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Using the digital kit, "Running and Jumping" by Vinnie Pierce.

Tuesday, March 30, 2010

Some answers

Dear Marley,

This should be the last letter that deals with the past. Next time we will be caught up to all the cute and amazing things you are doing in the present. But for now I figured we should catch your readers up on all the things we've found out about your body ( I won't say about you because you are so much more than your physical body ) .

So after the weekend in Dallas we headed back down to Austin for a followup appointment with your Opthamologist ( Dr. SeeGood) . Once again we had to dilate your eyes and wait a long time except this time your daddy and your two sisters were with us. Your sisters do not love waiting in Dr's offices. They are awesome girls but boy can they be a pain in the butt when they are cooped up.

Anyway after Dr. SeeGood looked in your eyes again she decided that your cataracts had already gotten worse in just a week. At that point she said that we should schedule the surgery for the end of March. I was alot less upset this time and able to ask some informed questions that made me more comfortable with what was going to happen. She also told us that she doesn't implant permanent lenses in infants so we would be putting contacts in your eyes at least until you are 2. With as much as you love eye drops I can totally see how easy that's going to be. ***insert sarcastic eye roll here***

After your eye appointment your daddy had to leave for California again and we were all pretty sad to drop him off at the airport. We headed back to Fredericksburg after that hoping to get back into a normal rhythm.

Unfortunately normal doesn't really seem to happen for us lately. On Wed of that week I got a call from Dr. Smarty's office. They had received some results of blood work back and they needed to do some further testing on you. They wanted us to be in Austin that afternoon. We quickly dropped your sisters off with the Bushes and headed over.

When we got to the office they took us back to a room and handed me a folder of paperwork. While the assistant stepped out to check on something I opened up the folder . In the folder was an article that they had searched out and printed from Google. (If you're wondering how I know this you should just ask your Dad why he calls me Dr. Google).

At the top of the article were the words Rhizomelic Chondrodysplasia Punctata. I had bookmarked this article about 3 weeks before. I had probably read it 100 times already. Looking back I think I had read it so many times because I needed to convince myself that out of the few things your illness might be this was absolutely not one of them.

At this point was where the appointment all went south. I had been under the impression that they wanted to do further testing on you because they still had no idea what was wrong with you. Well as it turned out the lab work that they had received back actually told them what you had and they just wanted to do further testing to confirm it.

So in a not very gentle or kind way Dr. NotsoSmarty informed me that you did indeed have Rhizomelic Chondrodysplasia Punctata (RCDP) . Her idea of helpful information ( besides the packet from google) was to give me information on Opiates and Hospice. Not so helpful really. I don't know if I have ever been so angry as I was leaving her office that day. Who was she to be telling me that you need opiates or hospice. I knew she was absolutely without a doubt 1 billion percent wrong and I was going to prove it .

That night after we got home I got everyone to bed and starting using my google magic. It was at that point that I found . I had seen the site before but had never really looked at it in depth. As I was looking at the site again I happened to see something that said "buy tickets" I clicked on the link and was looking at a ticket for a benefit for RCDP kids that was happening in Strongsville, Ohio. The city that your dad is from! How crazy is that?!?! After I saw that I looked up the family that was organizing the benefit and wrote down their number. I figured who better to hear about this disorder from than someone who is living it.

The next day I called Mindy Cirner. Her two kids Jake and Jordyn both have RCDP. She was amazing to talk to. She gave me hope which was something I felt like Dr. NotsoSmarty had totally tried to take away. She also gave me what so far has been the most important weapon in our arsenal . The direct number to Dr. Nancy Braverman.

Dr. Braverman is an expert on RCDP and she was able to look at your lab work and tell me more or less what we can expect in terms of the severity of your RCDP. She spent a long time talking to me on the phone and also a long time talking to Dr. Awesome. She is an amazing woman and I am so grateful that she is on our team.

So that pretty much brings us up to now. Last week you had your first cataract surgery combined with an MRI. The cataract surgery went great. We pink puffy heart love Dr. SeeGood.

Unfortunately the MRI didn't bring such great news. You appear to have Cervical Stenosis which is a fancy way of saying that your spinal column is really narrow at your neck. There just isn't alot of room in the column for your spinal cord. So far fortunately it doesn't seem to be affecting you at all. You also have a spot in the parietal lobe of your brain where it looks as if you may have had a stroke at some point before you were born. With all of this information though comes a new favorite Dr. He is a neurosurgeon and he said that the physical findings on the MRI do not determine who you will be or how you might be affected. Which of course is something that we already know but it sure is good to hear a brain surgeon confirm it.

As for how you are today. You are quick to smile and blow raspberries for us and you are almost laughing! The pain in your arms and shoulders is so much better. You constantly have your hands in your mouth and have been almost able to pull your eye patch off. You already love your sisters and have such a sweet sweet personality. You love to cuddle and you sleep up to 8 hours at night in your own bed. Neither of your sisters did that this early by the way. In fact most mornings we still wake up to them having snuck into our bed in the middle of the night.

You put a smile on the face of everyone you meet and we are so excited to see what the future will hold for you. I would do anything in my power to take the pain of this illness away from you and I know we have a long road ahead of us but I am so grateful that you are in our lives and I look forward to how all of us are going to be changed for the better because of you.

Cataract surgery number 2 here we come on Thursday.


1 comment:

  1. Thank you so much for sharing this with us. These letters are going to mean so much to Marley and the rest of you family years from now. What a sweet way to remember the journey and appreciate how far you've come. Marley is a sweet spirit and a fighter and if anyone can prove those Drs. wrong, it is someone from your family. I've seen the determination and fire in both you and Jonathan... the apple does not fall far from the tree. Looking forward to sharing the blessings of Easter with your sweet family! We love you guys!