Christmas Program 2010

Our Newest

These are the photos from the website that we all fell in love with. His name is Rowdy, he was born 10/2/10 and he is a ball of energy and personality. After a 5 hour drive through the freezing cold and blowing snow he was now one of us.

I had one job in this life and I failed

Tired

Today is one of those days that the world is piling up on me and I am just tired, tired of it all.
I'm tired of fighting for my son, trying to get one doctor to REALLY listen to us and see how all his medical problems just might somehow be related.
Tired of trying to figure out where to take him next and what to do with the other 2 kids, the house and animals while I am gone.
Sick and tired of the genetics department. I finally had to go and pick up an info pack in person because 2 got lost in the mail. Then it took them over 2 weeks to receive the completed info. So instead of us having an appointment say this week we don't have one till the 8Th of next month.
I'm tired of fighting for his education. Even though 99% of his teachers are great it only takes one to drag you down and make you want to crawl back under the covers.
So tired of watching my beloved baby boy in pain day after day and being totally helpless as a parent.
Tired of watching him drag himself to school even though he is sick and in pain. He doesn't feel like going but what choice does he have when the school top administration does not have a heart and only cares about what looks good on paper.
Tired of the way I feel when I know his friends are off to play another basketball game without him. Even though I am happy that they are healthy I can't help but feel that sick twinge of I don't know exactly what it is in the pit of my stomach.
So scared that when I try to research hospitals that are known for treating Ehlers-Danlos (most doctors agree it is a great possibility) I read about child after child that have suddenly died from aneurysms because they were undiagnosed. The last one I read about last night was a 12 year old boy........

EDS

We took Marcus to Duke University Hospital last week in hopes that they might be able to offer some other treatment for his ever mounting medical issues. All they could do was say they agreed with the diagnosis of fibro and hypermobility syndrome. The recommendation was to find someone who does cognitive therapy and bio feedback in hopes he can literally retrain the way his brain processes pain along with techniques to better cope. Not that I don't agree with any of that it is just hard to explain that to a 12 year old. He only hears that he needs therapy aka 'shrink'.
Just a few weeks ago he started doing something new. His joints will pop loudly and feel as though something has popped out of place. While in North Carolina him and I were laying in the hotel bed, he was asleep and I was watching TV. I heard a loud pop, he woke up and yelled out in pain saying his shoulder had popped. The other times he had done this I thought maybe he had done something to cause it but this time I KNOW he didn't cause I was right there. The other day his elbow popped out. This has been the worst so far. He can't straighten it out without severe pain and has been in a sling trying to cope.
Over the weekend I stumbled upon a sight about "Invisible Diseases". I was looking for any new info about fibro when I seen a link for Ehlers-Danlos Syndrome. I clicked on it just because I had never heard of it before. It didn't take long to see that this described Marcus in so many ways.
EDS affects the ability for the body to produce and use collagen, literally the glue that holds the body together. There are a few different types, the EDS type 3 or hypermobility type has many of his symptoms.
For 2 days I read everything I could find on this including personal blogs written by mothers who children have this. I found myself thinking "oh my goodness" too many times to count cause I felt like I could have written much of it myself about Marcus.
Today we took him to see his Orthopedic in Cape. I wanted to take him for 2 different reasons...first to make sure that his elbow wasn't dislocated and second to run my idea or discovery by a doctor.

Good news his elbow isn't really popped out, it just feels like it. The ortho had never heard of EDS so he left the exam room to discuss this with a colleague. They had to look it up themselves cause it is so rare they had never heard of it before. When he returned he didn't dismiss the idea and said it was possible and we needed to see a doctor who's specialty is in genetics. Once back home I called Cardinal Glennon to get the ball rolling on that.

So what are all does Marcus have that makes me think I might be onto something, the list is long...

joint pain-knees, hips, elbows, back and shoulder pain diagnosed as fibromyalgia

shooting, burning pain up his neck into his head

headaches and migraines

constipation (has had his whole life, can be very severe) along with bleeding

joints popping which causes pain

problems with urination

teeth problems despite constant dental visits and now has 2 teeth that are crumbling

past eye pain and blurry vision

mouth sores

past chest pains

severe stomach aches and found to have acid reflex (upper GI scope)

week immune system

had ITP when he was 3 which means his platelets were low and his blood could not clot, it was very bad with him and I both covered in blood

What classic symptoms he does NOT have though are the skin issues. Thin, stretchy skin that bruises easily and does not heal. But not everyone has the skin concerns even though that is the main symptom you will see over and over when reading on the Internet.

Their is no cure for EDS only preventive care and to manage the symptoms. The hypermobility type is not life threatening but those with the vascular type usually don't live into their 50's because such issues as brain aneurysm or aortic dissection.

Tests for the hypermobility type are iffy. They can do a skin biopsy and genetic test on Marcus and us. It should show if he has the vascular type but usually type 3 is diagnosed from just a clinical standpoint.

I don't think he has the vascular type (if he has any of this at all) but we need to know. My only worry about that is he has facial features of it. I have looked at 2 different blogs of children with the vascular type and there are many similarities. Their mothers described them as beautiful children with chubby cheeks, big round eyes, button noses, and 'different' ears. All of you know what he looks like and what he looked like as a baby so you know that describes him. Every specialist we have ever seen comments on his ears. The one at Duke rubbed his dimpled ear and said...I quote "it's only one ear". I didn't have any idea that could mean anything.

Pretty much sums up all that is going on right now.

The Big K

It seems somehow I woke up today and to my shock Bre had grown into a little girl. Oh yes she is a big Kindergartner now!

She was sooooooooo excited to finally be going to the 'big school'. There were no tears shed, not even mine. How could I have any when she was so happy to be there? This girl was meant to socialize!

Happy 7th grader?

Marcus started Jr. High today....sigh...I know he has to grow up but there is just something about him that makes me not want to let go. I'm sure it has to do with him being sick most of his life. He is simply my baby boy whether he wants to be or not.

He definitely was not too thrilled with the idea of heading back to the regular grind. But whether either one of us was ready or not he begins a new chapter in his life.

Dream Vacation

To say our household had been hectic lately would have been putting it mild.
I am not going to go into the gritty details here, you will just have to take my word on it. Then Joey's family suffered a great loss. A young man lost his life and left behind 4 children, a wife and many others who loved him dearly.
Life is crazy, chaotic but also precious and can easily be taken away. So we threw all reasoning out the window and bought 5 planes tickets to depart ASAP...destination, St. Thomas in the Virgin Islands.
I had always wanted to visit the Virgin Islands so this was a dream come true for me but I never expected to fall in love with it the way I did. The moment I stepped off the plane the island breeze hit my face and I stared at the colorful houses built into the hillsides, tears actually swelled up in my eyes from the extreme peace I felt. That sense of peace stayed with me the entire trip. The place will always seem sort of magical to me because of that.