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.

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 hydroinutah@gmail.com

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.

2010 Carter Shields Open

Its getting warmer and plans are underway for Carter's 2nd Annual Golf Tournament here in Tooele. It will be held on July 31, 2010. We have chosen Oquirrh Hills Golf Course. If you are interested in playing, donating, sponsoring a hole or donating a raffle item please email us at hydroinutah@gmail.com. We also desperately need all those wonderful volunteers that made last year possible. Proceeds will go to Hydrocephalus research to help families like ours have a better life and someday possibly ending this debilitating condition. Thank you for your support. See you on the course!

Hydrocephalus vs Hearing Loss

Since birth, Carter hasn't ever been able to pass a hearing test. At 6 days old the hospital gave Carter a hearing test and he failed. They came back with a more intense hearing test which he also failed. The hospital staff said "Carter is deaf, he'll be deaf forever, we're sorry" and left the room. It was heartbreaking, we were prepared for deaf but oh how we weren't prepared to hear those words for real.

So we took home our deaf newborn and we treated him like he was deaf, he really never responded those early days like he could hear. Then our wonderful home health nurse (who has worked with Hydro babies for 20 years) came in and I cried to her about being deaf, she said "he's probably not deaf, every Hydro baby I've ever worked with starts out that way until their pressure is under control" that was hopeful news but we still thought he'd probably be deaf forever.

At about 3 weeks old, I yelled down the stairs to Jordan while Carter was asleep in the next room and he startled awake, we just thought maybe he felt the vibrations. After that he would startle at any loud noise and a few weeks later he was responding to even a quiet voice. We had proof that he WAS NOT DEAF. But to this day Carter can't pass a hearing test.

Carter's been through all the hearing tests: AOE, BEAR, booth, sedated, non-sedated, blah blah and he fails all. So on his medial record says "profound deafness" but Carter can obviously hear. He responds to everyone who speaks to him, he looks to his name, he copies some words, he loves music. He dances to music that I don't talk about, he can hear.

So last week his ENT took him into surgery for Tubes. He said that is the first step to rule out any fluid. (lets face it, fluid is usually the problem). His surgery went well, they scheduled him to stay the night for observation because he usually dies during surgery. But this time it went better then expected. He was on his way home 1 and a half hours after the surgery. Wahoo!

So next step...another hearing test. If he doesn't pass that then he'll have to get hearing aids. If then he doesn't pass then he'll have to get implants. I'm extremely against implants because it destroys any and all natural hearing that he has. The ENT said that he cant hear at all, but I strongly disagree. Everyone who knows him strongly disagrees as well. So stay tuned for the implant battle.

Hydro Mom Tip: As a newborn Carter come out deaf because of the pressure. The more people I talk to, the very common this is. A lot of our little hydro friends have grown out of it or only need hearing aids. I am so glad we didn't get implants like we were advised from our audiologist.

My Amazing Walking Little Man

Our little man is Walking! Carter has far exceeded the expectations that his doctors have labeled him with. This milestone which is “unreachable” by definition of most. He has defied his odds! The celebration which most take for granted. What a miracle! A child who “would never walk”. This is definitely a renewed hope and strength and maybe, my labeled child just might defy many more odds. So we will continue to dream, love and share. Maybe this may help another, one who has been told to expect nothing to have hope and courage to keep expecting. Carter’s challenges make his triumphs greater and often his weaknesses are accompanied by amazing strengths. Let this be a lesson for me not to take these little things for granted for those little things are the things that matter the most.

Riddle

What do you get if a 2 year old...with special needs...with life threatening condition just needs a few stitches?

1- Several ER Attendings

2-Anesthesiologist3-Respiratory Therapists4-Several ER Nurses5-A tricky Sedation method6-A few thousand dollar ER bill (not to mention a pissed off 2 year old) I guess if we pray for a 'normal' boy thats what we will get. We decided to skip out on church on Sunday and have a relaxing day, well little Carter fell on the corner of our bed and split his bottom lip open. We knew by the amount of blood and how open his lip was that it could use a couple of stitches but we didn't know how anyone was going to get those in. If you follow baby Carter's story we know that he cannot be sedated or he goes into full respiratory arrest with most of the narcotics and sedatives. So our cute ER attending was beside herself not knowing what to do. She decided to try Ketamine (a sedative that doesn't make you loose consciousness). Well, it was quite the production for just 4 stitches.