Elias’ Day Out

Yesterday we had to take the Medicaid paperwork we were sent home with last week back to the office. We had to drop it off thankfully, no waiting around for hours. It was a beautiful day, bright sunshine, blue skies, and mid 70s temperatures. We thought it would be nice to let Elias take a car ride that did not end up at a hospital or doctor visit. It would also give us a chance to drive around a little and explore our new area a little bit since we really haven’t been able to do so. It was a nice ride out and the Katharine & Elias waiting in the car while I ran inside to turn in the papers. We took an alternate way home (God love GPS!) through a pretty rural section. It was a nice scenic drive and Elias was enjoying the trip. Later in the day we decided to get really brave and take Elias to Babies R  Us. We had our IFSP meeting first thing in the morning and were discussing strategies and outcomes for Elias. We discussed different toys that might work for him and ways for us to identify toys that would work for him. We took him to find a few new things to hopefully help motivate him to sit up longer and build strength to ultimately be able to sit on his own. This is not something we are able to do everyday because of his  immune suppression with the trach (not to mention being a pack mule of equipment/essentials), but he enjoyed for a brief period and then became fussy and tired. We did manage to pick out a few toys that Elias was drawn to. It was a fun first experience with him in a public setting other than a hospital. Other than making him very tired and a little cranky we think he enjoyed the outings as well. We are hoping in the fall we can take Elias to the local aquarium here. From what we have seen online about it, it looks very nice and we are sure Elias will enjoy watching all the different sea animals.

As we mentioned earlier we had our IFSP meeting first thing yesterday. There were four providers present at the meeting so Elias had a lot to check out during the course of our meeting. We have decided for now to  continue with his physical therapy starting immediately along with a developmental interventionist. She will sort of work the areas that an Occupational therapist would be covering, but taking it a step further in how Elias implements them in his daily surroundings. There will be a Speech Therapist as well to assist with the communication aspects of Elias development and it so happens the person we were assigned is very strong with feeding issues as well, so she will be working on this area too. For now a formal occupational therapist is on hold, but they will proceed with an evaluation so if and when we decide to implement that service the process is quick and easy. Our primary service coordinator was another fortunate assignment for us. She was an audiologist with Cincinnati Children’s before shifting specialties to her current role. She took a look at Elias ABR report for us and while she did not give many details and was careful not to overstep her boundaries she used her experience and insight to say that from what she saw there it appeared that Elias would be able to have some level of verbal communication. The only downside to the assigning of services is the program here does not include the hearing intervention specialties. We will have to find help outside the program, more than likely at CCHMC. We will discuss this hopefully with the ENT doctor this week on what his recommendations will be on this matter. Having met everyone now that will be on his team we feel positive that he has a strong skilled team that is going to help push him and teach us how to guide him properly down the correct developmental path. In six months we review our goals and strategies to determine if they need to be modified based on his progression.

Finally, this weekend will be a rest and relaxation weekend as we gear up for the next few weeks of an intense schedule with testing and appointments for Elias. Grandma O. is making a weekend visit too! It should be a much needed weekend free of commitments and constant work. We are looking forward to it very much.