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.

Sunday, November 30, 2008

Go Shorty, it's your Birthday!

Talk about texture therapy

What a nice boy to share!

Bug played with this "hair ball" for like an hour in the store and just loved it.

Too much texture perhaps

We're still traumatized

Saturday, November 15, 2008

Trying to Crawl

Here is Bug's attempt to crawl, where there's a will there will be a way, right!?!

Monday, November 3, 2008

Saturday, November 1, 2008


Look again...yep its them!
Hula Dancers (or drag queens)?

Our little lion!

More Halloween Pics

Tuesday, October 21, 2008

We get around!
Stop! Pillowtime!

Tuesday, October 7, 2008

Mom vs. Dad

Who won the First Word Battle? All that work and who get's credit?

Monday, September 22, 2008



Drum roll please...we raised $1,688.00 for research for the Hydrocephalus Association! We came in 2nd place for the most money raised and 1st place for the most people who came out and walked! I'd like to give an extra special thank you to those who have donated, those who went out and raised funds for us, and those who came out and walked with us. Your support will be forever remembered and your love is forever planted. You have made a difference in these children's lives and the outcome of their futures, thank you so much!

Thank you Amy & Jaxx, Pam, Chelsea & Gavin, Susan, McCoy & Cooper (By far the winners who came out ahead and still looking great!)

Thank you Bill, Anita, Melissa, Michelle & Steven (A couple of rest breaks, and a questionable lead)

Thank you Dave, Tonya & Garrett (1.4 miles, no big deal right?!?)

Thank you Mark & Pat (hurt foot and still smiling)

Thank you Jen & Jensen (Glad you found us!)

As all was said and done, who was worn out?

I just want to send out a special THANK YOU to all of you who donated who couldn't come out and walk. Thank you so much for all of the donations you gave and funds you raised, we feel so blessed from the support you have shown to our family.
All Teams

Wednesday, September 10, 2008


I just wanted to Thank everyone who have donated so far, we really feel love and support from all of our family and friends, we've collected $825 which is so great! Well there's only 10 more days of fundraising until our walk and we'd love more donations, so go out and bug all you know. We've got pledge forms if you need them, just let us know. So our walk is a week from Saturday at Sugarhouse park (just off I-80 and 1300 East) from 8:30am-1:00pm. They say there is fun stuff for the kids and a lot of them will be on trikes and scooters and bikes. So it will be a morning of family fun (I guess, we've just heard, we've never been). Again, thank you so much for working as hard as you have to help our family and so many more who are effected by hydrocephalus.

Monday, September 1, 2008

Dirt Bikes, School, Colds and Teeth

Eric & Jordan ganged up and won the dirt bike battle. Doesn't he look cool!?! He hasn't ventured out of the garage yet. (shrug) Maybe we should get more insurance?

J also started school this week and he loves his new teacher, two good years in a row, can't beat that. Funny story, on Wednesday when he got home I asked if he had any homework, he said that he only had his spelling words to study for Friday's spelling test. I said to get them out and we'll practice them together. He said that he didn't need to practice because 'he's a great speller and it would only waste his time to study spelling'. I said that he should probably study them...just in case. After a brief argument on how it's important to do his homework, he kept insisting that he knows it all and studying would just be a waste of his precious time. So I thought I'd pull one over on him and I said that we would go over them once and if he didn't make one mistake then he wouldn't ever have to study spelling words again (I had this one in the bag, they were hard spelling words). He smirked and happily agreed to the deal. We went over 26 very tricky words and to my amazement he sailed right through them, no mistakes, not even a hesitation. Those darn tweens, just as promised I put away his spelling for the week. On Friday he came home with smiles from ear to ear test in hand, the big 100% right on top! Good job J!

Well we've been battling a little cold this week. Carter started throwing up and having the yuckies on Wednesday, the next day he woke up with a stuffy nose and fever. We took him in to the doctors and he only had a viral infection. Its really hard because most of these symptoms are signs of a shunt infection, so we were put on major shunt malfunction watch for the last few days. Luckily we woke up today and had a great day. We are definitely getting better. YEAH no hospital stay this time!

So the oddest thing, Carter has 4 teeth now, two bottom and two vampire (eye) teeth, anyone ever heard of that?!? I thought they get those two top teeth next. He also learned how to grind those pearly whites! I've seen Eric heeby-geeby every time Carter gets his mouth's orchestra going, it's pretty nasty but it makes me giggle.

Tuesday, July 29, 2008

Hi Everyone, well a lot has been going on. We are planning our first TEAM CARTER hydrocephalus association walk to help raise money for research for those of us who are affected with hydrocephalus every day. Our biggest complaint is that no shunt is forever. As you know Carter will need a shunt for the rest of his life. His body will reject some and others will get infected and so on. We have met several children who have had somewhere between 40-80 shunts before they go to Kindergarten. Every time the doc's do surgery on the brain we run a risk of more brain damage. The researchers are working so hard to create smarter shunts that last longer, also shunt alternatives. So we would love you to come out and support Carter on September 20, 2008 at Sugarhouse Park.

Well we broke our first tooth, his bottom front. I tried to get a picture of it but he like to stick his tongue out so we have no picture.

He's cruising around all over. He is still not holding his heavy head up but that hasn't slowed him down. He's rolling and rolling and rolling. He can get across the room this way. He also tries to crawl (with his head still on the ground) he gets his legs just a movin and drags his head moving forward. I guess where there's a will there's a way, right!?!