August 2009 Penguin Shot

Fresh off the camera, penguin shots from this morning! Tyler is doing great. There really isn't a lot to say otherwise. We are having a full and fun summer playing and eating. He loves his food. He is pushing his wagon quite well now. Steering is a little difficult but everyday he gets more confidence with it. His award winning smile now shows off his teeth. Three the last time I dared to count. I think we had the shortest eye doctor visit in history. In and out in 15 minutes. His eyes look great, the wonder is getting better. He could still need the muscle surgery, but that is way off the schedule. Tyler goes in for his 15 month check up next week so I'll post the growth stats then.

The biggest news I can think of is Tyler was moved out of our room finally this week and into Rachel's room. Seems to be alright so far. Rachel thinks it's great her brother is "sleeping over" in her room.

We did go to the beach this summer. It was very busy. We had beautiful weather just about everyday. By the end of the week the kids where done and wanted to go home. Tyler did spend some time in the sand, he preferred to eat it than build in it. He also loved spending time in the kiddie pool. It was hard to get him out of the water.


Tyler is getting very confident walking behind his wagon. I don't think it will be long before he's off on his own. Can you believe about 5 months ago we were having a hard time getting him to sit up on his own.
This is the most infection laugh I think I've ever heard. His sister can get him to laugh this way at the drop of a hat.

He's Crawling!

One fast little boy! He's mastered crawling in the last two weeks. We are exhausted from chasing after him. He doesn't listen to "No" unlike Rachel did that this point. It's not because he doesn't understand, it's he doesn't care to listen. So we have been trying feverishly to child proof this house and he keeps showing us new whys where it isn't. Over the last two weeks we've seen him start to wave (I haven't been able to get that on video yet). We can hear "hello" and "bye bye" when he is waving. The other word we've noticed is "ball". He likes to shoot up an arm with a ball in it and loudly announce "Ballllllllllll". (again I haven't caught this on video yet).

As you can see by the pictures, he likes to get under the table and whack his head repeatedly and then start screaming for me to get him out. He hasn't read the memo that my back can't do that easily.




Rachel is sorta dealing with all this. She is a little upset that he comes over into what she has set up to play with thinking it was just out of reach from him. We've had a couple of green days, where we can tell she is punishing us for Tyler's actions.

More Peek a Boo

I couldn't resist uploading this video. Tyler adores his sister and Rachel is rather fond of her brother. I wonder how long that will last? As you can see they are doing great!

Finally some Summer Pictures

Today it was another beautiful day and the kids could go out and play. Tyler seems to like to play in the pond as well.

A month of follow ups!

We have been very busy with doctor appointments this month. Tyler had his 12 month wellness check, a development interview, neonatalogy, and neurosurgery on various days. To give you an idea of how fast he's still growing, he is close to a pound heavier since the beginning of the month. He's still doing 1/2 a pound in 2 weeks. Our last appointment, Tyler was 19 pounds and 14.5 ounces. That is a 1.5 ounces short of 20.

Not much was said at the wellness check with his pediatrician. Actually I didn't get a lot of my questions answered, like what does the milk intolerance mean and is the wheezing under control. In fairness these are not questions that can be definitively answered in one visit no matter how much a parent wants them answered. Other than that the pediatrician is happy with his growth and development. He suggested we start weening him from bottles and the binky. Obviously he isn't familiar with Tyler's itinerary of when to do stuff. The binky hasn't been a focal point since he could put things in his mouth and he's been drinking from a straw for 5 months now.

We had a long visit with development up in Lebanon the second week of June. Two doctors played with Tyler and asked us questions about what he does and how he does things. They were both charmed by his smiles and LOVED his belly laugh. He wasn't able to get into a sit yet and he still needed help standing up. Over all they were very happy with his progress. They confirmed that he is delayed and it looks like his head size is the biggest cause of the delay. He just isn't strong enough to lift his head and develop some of those motor skills. He is delay also cogniatively, but those delays directly tie into this gross motor skill delay. They place him developmently around 6 to 8 month in age. Remember he is 10 month gestiationally even though he is 13 months chronilogically. Gets confusing doesn't it. The cool part is, they think Tyler is developing so beautifully, they don't want to see him for a year.

We also saw neonatalogy that day. They were also very pleased at his progress. I believe it was decided he will be recieving the RSV shots again this fall and winter because Tyler is on and off an inhaled steriod for his lungs. This is probably the only good things about him wheezing. Until that starts up we don't have to see them again until September.

