Just plain Mad

That's how I am feeling today, I am fed up with all these Doctor appointments. Today I walked into the Neurologist's office (an hour after our scheduled appt time) with hope, even excitement that I was going to get some answers, but it didn't go that way.

I am tired of dragging Cameron to the hospital going from one Dr to the next for hours on end, forcing him to stay in a 4 x 4 room, telling him "be quiet", "sit still", "don't open the doors", "stay here".

It's exhausting beyond belief, and Dad was even with us today to try and keep Cameron entertained while we waited and waited... and waited. We give Cameron all the sweets in the world so that we can try to talk to a Dr. Today I brought a new "trick" to keep him occupied, a rubber stamp and ink pad. It worked for a good 20 minutes, and then he started stamping his legs. Which I'll be honest we just let him do.

You have no choice but to try anything to keep him happy.

I spent all this time in the past weeks talking to our therapists about questions for the nuerologist (not to be confused with the NUEROSURGEON we see April 7th).

We came into today's appointment thinking we are going to find out all sorts of info about some of Cameron's speech patterns, behavior patterns and so on, but we areleft with NO ANSWERS, much less insight.

This two hour appointment (that made us late for our Orthopaedic appointment) was for all intents and purposes in my book, a waste of time. I had the pleasure of going through Cameron's whole medical history with him from day one, that's always a fun game. Let's refresh, shall we...
Hydrocpehalus
ETV surgery at 3 weeks
Shunt surgery at 3 months
Tethered cord surgery June 2007
Missing right kidney
Diaphragm defect
Heart Defect
Dandy Walker Variant

I am not sure why we had to go through all of this history, since it's all in the computer and in his record, although the Dr. did point out the ETV brain surgery he had while in the NICU was not noted and he even said "Hmmm, that's kind of important" yeah, you would think. God, I hate this place sometimes!!!!

In recent weeks I have had no less than 5 people (ranging from our therapists to our doctors) say to me "he is a child with a lot going on, there are many anomalies" And with that they should add - "So, no I don't have any answers for you"

After an hour of the history he finally took a look at Cameron, I was told he was going to do a "Denver" developmental screen - this did not happen - what he did do was check out his muscles and we saw the Clonus in his feet in full effect. It basically looks like Cameron has two jackhammers for feet. You try walking with jackhammers for feet.

What I have learned from today's neurologist appointment is that in all future appointments I am going to ask that the Dr do their physical assessment of Cameron first, and then we talk. Because waiting for Cameron to get bored in the room and then trying to manhandle him is not going to work. We also learned that there is no significant change in the Brain from the MRI earlier this month, very good and also expected.

What I did not learn today is why Cameron perseverates on doors, why he looks up and to the right/left when playing with his toys instead of looking at them, why his speech patterns are as they are, why he seldom makes eye contact when speaking with him. I realize "answers" was lofty, but some insight would have been really nice.

As for the Spine MRI, it's unlcear from our discussion the results, and no word on the CMG. These are the two most important pieces of the puzzle right now. I didn't plan on learning anything on that front today, so I am not even upset about that, it would have been a bonus.

Now the Dandy Walker bit, about a year or so ago I pretty much stopped talking about this because the Dr's seemed to just "shush" me anytime I mentioned it. Basically saying "don't worry about it". So I didn't. Until there was a small suggestion that the Clonus and his walking patterns were indicative of movement disorder, possibly caused by the dandy walker cyst in his brain. I asked the neurologist about this, we looked at the MRI and he showed me the cyst, and all that, but really had nothing to add other than it's indicative of DW Variant. Grrr... I guess I should just forget about it again. In all seriousness I will bring it up with Neurosurgery once we have the complete picture on the 7th.

We then moved on to Orthopaedics, which we were way late for. We saw a new Dr today, because our previous one moved us to his partner (without even telling us) but given my inside connections I found out this is fine, and even a good thing. We did like her and she wants to see us back in 3 months. We asked if Cameron would always need to wear his leg braces, and the answer seems to be yes. We also need to get them on again during night while he sleeps, we will try. If they don't see some improvement in his left leg there was talk of other options, I asked what those are. I don't like the answers (Serial Casting and/or surgery) so we'll be working on the night wearing. He will also likely always have an abnormal gait.

I don't think we were ever naive enough to think that he would walk like everyone else, and I am sure many of you are saying you can't even tell he walks differently. My response to that is Yes you can and if you so much as brush up against Cameron he will fall like a house of cards. Imagine him in a classroom full of kids, or on the playground, I can't just leave him to his own devices or he will tumble to the ground or burst into tears when startled. Yes, yes I know I should be happy he can walk, and I am. But I am also realizing that things are tough for Cameron and always will be, and that makes me pretty darn sad for my little guy. As he gets older will he be made fun of for his gait pattern? most likely. And well that sucks, because I can only protect him for so long and I can only be by his side for so long.


We then had the muscle test, I had to beg them after waiting 30 more minutes to just get it done. At this point Cameron was walking around the clinic in his tshirt and diaper, I know they were annoyed with us on some level for letting him do this but I didn't care. He can't sit in a tiny room anymore, he's been here since 9:30am and it's now 12:30!

Muscle test complete, a few "weak" notes on the report and we were on our way, thank god!!

April 7th is our next appointment. I hope I find the strength to make it through this last round, after all it holds all the answers, or at least that's my hope, I still have hope.
... and that we find some new "tricks" to entertain Cameron.