We've been going through a lot of changes over the past few months and Cameron has been up and down like a roller coaster.
Sad to say that Cameron's regressions are getting longer and more frequent. I don't know if we will be coming out of this one at all. I hate to sound negative, but its a fine line trying to stay positive and realistic simultaneously. It just seems as if we have started the decline.
This the third month of our current regression and every few weeks we drop another skill. He is having week long periods where he is refusing any food at all and only having formula. Thankfully, he has still been drinking regularly bc if he begins to dehydrate the doctors push for hospitalization. He fluctuates with his sleeping and eating issues and when he is in a rough patch he gets weak all around.
On a happy note we should be receiving Cameron's wheelchair any day now. We are so excited! Please keep us in your prayers that insurance will pick up and cover the claim because as you could imagine it is extremely expensive.
Also, the first ever Mitochondrial walk in central Texas is coming up! Mark your calendars for September 15th and join Cameron's team! Please help us get the word out about the walk.
Here is the link: http://www.energyforlifewalk.org/faf/home/default.asp?ievent=1026448
Despite his challenges Cameron remains his handsome happy self. He is a joy to be around and keeps us smiling every day.
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.
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.
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.
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."
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.
