Homework.

Tyler enjoying a rare treat! A Popsicle for lunch. Lucky boy. He's also sporting his new hair cut.

So tonight I have been putting a list together of all the hospital visits we've done this year. Tomorrow we see Tyler's eye doctor for his normal 6 month visit. We are hoping to hear some answers to why Tyler's ability to perceive depth has changed since June.

List of Events 2010

March 1- Our last eye appointment with dilation.
March 2- Tipped over High chair. subdural hemorrhage confirmed by MRI. Night of observation. Released March 3 without restrictions and acting normal.
April 9- After a week of flu like symptoms, Went in for a MRI. That night had 1st shunt revision. Same site, changed to a delta 2 valve and longer catheter. Discharged April 11th.
April 19th- Admitted again for leaking sutures. 48 hours of antibiotics and a suture over sew. Released April 21st.
April 28th- MRI and sent home.
May 13th-MRI and schedule surgery.
May 14th- Surgery for 2nd shunt revision. Move location to a frontal right with new valve and catheter. Closed up old site. Despite flu like symptoms released on May 15th.
June 1st- MRI- Showed smaller ventricles.
June 8th- MRI- Right side collapsed and so was brain matter. Left side near collapsed. Fluid now on outside of brain.
June 9th- Surgery for 3rd Shunt revision. Replaced valve only with a programmable valve.
June 10th- MRI and discharge. Very slight increase in fluid in the ventricles.
June 24th- MRI and looks good. Still smaller than baseline with less fluid outside the brain.
July 6th- MRI. Ventricles are near collapse again and more fluid on outside of brain.
July 13th- MRI. Ventricles are expanding again and valve was confirmed at setting before MRI.

Growing up and giving back.

We had a really long but good day up at DHMC today. We left the house at 6:45 for a 9:15 appointment with development, followed by a panel discussion on life in the ICN, and finally a meet and greet with some past and current ICN families. Along the way we picked up the most recent set of MRI images.

The appointment with development was a yearly follow-up to track Tyler's progress. He really wowed them with his vocabulary and speech. If you take into account all of his hospital time he has had his fine and gross motor skills are in great shape. We walked away more sure the his vision issues are holding him back and that we need to re-address his food intake. After his last shunt revision his eyes still don't converge as they should and it is clearly impacting his fine motor skills. The problem with food is that he still gets most of his calories from the toddler formula.

They said Tyler as developed some great coping mechanisms on his own though. He uses his eyes to get the big picture and then does most of the work by touch. Putting pieces into a puzzle, for example, he'll place the piece within an inch and look away while he slides it into the hole. They were happy to see how much he can cope with, but concerned that the scope of his vision problem does not seem to be going away.

After lunch we moved on to the Parent Panel for the ICN Parents Council. Sharron has been working with the ICN Parent Council since about a year ago. They organize events and programs to help ICN families like the March Of Dimes walk. The event today was a panel of ICN veteran parents talking to a new crop of ICN nurses about how they interact with ICN parents and families, and what they can do to help make life in the ICN more bearable. Sharron has done one of these before, this was my first, I was also the only dad on the panel. I had expected it to get emotional, dredging up all those memories, but it turned out to be rather enjoyable. Lots of stories, many about positive events in the ICN, or how some less positive events we handled in thoughtful ways.

We got some good questions and feedback so hopefully it was worthwhile to everyone. Tyler was in his element for most of the session, walking around the large table full of nurses flirting his brains out. Finally we went up to the ICN to meet some of the families that have babies in the ICN now.

Quick update.

Just a quick update, Neurosurgery says we are always welcome to have Tyler checked out. She did say that from what I'm able to tell her this sounds more like an eye doctor thing. We already have an appointment scheduled for Sept. 1st so we will just wait a little longer to see what's going on. Other than us noticing he is having depth perception problems, Tyler is happy, active, eating, and feisty.

Sad Day.

When we were leaving a particularly fun play date this morning, Tyler was pitching a very typical "I don't want to leave" 2 year old fit. As we reached the car, he stopped screaming and crying long enough to say "I sad! don't want to leave! I sad!" Broke my heart. He's told us for a while when he's happy, but today was the first time I heard him articulate sadness.


