What lies ahead?

May 26, 2010
So this has been a big one coming - the post about Alexa. This is the problem I used to find with blogging - is that when something important came along that I wanted to write about, I built it up in my head so much that I just couldn't set the time aside to actually write it all down. But ultimately, I always feel better to just write about it - so here goes. Sorry for the writing on this post - I will probably be going back and forth and all over the place.

Most of our friends and family know about this now, so excuse the repetition. But since I am just getting the journal back up and going, I am going to put the details of it again here, so as to move forward down the road with this process. 

When little miss Alexa turned about 1 years old, I started noticing that one side of her chest was bulging out more than the other side. Nothing really big - I pointed it out to Dave one day and we just kept watching it. Soon her 18 month check up was coming up and I knew I should mention it to her pediatrician. Well, turned out - she noticed it before I even said anything. She told us to get x-rays done right away on her front and side - so we did.

This was at the end of April. Well, several days later she called to tell us that the x-rays showed that Alexa has at least 2 fused ribs together. In addition to that she has 4-5 vertebrae that did not form correctly when she was born - called butterfly vertebrae - that is causing early scoliosis.  Dave told me this news as I was driving my girls to Gymnastics and I was just heartbroken. I had to fight my tears as I thought of what it might mean for Alexa. I obviously figured something was going on with her ribs, but the last thing I expected was that something was wrong with her spine.

So next she has to get an MRI of her complete spine, and then we meet with an Orthopedic Surgeon. Or two. We were supposed to have the MRI on Monday (May 24), but Alexa had a runny nose, which is not good when you have to sedate them. So we wait again - and she is going back on June 7. We have 2 doctor's set up right now to see her - one here through Long Beach Memorial and one at CHOC in Orange County. We also need to go see a geneticist. See, since she was born, she has had a series of little abnormalities... She has a skin tag on the back of one of her ears, an extra bulb of skin on one of her hands when born, and the big one was being delayed in her eye development (focusing). So her ped says we should look into that too.

So what does it mean? Well, we don't really know yet - but I have been researching it all on the internet. I am not good at staying off the internet. I know it is not good - but I just have to look it up and find out as much as I can. It can be devastating, yes - and it is definitely not Dave's style of dealing with things - but I feel like the more I can go in with to the Doctor's, the more I can have a discussion about it. Most people know and understand scoliosis to some degree - in fact, I have it myself. Alexa has it 'side-to-side'. Congenital Scoliosis means it "occurs because of a developmental defect at birth". It means that unless it is continually checked on a treated throughout her life, it will continue to get more severe.

So far, I am mostly finding treatments that involve spinal fusion or growing spine treatment. It looks as tho there is a good chance that this may be in her future.

So what about her ribs? Well, it's interesting - if you google rib fusion, you pretty much can't find any results that aren't connected with congenital scoliosis.. To be completely honest, I am scared about what I am reading. I had a few pretty dark and sad days there after first hearing the news and seeing this stuff soon after. I am trying so hard to not jump to conclusions - but "fixing" fused ribs isn't exactly an easy process. 

For the most part it looks like something like this might be needed - a vertical expandable prosthetic titanium rod.

The ribs + the scoliosis can mean a multitude of things. It can mean something called TIS, which involves serious problems with their breathing because their chests are not big enough to allow their lungs to develop fully. This is the part I can't think about, cuz when I think about it - it hurts.

I realize this is all very medical-speak - but it just happens to be what is occupying my mind right now. So I am sharing, just to share - for my own sake, our family's sake, and for our lovely friends who have been concerned and praying for us. We love you.

In the mean time, I give her lots of kisses... I laugh at her extremely funny and always changing personality... and I let her fall asleep on my shoulder at night now - just to get my hugs and cuddles in.