Fun in the Sun!!!!

P-Man taking a break from jumping on the tramp

Road trip pit stop at Crystal Springs

My gang!

Last week we had another follow-up visit with the NICU Clinic at Children's Minneapolis. It was a really long drive, but with Grandma K's help we all survived. We all had a slight cold, so it was a long trip to and fro. We broke the trip into 2 days on the way back which helped alot. So to set the stage for our appointment, we arrived in Minneapolis on Monday afternoon (after a 6 hr. drive) and spent the night with my brother-in-law and sister-in-law. We were awakened in the middle of the night by a large storm which knocked out the power and wripped down trees galore. We then returned to bed for a few more hours of restless sleep and woke up early to get to our appointment. We were all tired and a little stressed.


The developmental pediatrician had some info for us that reminds us that our kids continue to be and always will be affected by their prematurity. First of all for Kylin's assessment. She scored a little behind on the developmental testing, falling into the range of about 17 1/2 months rather than the 19 month (adjusted) range. She was unable to put the pegs in their proper holes as fast as they would have liked and she had trouble with the puzzle but eventually was able to figure it out. Her speech is behind, but progressing and she is getting it figured out day by day. She isn't able to get herself off of the ground when she "jumps" yet, so that also put her behind slightly in the gross motor area. The pediatrician commented that we may be 6 months or so away from being tubeless in the eating department. I am cautiously optimistic, because as all toddlers do, she has good eating days and then horrible eating days. Kylin was very cooperative with the developmental testing and the physical assessment. She weighed 20 lbs. 11oz. and was 30 1/2." Overall the pediatrician was pleased with how she is doing and commented that she will likely always be a tiny little girl.

Preston's appointment was difficult since he was tired and crabby. The first part of the developmental testing involved writing with pen and paper. Everyone who knows Preston knows how into paper and pen he is and that you don't take it away from him. When the therapist wanted to move onto other testing, he threw a royal fit. He threw the cubes across the room and hit the table and screamed and arched his back etc . He refused most of the testing by yelling or throwing objects and at one point he banged his head on the table in a fit of frustration to get the pen and paper back. They had all sorts of suggestions for us regarding books to read, DVD's to buy etc. to learn to discipline this "frustrated child." I will admit that he was a mad man, but he is not always like this. We were out of our environment, tired, a little sick, and we couldn't have our way!!!!!! The developmental pedicatrician then comes in to do his assessment, and Preston was settled down, but busy moving about the room checking things out and climbing up and down the chairs etc. We were told that he may benefit from a "sensory diet. since he is "overactive." I wasn't sure what the diet involved, but was told that the EI folks could help us to design a sensory diet for Preston. More about sensory diet in a bit. Preston weighed only 20 lbs. 7 oz. and was 31" long. They commented that because he has been under the 5th percentile for his age all of his life, that we may want to consider treatment with growth horomones when he nears 5 years of age. I was a little anxious about this, but we will wait and watch to see where he goes in terms of growth.

Back to the "sensory diet", I came home and researched here is one definition I found..."The sensory diet, a term coined by OT Patricia Wilbarger, is a carefully designed, personalized activity schedule that provides the sensory input a person's nervous system needs to stay focused and organized throughout the day. A person whose nervous system is on "high trigger" will need more calming input." So as I continued reading, most of the time they referred to children with ADHD and Autism requiring sensory diets. I was so worked up about this last week, but after talking with our EI therapists who see my kids in their own environment every couple of weeks, they assured me that they feel there is nothing atypical about his actions and that they see no signs of any problems other than the fact that he is a very busy, nearly 2 year old boy. We are trying to work to calm him when he gets upset and frustrated and teach him to say what he needs, but he is a little young to communicate feelings very well yet. I have been continually watching Preston in the presence of other kids this past week, and I feel quite confident that he is very typical especially for a boy.


This past weekend we spent Labor Day at our friends' lake home in MN. We had a great time, and the kids loved playing in the water and in the sand on the shore. Preston has no fears, and he took a nice little walk right off of the edge of the dock. It freaked his Mom out, but after catching his breath and spitting up the water he swallowed, all was good. Kylin played with a fish caught by the older kids, and squealed with delight when we helped her "jump" in the water and had fun wrecking the kids' sand art. Both of my kids are nervous in the pool, and Kylin has been nervous in a tub of water for a long time,but they had no problem with the lake water and enjoyed it immensely!

In October Kylin and Preston will turn 2, so I have been working to get them to tell us how old they are. I am happy to report that they both now hold up their index fingers on each hand and say "chew". Preston finishes his response with cheers and claps.

Overall, we had a very enjoyable summer and our kids have progressed so nicely while discovering the outdoors. Hopefully we have a nice long fall to enjoy before the cold of winter sets in.