I was impressed with the Easter Seals building out by the airport. For some reason I was expecting a dingy government building like the social security office or DMV, but it was nice and cheery. They got us right in and physical theatpist Jill and development theatpist Jillian evaluated Leo. It was basically just playing with him. Overall physically he scored at a 2 week level and he is 11 weeks, but they said not to be discouraged because he was showing good signs of wanting to take the next steps. She said he was doing a good job holding his chin up. They also said they would expect delays in any baby who spent 51 days in the NICU. Socially they scored him at 1 month basically rating his ability to communicate his needs and respond to interaction. For his first 3 months he will only go PT once a month. She said with his breathing issues she just wants to focus on positioning and range of motion. She is concerned that his head is flattening and gave us a special chair to work on sitting him up straight. She said they also don't want to burn too many calories at such a young age. He will do feeding and developmental thearpy biweekly for now. It sounds like long term he would get all 3 weekly. We will also continue daily excersises at home. Overall, I was happy with the therapists, but there seems to be lots of red government tape around the process. For instance, we have to set these goals which outline the plan and if we want to stray from the plan (like meet more often) . We have to get the whole team back together to discuss and approve.
Moving onto appt. two....our drive to Peoria was I uneventful (yah!). Our first step was to get an x-Ray to check for chylothorax. That meant going through hospital admitting, but it went surprising well and we were 1/2 hour early for our appt with the surgeon. Unfortunately, surgery was 1/2 hour late calling us back for our 1:15 appt. so we did nothing for an hour and would not make our 2:00. They called the Pulmonologist for us and they were ok with us being late. Surgery said his g-tube site looks good but he was ready for an upgrade in buttons. The new one has a longer stem in the stomach and a larger balloon that holds it in place. At first it seemed really loose and wobbly, but now it seems close to the other one. Terry actually did the insertion of the new one himself so we should be ready if it comes out again. They were happy to hear he is not spitting up or gagging. The biggest news is he will start breast milk in one month. We will just ease it in slowly instead of a 100% switch. I think they would have let us start BM right away, but we said we prefer to be concervative since it leaked after a month the last time. The x-Ray looked good. No fluid!
Appt. 3......The Pulmonologist is really nice and flexible. Since we were running really late, he randomly showed up at our g-tube training in the surgeons office and did His appointment right there. He thinks our two episodes with oxygen needs were just secretions that Leo could not handle and basically choked on. He showed us how to put saline in his nose and suck it out and also said we should get a nose Frieda for another suction option. He also was annoyed that the vest hadn't arrived and wants him wearing it twice a day when it does come. We are following up with him in about a month.
The best part of the day was that Leo got to see two of his favorite nurses from the NICU, Sara and Brittany. He decided to not cooperate at picture time :(. The worst part of the day was the drive home. The roads were really slick and two cars spun out in front of us on the interstate but Ter got us home safely.
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