Happy Feet

No not the movie, but Elias really discovering and becoming VERY into his feet. He loves to raise them up and stare at them, then kick anything he can. Last night in his playpen he was playing with his triangle toy using his hands and mouth while kicking a light up spinning top. All the while watching what his feet are doing to the top in the mirror on his playtime pyramid. It was multi-tasking at its best and he was loving it! Yesterday during the day, Elias was having one of his days that come about every so often. On these days his secretions are very difficult to manage, usually thicker than normal and cause him to become a little overwhelmed. This generally results in him spitting up frequently. It takes a lot out of him and he is usually miserable and lethargic the entire day. It is always tough because we can never assume that it is happening because it is “one of those things he has.” The episodes are very reminiscent of his pre-nissen days of reflux & aspirating. We have also, since the Nissen, seen feeds in his trach when he has the violent vomiting from the issue. So we just always have to be on guard and closely monitor him. Days like those are very tiring and intense. Fortunately they come and go within a day or so and not a sustained activity.

We also had our initial intake assessment with our new state’s version of Infants & Toddlers (early intervention program). Fortunately, they did not require much from Elias, mainly questions and paperwork. I was called around noon yesterday saying they would be in the area and could come out in a few hours before another scheduled appointment they had. They were only allowing themselves a little more than an hour between. Having been through this process before I knew what they would be asking for so I warned them that Elias had a complex medical history that would take some time to cover. They were not phased and insisted on still coming. Well they were less than patient as they obviously realized very quickly they would not have enough time. Not to mention the starting and stopping I had to do to tend to Elias’ extra needs yesterday. We did manage to get through the process, but it was slightly pushy. The next step is Elias having to go through another developmental evaluation to determine what services he needs. Then another IFSP meeting. From my visit yesterday it seems like the program here is a lot more rigid in structure with specific parameters that carry a bit of a cookie-cutter feel. I think it will work out fine, but there was some reservation on their part about the hearing element for intervention. They actually told me they do not provide that service, so it seems we are going to have to seek out another resource for this. I will be investigating this further to ensure the information I got was accurate, especially because they seemed so uncertain. It just amazes me how difficult all the processes have to be and how much they vary from state to state on a federal mandated program.  It simply makes it difficult to make sure as a parent your child is provided for appropriately. Granted, the program is not mandatory, but there is always a strong push from all angles to ensure a child is in the program. I’m just saying can’t we just keep it simple without all the variations.

We also began our search for a pediatrician in the area. We received a few recommendations from the FA clinic. We may have one that is willing to take Elias on. We are awaiting a phone call to let us know for certain. Hopefully, it will work out as we also need a completed physical by a local physician before we can begin services in the intervention program here. The quicker we can get that knocked out the better. Elias seems to be doing much better today so I’m hoping the next few days to get some more photos of him enjoying his new home and surroundings.