St. Louis, ST, OT, and GI... Oh My!

Happy Autumn! Where did the time go? Hard to believe October is just a few days away. I am sure most of you are enjoying the changing leaves and the cool crisps evenings that come with the season of Fall. 

Tropical Storm Isaac (later Hurricane Isaac) cooperated and allowed us to attend the family reunion in St. Louis for Ann's maternal side of the family. It was a whirlwind trip over Labor Weekend but well worth it. We were able to introduce Tristan to his great aunts and uncle and also to some cousins too. Ninety percent of the family members were able to make it and those who couldn't were missed and thoughts of often throughout the weekend. Unfortunately Tropical Storm Isaac followed us to the midwest, so many of the outdoor plans were canceled. No matter! It was a great weekend anyway. We plan to make a trip back to St. Louis July 2013. The Lutheran Church's Synodical Convention will be held there next near, so we hope to be back for that.

I've had several people ask me about how Speech Therapy is going. In a word, "fair". Could it be better? Yes. Could it be worse? Yes. The key is Tristan, himself. And yes, I'll admit that we could work a little harder too. Tristan has developed such a fear of any kind of healthcare provider that his defense mechanisms are extremely heightened. He distrusts almost everyone to the point that quickly spirals into a "fight or flight" response. Just driving to the doctor's office or therapy office causes Tristan to get anxious. He looks out the car window and watches the route we are taking. If it appears to be the same route, he starts to breathe quickly, starts to whimper. Next thing you know he is gagging and vomiting in the car. The other day we were driving to the store. It was the same route. Before we could even get to the store, he threw up. We had to turn around, returned back home to change his clothing and then went back to the store. That's how crazy his anxiety is. No matter how many times we said, "We are going to the store", he could not calm himself down. Don't get me wrong....it is getting better. The last two times he went to OT, he cried less than 90 seconds and went to play. Truthfully, we laughed  (crying was not an option) because Tristan got himself all worked up, but within 20 seconds was happily playing with the therapist! All that drama in the car for nothing! 

I am learning that language is going to come slowly for Tristan. He is just not that interested; no matter the reward. For example, yesterday I brought out a laundry basket. We hide them in our house because Tristan LOVES getting a ride in a basket. He squeals with laughter and throws a huge fit when you put it away. My back starts to hurt from carrying a 25 lbs child in it, but he doesn't care; he wants another ride. Anyway, I brought out and knew immediately he would want more and more and MORE rides. So I put him in it and gave him a quick ride. Placed the basket down and asked, "More" or "All done"? Giving him a sign for each word. I asked him 3 times and then took his hands to form the sign more when he fused because I wasn't picking up the basket. I forced his hands to make the sign and said, "Okay! I'll give you more!" and gave him a ride. Gene and I did this for over 45 minutes. Do you think he ever made the sign for us without us having to do it hand over hand? NOPE. When we just sat there waiting for him to give us a sign, he would just look at us blankly or start playing with the sides of the basket. That is how stubborn my son is. Later, we moved to the water hose outside. As some of you saw from the video on Facebook, he LOVES feeling the water on his hands. Once again, we did the same routine...."More or All done"?.  We did this again for 30 minutes. Never got him to sign it once.  We stopped spraying the water for him, so what did he do? He walked away to explore something else instead! Patience....he is teaching us patience. 

Today we went to see his GI specialist. The last visit was 3 months prior so weight gain and height increase was to be expected. During the 45 minute car ride down to West Palm Beach, Tristan got anxious and whimpered. Thankfully, he never threw up. Got into the office and started to cry. He really didn't like to be weighed but did not get to the point of vomiting. While we waited for Dr Stephens to come into examining room, we played with Tristan on the floor with some toys we brought and feed him some cheese and crackers. Here is the irony....When Dr. Stephens walked into the room, he started to cry. It lasted maybe 30 seconds. Dr. Stephens has a son about 9 months younger than Tristan. He is really great about not touching Tristan for the first 15 minutes of any exam. He always asks us his questions first and gets all the info he needs. So here, Tristan was anxious all the way down to the medical office, he cried when he got to the office and for 30 seconds when Dr. Stephens walked into the room....then what? He started playing with Dr. Stephens. Tristan would walk up to Dr. Stephens, look at him, squeeze his knee, and run across the room laughing. Over and over again Tristan did this. It was hilarious. Tristan works himself in anticipation of something but once he's there, he's fine.  We are hoping this is a short lived phase and it will get better.

His weight today was 25 lbs and 3 oz. Height 34 and 1/4 inches. Dr. Stephens was happy with his wt and ht ratio. He would like to see Tristan eating more solids by mouth but okay with how Tristan looks. G-tube continues to be out of the question and we won't return until January for another visit unless we see weight loss or anything of concern.

Tomorrow, Amy (Ann's sister) comes into town for a quick visit. I know Ann is looking forward to it and it will be another chance for Tristan to get to know his Aunt.

As always, we thank everyone who asks how Tristan is doing and we appreciate all the love you show us and him.