Tuesday, December 30, 2008

Christmas Pictures

Bug is at the ribbon and paper stage.

Thursday, December 4, 2008

The Other Side of Hydrocephalus

Okay, I guess it's time to update the medical side. I've gotten a few complaints that I only post the positive side of our Hydro babe and maybe I should keep this blog a little more real, so we'll start it off with last night's ER visit.

We spent last night in the Emergency Room. Since Sunday, Carter has had a temperature of 101.5 or higher, we just watched it assuming it was the MMR immunization he had last week. (The doctor told us to expect a temp). Well last night his temp spiked to 104 and started to projectile vomit (vomit is not uncommon at our house at least a few times a day). The high temp and vomit spooked us and we took him in. So they ordered a shunt series, which is a CT and x-ray to make sure the shunt is working & placed properly. Those came back good, huge relief, no brain surgery this time. So they said the temp was probably caused by a viral infection. But during her exam she asked us about his Hernia. To our shock we didn't even know he had a Hernia. Apparently this type of Hernia happens at birth and everyone missed it for a year, no harm I guess, but this means we need Hernia surgery in the next few weeks. We are already scheduled for Eye Muscle surgery this month. Sigh!

We went to our yearly Neurosurgery appointment a few weeks ago, had another CT. Our ventricles have reduced in size, this is good news. More brain tissue showing and less CSF fluid, no optic area which explains the Cortical Visual Impairment. Doc says Carter looks great. Another appt in a year (unless we have problems, like last night).

Left eye turns out more frequently lately. We scheduled Muscle Eye Surgery for this month, where they will just nick the muscles in both eyes bringing the eyes straight, thus seeing the same picture with both eyes instead of two pictures. Good prognosis to have good vision by kindergarten with the help of 3-4 eye surgeries and a few moments with an eye patch, Rrrrr!

Stupid Immunizations...again, yuck! Developmental eval, delayed but not by much. Mostly large motor skills, but that was totally expected. We're moving along well. He's pleased with his development. Ordered us to go to wheelchair clinic soon, to be fitted for a new car seat, (we don't fit in a normal car seat without cutting off the air way, so we have to have a special one made). Next appt at 18 months old. (unless we need him...we always need him)

Craniofacial Clinic:
This will happen this Monday, they will evaluate his head, jaw line, cleft palate, etc. and how it will effect our eating, speech, hearing and so forth. We'll keep you posted.

Surgery Clinic:
We go on Tuesday for Hernia eval, we'll keep you posted.

Vision Therapy:
Oh, we just love Jen our therapist, I think she was put on this planet for the sole purpose of our vision problems. I give her so much credit to his development, she's amazing. We work on tracking, in & out, textures, stacking, sorting, etc. We see her once a week.

Feeding Therapy:
Vomit happens...So we work on gag reflex, food textures, mouth desensitizing, transitioning into solids. This is quite a session, probably our hardest. We go to feeding a couple of times a month.

Occupational Therapy:
We work on environment sensory, he doesn't do well in busy places like daycare, or restaurants, or grandma's house. He doesn't like the vacuum, blow dryer or shower. He doesn't like any sound that suddenly happens. He doesn't even like noisy toys or weird feeling toys. We work on all the senses, smell, touch, taste etc. Also small motor skills in these sessions, this is every other week.

Physical Therapy:
Going well, we are still not sure if we love her though. She quiet and doesn't really talk to Carter which doesn't work since we like people to warm up before we get touched. Bless her heart I guess she tries. She works on balance, sitting, crawling, muscle control, things like this. We see her every other week.

So that's our busy life. Carter is such a trooper through every thing we put him through. It's a bit heart breaking as parents to stand by and see your baby go through all of this but we know it must be done for his future outcome. Our overall goal: to have him mainstreamed by Kindergarten and starting down the road to be independent some day. He is such a strong little guy with such a sweet disposition, we feel so blessed by his health and development, we personally know many families are not as blessed as we are.

I will try to do better at posting the overall picture of Hydrocephalus and our challenges as well as our achievements.