We've know for a while that Tyler was having difficulty perceiving depth perception as accurately as he did before his last shunt revision. We have been hoping that it would get back to where it was before so he could continue making his vision stronger. That just hasn't been the case. We called for his vision consultant to come out today with his therapist to hear her opinion. She noticed a marked difference for the worse in his abilities to converge his eyes, a head tilt is back, using touch to find exactly where things are, and an eye turn she hasn't seen this bad in about an year. And as much as I know that this would be confirmed, I still find myself a little sadden by it. I think I was hoping it wasn't as bad as I feared.

She did how ever say she doesn't believe its a cognitive issue. Yeah! Tyler is still making strong strides in all of his development that doesn't have a strong tie to a visual Que. And we see him trying to do what we are asking him, it just seems very hard for him and he stops after a few attempts.

We don't have any answers as to why. I know after all the things he's been through this year a few issues with vision is really not so bad in the grand scheme of things. Maybe tomorrow I can embrace that thought, but for now I am not able to. So, I wait by the phone for neurosurg to call and see what they advise. And life is kinda on hold for a short time until I can figure out a plan for who wants to see him and when.

Long over due!

The first penguin picture since November 2009. And yes it's the same penguin!



Tyler was slightly larger than this penguin when he was 3 weeks old.
He has fallen in love with this skirt.

He really is driving a bus!

Tyler driving a city bus.

Yesterday I took the kids to "Touch a Truck". Basically it's an assembly of all kinds of trucks and service vehicles open to the kids to climb in and explore put on by a charity organization. We saw loaders, dump trucks, ambulances, fire trucks, semi-trucks, police cars, UPS truck, back hoe, and buses to name a few. After 2 hours we still didn't get to see all of them from the driver's seats. Both kids loved it despite all the loud horns. Tyler wanted to be in the driver seat and often screamed when his turn is done. But he really did well waiting his turn and sharing the seat with his sister.
In an ambulance.

We have been busy with good days the last few weeks. Other than the last week were we have been dealing with a slight cold or teeth coming in, Tyler has been a happy active little boy. GI was very happy to see he had gained over a pound since our last visit which was in the middle of all the shunt revisions. Tyler definitely is much heavier to carry now. Also his arms and legs have chucked back up and the shunt tubing down his front is harder to see. That is all due to him eating non stop. He is still a very picky eater, but he is expanding his pallet slowly. He is still very formula dependent, but I did get the ok to drop the bottles of Elecare and solely feed him his splash now. Tomorrow will be his last bottle hopefully.

Tyler seems to be doing very well neurologically too. All the weird wobbles have seemed to stop, like I said he's eating and gaining weight, and he's very busy through out the day. What is more, Tyler is starting another speech explosion. He's asking for what he wants clearly and singing songs. He love "Row Row your Boat" and "Twinkle Twinkle". He also likes to play games. Rachel has been kind enough to include Tyler in her jump rope game. Tyler and I now swing the rope for her while she jumps in front of the rope.

Really the only clue to all the shunt stuff we've dealt with this spring is a change in his vision. It's a very slight change but it seems to be affecting his depth perception and abilities to see specific details in a busy visual field. He can still see very well, show him a person on a bicycle and he wants to pedal his bike. Or when a cat wonders in he sees it and names it correctly. He's unable to find the edge of stairs safely or look at a book comfortably to find a small picture. Plus his eye wonder is more pronounce since his ventricle collapsed. We still don't know if there is still fluid on the outside of the brain putting pressure on the eye bits. He isn't scheduled for another MRI until October. In the mean time he has a development appointment later this month and then an eye appointment. Our eye therapist will be coming out to the eye appointment to explain in those technical terms how Tyler's eyes have changed.
So in the mean time we will have busy fun days enjoying the summer. The water table and the kiddie pool have gotten some hard use this summer as well as the play house that I picked up. He still loves to climb the play structure and proceed to scare the day lights out of me. He thinks it's all in good fun.