Friday, June 26, 2009

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.


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