Some Pix from this past month

We have been busy this fall. Here are a few pictures. Note how smiley he is....makes me smiley.

Halloween.

Loves his tractors and trucks.

I believe there is more paint in his hair than on the paper.

Getting loved by Sis.

Grumpy about being loved by Sis.

The next Kidd Rock.

Happy Happy Happy

Tyler is doing great! We had a good MRI the other day and got the all clear to make the next appointment in January. So hopefully we can make it that long and have a medically quiet holiday season.

We have a busy 2 year old for the first time!

Since we tweaked Tyler's shunt in the beginning of September, we've seen a whole new Tyler. With in a few days Tyler started to over all look better. His color and eyes brightened and his appetite picked up again. His eye sight started to improve too. The last couple of weeks have been an interesting transition for all of us to the world of boy 2 year olds. He's finally into everyone's business. Poor Rachel gets the brunt of the whole deal. Tyler loves to get into her face and push her buttons. She finally broke down last week and announced that she doesn't like Tyler anymore. 2 and half years into this ride and the normal 2 year old stuff is what she complains about. Gotta love that girl.

We've lived September up to the fullest since Tyler has been feeling better. We took a day trip to the Boston Children's Museum and spent the better part of the day taking turns chasing two happy kids around. The best part is, the two kids where able to get away from each other and have a couple of hours with one of us and then after lunch we switched kids. We've taken a couple of short hikes into the nearby nature preserve. Ducks are a huge hit with Tyler. He could watch them for hours. We also finally got to Story Land this past weekend. Wow, was that a hit with the kids. The smiles on their faces when we where on the rides was amazing. Tyler found only one ride he didn't come off smiling and after the fact I realize he shouldn't have been on it because of size requirements. But as we were twirling around, he just nestled deeper in my side patiently waiting to say, "Get off Turtles please". But being able to drive his own tractor and antique car well made up for turtles.So we have been busy living a normal life punctuated here and there by a few doctor appointments. We saw neurosurg last week up in Dartmouth. It was a very good visit. Everyone was excited to see how well he responded to the shunt tweak and that his eye sight was definitely improving. We go back up late October for another MRI and followup. The surgeon wants to keep a closer tab on it to make sure Tyler's fluid doesn't move around so much and create symptoms again.

We also took a trip down to meet someone at Boston Children's for a second pair of eyes on Tyler's condition. There seemed to be a bit of miscommunication of why we were there. We were hoping to find someone who would look at the images and confirm we haven't missed something and who was willing to work with our surgeon at Dartmouth. Although he did remind us of facts and information about hydrocephalus which was useful to hear from a different perceptive, it wasn't quite the meeting we were hoping to have. The main point he made was, it doesn't matter a bit where the fluid is in Tyler's head. What matters is that he's acting like he's suppose to.

And he's one hundred percent right. I could give a rat's bum where the fluid is. I just want Tyler to always have that mischievous glint in his eye, that incredibly infectious laugh, and his love of life that seems to permeate his whole being. So for now, we ride the wave of good days and if and when we see Tyler start to look off, we will head back north for another tweak.

Brain is full

Today Tyler had a MRI and a visit with the neurosurgeon. Ben and I are not thrilled. Basically the fluid dynamics in Tyler's head are unchanged. The ventricles are still too small and there is still fluid on the outside of his brain. The ventricles won't expand because there is fluid on the outside of the brain keeping the pressure up which means the shunt works. The fluid on the outside of the brain won't go down because the ventricles don't have the ability to expand to push the brain matter back thus moving the outside fluid out. We don't have any more clear answers as to why Tyler isn't able to see depth correctly and why his eye won't converge properly. Currently the theory is that the fluid on the outside of the brain is putting a bit of pressure on the part of the brain that controls eye movement and that impacts depth perception.

So what is being done? We turned up the shunt all the way so that it takes a lot of pressure for the valve to open to release fluid in the ventricles. Hopefully that will allow the ventricles to increase in size, push the brain matter back, and squeeze that outside fluid out of the way. We will have another MRI in a few weeks to see what's going on with the fluids. If that doesn't work we are looking at more surgery and the addition of a second shunting system for the outside fluids. This is were Ben and I are really questioning this plan. We are talking about getting a fresh pair of eyes on this problem. I get the feeling that Tyler is charting new and eventful ways of doing this. What an amazing kid!

Eyes look good.

We had a very nice visit with the ophthalmologist today. It was very helpful to have our eye therapist at the visit as well. With a quick check, it's determined that Tyler's eye issues look to be neurological in nature. His optic nerve didn't look swollen or other wise damaged. The ophthamologist doesn't want to correct any muscle problem that causes the eye to wander and the problems with depth because she suppects that Tyler's neurological stage is still out of balance. So another call into neuro to set up a MRI and appointment hopefully next week.

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.