Friday, June 18, 2010

Medical Update

I guess its time for a medical update. Conditions/Problems/Resolutions/blah blah

Hydrocephalus: Carter's pressure is under control and shunt is working nicely for now. His shunt anniversary is January 4, 2008. Its pretty rare for a long shunt life, especially a shunt thats been recalled. But his is doing well. Many shunts fail due to blockage and infection. Bodies are designed to fight off foreign items especially long plastic tubes in the brain. We feel blessed to have such a long shunt life so far. Many of our Hydro buddies have had hundreds of shunt revisions.

Macrocephaly: Well the definition of this is just simply a large head and a few other traits, so needless to say Carter still suffers from this. The only way to fix this is a Neuro Cranial Reconstruction Surgery. At this point, it would be mearly cosmetic with huge risk, so we are passing on this for now.

Cortical Vision Impairment: We just went to our Ophthalmologist who we see every few months. He just declared Carter's CVI totally resolved! Carter's had eye muscle surgery in January 2009 for ocular misalignment which worked beautifully and he now has super straight eyes. They usually veer back but Carter's hasn't so far. He's been patched for about a year. He's also had vision therapy once a week since he was 3 months old. Something must have worked because CVI is now resolved!

Hearing: I just posted this but here goes again. Carter just got tubes placed April 2010 then a few weeks ago he passed a very extensive group of hearing tests with flying colors! NO hearing loss, wheew. Crossed this off the worry list.

Physical Therapy: We are still going to Shriners, but we took a few months off to let development kick in. I am a big fan of letting Carter do most of his learning and exploring in a natural environment instead of a therapy room. We mostly get direction from our therapists and then we practice in a natural environment just like all other children learn these valuable things. Here's our milestones
~1st Smile: 5 weeks
~Rolling over: 6 months
~1st Word: 11 months
~Holding Up Head: 15 months
~Sitting Independently: 16 months
~Pull to Stand: 18 months
~Cruising: 19 months
~Crawling: 20 months
~Walking: 2 yrs 4 months
~Running: 2 yrs 4.5 months :)

Feeding Therapy: Feeding is always our battle, he's eating a bit more then before. All food must be of slight texture and must be dry. He's still staying alive on Ensure bottles. Lots of Cheetos, dry cereal, crackers and on a lucky day he'll try my cooking. Sometimes Eric and Jordan are brave enough to try my cooking as well.

Speech Therapy: Carter is very behind on speech, he said a bunch of words at about 12 months old and one day he quit saying all words. He's back to saying about 4 words now, just since the tubes. We are seeing speech therapy twice a month.

Occupational Therapy: This is still an important part of our week, we try to put Carter in a group setting with other children or in a chaotic setting (such as the Luau) and he has a total meltdown. The sensory part of his brain doesn't know how to filter so chaos over loads his system. We work with our wonderful OT to teach him how to handle this kind of stress. This is a big task for Carter. Needless to say he has a hard time really going anywhere. He's also very schedule oriented. If we throw off his normal schedule he has a hard time recovering.

Beans: He had double Hydrocele Inguinal Hernia surgery in January 2009. All is well in that department, he gets embarrassed if we talk about this too much.

Developmental Delay: He tests on about an 18 month old level in most areas. There are a few areas that he is on target with a two year old but there are a few areas of development that he tests much lower. But for the overall test scores he's real close to 18 months old.

Monday, June 7, 2010

Luau for Carter

This Friday June 11th the World Class Fireknife Dancers "The Mulivai Brothers" are going to hold an event in Carter's honor. They will have dinner starting at 7:00 pm followed by their famous Fire Dance Show! All proceeds will benefit Carter's Hydrocephalus Fund. It will be held at The Benson Grist Mill here in Stansbury Park. Dinner menu includes: Teriyaki Chicken, Kalua Pork, Dinner Roll and Rice. Adult price is $10 Children price is $5 and families are $35 which includes both dinner and the show. We would love to see our families, friends and neighbors there. No need to RSVP just bring a friend and come out for a great night. Hope to see you there! Questions, email us at

Thursday, June 3, 2010

Just another day

Our hearing battle is over! Carter was put under general anesthesia today and given 2 extensive hearing tests. He was given a sedated BAER and OAE and passed with flying colors. The audiologist said his hearing was in the normal range in both ears. So no hearing aids and no implants, what a blessing! So why couldn't he pass a hearing test? Maybe because he's 2? Maybe because he doesn't like probes in his ears? Maybe because he can't sit still that long? Anyways we may never know. Here he is just waking up.