This week we saw neurosurgery and had a quick ride in the MRI machine. Please do not say "ride in the machine" while Rachel is in the room. Ben was just talking to Tyler about his MRI ride and Rachel heard it and got very upset. "Tyler doesn't ride in a machine, Rachel doesn't ride in a machine!" for the rest of the night. It took a lot of reassurance that she wasn't going and that the machine was only going to take a picture of Tyler's head. Speaking of the picture, it was beautiful. The orginal cyst that was pushing midline at the base is now all but gone. Midline is now midline again. This is really cool, because the cyst is no long abstructing his natural path ways for the spinal fluid (the fluid build up that lead to the shunt). We will never know if the shunt is doing the work or if he's doing the work now unless the shunt fails and Tyler starts having symptoms. But this could mean on the positive side, he'll never have to have a shunt revision (knock on wood!). The cyst in the forward area and his ventricle are not any bigger and it's ok that they are not significately smaller. The fluid between his brain and skull is now about normal which means things are draining. The brain all around looks like it's developing normally and right when it's suppose to. The cysts are damaged brain area and will never develop, but the areas around the cysts look like they are ok. So far it looks like the brain is compesating for the missing areas and we will contiue to closely monitor Tyler's physical and mental development. And the bonus is, we don't have to see neurosurgery either for a year.

This month Tyler has also made leaps and bounds towards full mobility. He is now getting to a sit all by himself, pulling to a stand at furniture all by himself, walking around the furniture, and not concerned about getting rug burn on his head to get from point A to B. I will now even find him standing up in his crib bouncing with joy. I'm afraid the gates are going to have to be installed soon.

A Wonderful Day at Dartmouth!

Did anyone ever think we would say "We had a wonderful day at Dartmouth!"? This was the first time we've made the drive up to Lebanon because we wanted to, not because we need to. We went up Friday night and spent the night at a hotel just to help cut down on the time crunch. This is the second night Rachel has spent up in Lebanon through this whole saga. Ben reads a compelling rendition of Green Eggs and Ham. Tyler also like to listen to story time. Granted he's trying to figure out how to get the paper and chew it.

It was up near our normal time today with a quick bite to eat at the hotel and off to the hospital. The walk registration began at 9am with an hour of meeting the other walkers, kids crafts, looking at the beautiful posters of ICN graduates, and general hobnobbing. We met a few of the doctors and nurses here and was able to chat with them. Tyler of course put on his best flirty smile and showed off. It's amazing how social this child is!

Around 10 we loaded up our Cadillac of a wagon and were off. By the way, this is the best wagon I've ever used. Both kids are strapped in and I love the canopy. The weather was beautiful, sunny and mild-great walking weather. Both of them were very happy to ride most of the way in the wagon.




About half way through the walk near David's House, the DaRT team landed a helicopter and parked a transport ambulance for us to meet and greet with. This is the first time since May 23, 2008 Tyler has seen the helicopter. I don't think this is the one he rode in, but does it really matter. He was even allowed to sit in the pilot's seat for pictures.










At the end of the walk there was a cook out. A few more of the ICN staff were able to come and meet and greet with us. The ICN is over booked today, they have more kiddos than bed spaces so many of the staff members were very busy. The people we did see all were happy to see us and especially Tyler. Tyler, despite needed a major nap by this time still have smiles and laughs to share.

The Parent's Council where generous enough to make posters of ICN graduates to hang around today event. Tyler was one of the babies. It brought tears to my eyes to see what a beautiful job they did with the pictures for all the babies.

This has been a very gratifying day for us. We want to thank all of those who sponsored us. We greatly appreciate your support! THANK YOU!

We Are Walking!

Saturday June 6th we are walking in the March for Babies up in Lebanon. This organization has done a lot to improve the odds of premature babies survive as well as research how to prevent prematurity. Without all this research, Tyler would have a different story. The technology and procedures that he needed to just keep him alive was mind numbing. The stuff they did to me to help ensure his lungs develop quickly and all the monitoring was all designed to give him the best shot at life. No one knows why my water broke. They can not even speculate on a reason. Another area the March of Dimes helps fund research in, is why there are membrane ruptures and the effects on the fetus. This is why we are walking. We appreciate any help you can give us.

http://www.marchforbabies.org/SharronBenRachelTyler















Tyler's Birthday Cake!















Tyler loving the small piece I gave him. He was covered in frosting.