Cameron's blog for the first time.

One of our family members graciously offered to help us with a fundraiser of selling suckers and we have been so excited to get started with it. I am trying to put small labels on each sucker that she makes so that anyone that gives can read more about Cameron and our family if they wish to do so. Thank you Donna for everything you are doing to make this fundraiser happen!

We are going to do our best to make the money stretch! All the money that we raise with this fundraiser combined with what others have already given is going to go towards very important things! The two main things that we are excited about are Cameron's walker and his leg braces. These things are going to help Cameron grow and develop and learn to get around on his own. Hopefully the leg braces, or AFO's, will help to correct his feet turning and other issues like that.

Here is an example of the type of gait trainer/walker we are trying to get for Cameron:


And an example of AFO leg braces:


Also, any donations made go to helping us pay for Cameron's therapy. Currently, we go to Occupational Therapy three times per week as well as Physical Therapy three times per week. We are waiting to get insurance approval and then we will also be going for Speech Therapy. Cam and I are very busy! And last but not least, donations also go to helping us pay for Cameron's medical bills. He has had many tests done and we have many more to come.

So once again, thank you so much to anyone that has given to help Cameron. We are so grateful for every gift, whether it be financial or your thoughts and prayers. We can see those prayers working in Cameron every day!

The Jordan Family: Caden, Jessica, Cameron and Cody


Please feel free to look around on Cameron's Journey to read more on Cameron's condition. We still have no permanent diagnoses other than that he has a white matter disease and based on the rate of progression the doctors say it is fatal. Right now we are testing for Mitochondrial Diseases and you can read more on that in past posts. Please feel free to leave any questions or comments below. We would love to hear from you!

Thank You!

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.