What's the plural of diagnosis?

Since Dylan's surgery many new friends and old friends that never got the whole story have been asking what exactly is *up* with our little girl. I have been meaning to type things out but I haven't had a chance. Now, with this quiet moment (you'll notice a lot of my posts come at about this time, Nap time) I thought I would type it out. It's good to have it on 'paper' anyway right?

When Dylan was born at almost 31 weeks they tried to put a feeding tube up her nose and found that there wasn't any room. As a result of that, her nose became inflamed and closed off and she had to be intubated. They did a cat scan and found that her nares were small, she had Pyriform Aperture Stenosis. Also they found a single central incisor which can be an indication of Holoprosencephaly so they ordered an MRI which came back inconclusive.

We did genetic testing and found that Dylan's missing a part of her 7th chromosome, the Sonic the Hedgehog gene (yes, it's named after that Sonic). It's a pretty important gene that is in charge of lower spine, kidneys and brain.

They scanned her kidneys which are fine, and her back, which was not. Turns out she has a mild form of Spina Bifida. She has Sacral Dysgenesis which means some bones of her sacrum are missing (3 of the 5) and Sacral Agenesis, which means what she has left isn't formed properly. The bones kind of split like they didn't come together right. She also had a tethered cord. These back problems indicate bowel and bladder problems but right now she's just as incontinent as she's supposed to be.

She was in the NICU 89 days, half of it spent at Primary Children's which was where she had the Pyriform Aperture Stenosis repair. She was the smallest baby that the ENT had performed that surgery on. After that but while still in the hospital she got spinal meningitis.

She's not an eater so she got a 'button' in May but she has actually started picking this up. A little late to the party, but hey... she got there right?

In June she got extremely sick with an infection. they did an MRI and found a nasty cyst on her spine. (That's when I started this blog to keep everyone updated). While she was there they repeated the MRI of her brain and also did a 3d cat scan of her skull to check on her sutures. They discovered that her metopic suture, the one that runs down your forehead, had closed early which would need to be corrected. Those 3D cat scans are very cool, I need to get those images on a disk to have forever. Not everyone gets to see their skull right?

After a month of IV antibiotics they decided to go in and resect the cyst tissue and untether her spinal cord in August. They also schedule and completed the Cranioplasty to correct her forehead. So on her very first birthday she got her 4th and hopefully final in-patient surgery. (Knock on wood...)

She also has a common heart defect, an ASD which she might have to have repaired in an outpatient procedure when she's 2 or so.

We finally got the results of the repeat MRI a few months ago when we found out that she doesn't have a forebrain. This very important part of the brain controls a lot of your reasoning, among many other things. There is no seperation between the two hemispheres of her brain which is what Holoprosecephaly is all about. We also found that she has very small optic nerves but her eye sight doesn't seem to be impacted which is good. The Neurologist told us that if someone saw her scans and then met her they wouldn't know it was the same baby. So she's doing great. That's the amazing thing about brains, a lot of time the unused parts try to make up for what's missing so you just never know.

We also get to visit Trina at her office every couple of months because it appears that Dylan's got a serious lack of growth hormones and her thyroid isn't functioning properly. We have meds for the Thyroid and the shots with hormones are coming soon. Boo! Hiss! They will help with her low muscle tone though, maybe at some point she will be all over this place like her brother!