Sunday, September 30, 2012

Orthodontist Consult

Children born with clefts usually require lots of orthodontia, which for Rachel, is the next leg of her journey. 

Rachel has a permanent tooth that is crooked, and we really just needed some direction for the future. So I made an appointment recently to see an orthodontist known in our area for her expertise in treating kids with clefts. 

After some X-rays, and a peek inside, the Orthodontist sat down with me and showed me Rachel's xray and penciled in what teeth she has in, waiting to come in, ones to watch, etc.

After much discussion we found it best to continue to watch a couple of teeth, and wait until she's a few years older before braces.

A set of braces prior to the next BIG surgery, which is a jaw realignment, are very important. That set of braces will straighten out all the teeth and align everything perfectly in anticipation for surgery.

Dr Garcia was a huge help, and told us not only can we check back in every summer (once a year consults are free) or as our regular dentist takes X-rays, I'm welcome to bring them in for her review so we can be ready when the time comes!

Saturday, September 29, 2012

Chairi I Malformation Diagnosis

When Rachel fell and hit her head the night before school started, we brought her home to monitor her, but the moment she threw up, we went straight to urgent care. Head injuries are nothing to take lightly and I knew throwing up was serious.

After some simple neurological motor skills were performed, the Pediatrician ordered a head CT Scan, to rule out any sub-cranial bleeding, or other injury as a result of where she hit her head (the back).

While the head CT scan came back negative in regards to any further injury as a result of her fall, it did come back that a brain anomaly (abnormality) was found,  specifically a Chiari Malformation could not be ruled out. We followed up with our Pediatrician the very next day and he sent us for a neurologist consult.

We saw the neurologist a few weeks later and he ordered a full set of spinal x-rays, a brain MRI, and a c-spine MRI, all to rule out any brain malformations, any spine malformations, and Spinia Bifida.

The Xrays we did immediately following Rachel's appointment. The MRI's we had to first wait for the authorizations from our insurance and then get the appointments scheduled. She had the MRIs on September 7th.

I knew what to tell Rachel in regards of what to expect for these major tests as my Mom has had the very same tests done in the last six months, both in which I accompanied her into the room for. I was so proud of Rachel, she laid perfectly still for both tests, which was about 45 minutes.

Last week, I spoke with Rachel's neurologist on the phone in regards to her results. While the MRI's were negative for Spinia Bifida, and any other issues, the MRI's did confirm Rachel has a brain malformation called Chiari Malformation.

Because this was found on 'accident', via the head CT Scan, her specific diagnosis is Chiari I Malformation. She's been asymptotic all these years and the diagnosis wouldn't have been made other than by accident, such as the CT Scan as a result of her falling on her head.

When we first learned of the possibility of the diagnosis, I contacted Rachel's speech therapist. She's very knowledgeable in a vast area of medical things, specifically anything related to clefts. She assured us that this condition is fairly common among kids who have been born with clefts. And while we were  confident that if a diagnosis was confirmed, she's been perfectly normal the last 8 years, and we knew if she did have it, it wouldn't be something to worry over. But it was comforting to know it's a diagnosis sometimes seen with those born with a cleft of some sort.

This website, Chiari I Malformation, gives a very simple, yet very helpful explanation of it.

Our Speech Therapist said the information is good to have. It's nothing that needs to be kept out on the dresser of our brains so to speak, but definitely kept in a drawer. It's important information to give to any surgeon and anesthesiologist who touches Rachel in the future. It's important information they need to know in order to position her head when intubated for any future surgeries.

We have a return appointment with the Neurologist on November 1st, just to follow up.

Thursday, September 27, 2012


I've really slacked on my blogging in the last year, and I've really missed it. If you're a follower of my personal blog, A Place of My Own, I wrote yesterday that I came to the conclusion I just need to blog and not try to catch up on the things that have gone on in the last eight months since my last entry.

Our life has been busy and Rachel is now 8 years old and in the 3rd grade and has a lot going on in the last two months since school started. The night before school started, while we were at the school looking at class lists, Rachel was playing on the hand railing and slipped off and hit her head. After taking her home to keep a close eye on her, a trip to Urgent Care was made after she started throwing up. So Rachel's 1st day of school was actually the second day of school.

It's hard to believe, but Rachel turned 8 on August 31st. We had the family over for dinner and cupcakes that evening. Unfortunately, during the day we had my grandmothers funeral to go to. But the next day, we took Rachel to Legoland with our family who recently moved here from out of state. She had a blast and loved every minute of it!

There's some other things to update as far as Rachel and something that we stumbled upon by accident, but that's another whole post in itself. But for know, my hope is to get back into regular blogging!