Shutterfly

Well this is an opportunity that we can't pass up. Shutterfly is offering free holiday cards for a few words about them on our blog. If you would like more info on this promotion:

click here

I can't say enough how pleased I've been with Shutterfly over the last 5 or so years now. I've used them for lots of picture prints ranging from our wedding, places we've been, children, Christmas Card and Birth announcements and everything in between. I tried something new this year and fell totally in love with it. I took photos of all the projects Rachel did in school and uploaded them to create a wonderful book. I also love the quality of their Calenders (they make great gifts). I will be starting to sort which of the many photos will be honoring our calenders this year shortly. As well has the long process of getting 2 camera shy children to give me a least 3 cute photos for our Christmas Photo Cards.

This is their most popular pose

Tyler is far more willing to give me a smile

Rachel most often has to be bribed.

I hope everyone enjoys the holiday season this year. We are in full holiday swing here and very busy making Santa lists, avoiding elves, and planning fun activities.

Skills and Schedules

This post is dedicated to Tyler's therapist. She has worked so hard over the last two years with him. Tyler has fought us tooth and nail with some of his skill sets for the plain reason of him not being interested in it.



Let's take stacking blocks for example. For the last year and a half we have been trying to get Tyler to stack more than 3 blocks up before he knocks them down. Yes, his eye hand coordination does make this difficult for him. And the boy urge to knock things down is incredibly strong here. But we know he can do it because we have caught him alone in the playroom with a built tower before. Well today, I got rare video of the stacking. He can stack what 8-10 blocks!!! Better watch out Tyler, we are on to you now.


Puzzles have been another point of contention. I've told the therapist for weeks that Tyler can manipulate a puzzle piece from a puzzle we just picked up on loan from the library and get it in the correct slot with minimal physical help from me. These are new to Tyler puzzles. The one yesterday was taken out of the bag 5 mins before this video was taken for the first time. See how he can turn the fire coats around and get the piece in all by himself. Also another skill that we can see him exercising here is scan and seek. We have been working hard to get him to find a specific object within a batch of objects (usually we only have four images to find one image in). Again we utilize the puzzle here. Ask were the fire dog is and he looks at the board and points with accuracy to the dog. There are 10 images on this board.

So I guess our lesson here is to capitalize on practicing skills on Tyler's schedule. Long story short, nothing really new here.

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.