Neurology News

Today, Cara had an appointment with her neurologist. We made the appointment out of concern for her lack of speech, wanting to get another opinion to make sure we weren't missing something.

First off, I voiced my concerns about Cara's lack of progress in verbal communication and mentioned how she was capable of learning new signs.

Then, we talked about how she did verbally communicate (open vowel sounds) and what was being done in her therapy sessions. Her neurologist agreed that there didn't seem to be much progress in the 8 months that Cara has been receiving speech therapy.

Next, Cara was undressed as the neurologist looked over her body. I wasn't exactly sure what she was looking for beyond signs of hypotonia (which we know she has). Then, she pointed out some spots that Cara had on her skin.

Honestly, I never game them much attention, as I just thought that they were normal on bi-racial children. It turns out though, that they are called cafe-au-lait spots and can be an indicator of several things, one of which being neurofibromatosis, an incurable disease. Of course, it could be something else entirely, or it could be nothing but, Cara shows several signs of neurofibromatosis including developmental delays and pressure on nerves or other areas of organs (hydrocephalus).

Not wanting to be an alarmist, her neurologist has decided to take a two-fold approach to finding out what's going on--both with the spots and with Cara's delays.

1. We are to undergo genetic therapy at Children's Hospital to investigate the spots (there's a genetic malformation that is linked to neurofibromatosis) and possible causes for Cara's hydrocephalus and delays. This process is pretty intense and starts with a very complete family history and discussion with the geneticist. Usually, genetic mapping is done, as is some pretty extensive blood work. I have called and scheduled an appointment for the earliest available time. Would you believe that we have to wait until DECEMBER to be seen in the clinic?! The wait is going to be unbearable! We may try to find somewhere else to go, but I really trust the expertise of Children's, so we'll see.

2. Cara is to have another MRI to check for any increase in pressure or fluid in her brain as well as to check for any signs of malformation. She hasn't had one since July of 2007, so it's a good idea regardless. I am waiting for the order to be processed by the radiology department at Children's and then will call tomorrow to schedule the scan. This should be done in the next few weeks, so at least we'll be able to rule out anything "structurally" wrong relatively quickly.

I am trying to get a grip and stay positive, but darn it, it's not easy! The cards just keep staking up against our poor little girl. I just have to keep remembering...That which doesn't break us, makes us stronger! That said, Cara is already a strong little girl in mind, body & definitely spirit!

Rest assured, everyone, that I will be keeping you all posted as we continue the quest to answer the questions around Cara's delays.

It's Good Karma

There's good karma in the air around here today. No sooner had I posted about Cara's speech concerns did I receive a phone call from the neurology clinic at Children's Hospital. The neurologist who saw Cara before (one of two who saw her) has an opening NEXT Wednesday! Woo hoo! We just might get our answers sooner than we thought!

Orthopedic Consult

At the request of Cara's physical therapist, we met today with an orthopedic doctor to discuss whether Cara would need the assistance of leg braces or supportive shoes in order to walk. This appointment was booked back in December because Cara was not standing or attempting to crawl in addition to walking in our her feet, slightly.

I am proud to report that since then, Cara has improved greatly (another post with, hopefully a video, will be coming shortly) and the doctor believes that she is progressing nicely and will walk in the next 3-4 months, without assistance! I'm so thrilled, one hurdle overcome.

We are to meet with her again late this spring to reevaluate. If Cara is still not walking, we might need to re-think and come up with a new strategy. But for now, everyone seems happy with the amount of progress that Cara has made.

Let's do the "no braces dance"!

The Good, the bad and the best!

The Good:
-I got a job with the Aurora Library. This means that, eventually, I'll be able to get these annoying, pesky creditors off of my back and I'll be getting out of the house!
-There will be "flexible income" again.
-We will be moving back to the city!
-I got hired despite a bad reference from a former boss (see below).
-Two of my dear friends gave me glowing references (thanks Jeanne & Jana).

The Bad:
-I was offered the Library Clerk position instead of the Library Assistant.
-The pay that I ended up being offered was about $4/hour less than was discussed at my interview.
-After paying day care, my take home will be a mere few hundred dollars.
-I found out that a former boss gave me a bad reference and had me panicked thinking I wouldn't get the job.
-I have to put my baby in day care and do not know of an upstanding one--time to do research. (Caitlin will return to the preschool she attended before)
-We will be 5 hours away from my parents, again.

The Best:
-The girls & I will be living with Ben again.
-We will be a family again, all under one roof.
-Ben & I have worked on our "differences" and what happened that fateful day in August & have mutually decided to save our marriage.
-I will be close to many of my wonderful friends on the Front Range.
-Did I mention that I will be getting out of the house?! Don't get me wrong, I love my girls but I think I'll be a much better mom if I'm not home with them 24/7, 365. Both will also benefit from the socialization that preschool/day care provides.

Well folks, that's the skinny. Now, even though I got the official offer...I still have to pass a background investigation, credit screen, drug test (shucks, no more poppy seed muffins) and have a physical. Other than the credit screen (for reasons mentioned in previous posts), I have no worries. What can I say except--WOO HOO! This good news came at the perfect time, the day before my 29th birthday!