This morning we had our FEES test. This is a swallow test with a fiberoptic camera pushed up the nasal nares and down to the top of the throat. I think they forgot to numb his nose like they said, but they just shoved the camera up there before we could really comment. Elias was NOT a happy camper. It too awhile for him to calm down and he never really did, but it was enough to eat a tiny bit of green dyed applesauce. It was cute to watch him, but unfortunately I was too busy standing at the ready suctioning while Katharine held him as best she could. They did not get to do any liquid, but they felt that they achieved the looks they needed to clear Elias for very small amounts of nutritive stimulation as well to keep things working and to avoid aversion. While this does not mean that Elias is anywhere near being cleared to eat anything by mouth, he can under very controlled conditions work on tiny volumes of taste and develop swallow skills. He actually did very well with swallowing. He is ready, very ready unfortunately his airway and the risk associated with oral feeds is not. It was fun to watch him take two tiny spoonfuls of the applesauce and make it disappear. He was adorable as always, but it also made us feel as though we were teasing him. By the time the test was over, which was only about 10-15 minutes total, Elias had worked himself up so much he literally passed out asleep in mommy’s lap. We were glad to hear such positive results.
On to some not so good news. We have continued the BAHA trails and are still not achieving any sign of stimulation. We have emailed the audiologist hoping for some intervention prior to meeting with ENT which is not for several more weeks. Our fear right now is that they will acknowledge the ABR is for some reason skewed, but that repeating the test is out of the question because if sedation risks. This would simply push us into another direction completely of intervention. We are praying that someone will review this and come up with some explanation. For now we just have to continue the way we have, but it is frustrating.
We also got our record review back for our early intervention team of therapist. We were not granted what we requested based on the therapist recommendations. In fact the review teams recommendations made no sense at all. Fortunately their decision while final in terms of number of units does not have to be allotted in the manner they propose. With that said, to intensify the number of visits for the focus therapies, OT, PT, & Speech we completely dropped the developmental interventionalist from the team, which is a general therapy cross covering the previous 3 mentioned. We can then divide those units among the three remaining and achieve close to what we really need. I think what was bothersome about that process is that we had to be the ones to present the idea of dropping DI. It was not even discussed as an option. What if other parents who may not have thought of this were in our situation, then their child loses out. It is another example of having to be smarter than the programs in order to advocate properly. I understand that they are under tight and sometimes deficit budget constraints, but the therapist comment all the time how very few parents are actually involved and work with the children on the skills to master between sessions. So why take away from the children who are pushing and achieving. Why limit the amount of success these children can have with these positive interactions. A child can be held back through the lack of intervention as much as it can be wasted by having it too often. As long as significant progress is consistently being shown then why not reward these children with more incentive through interaction and help the parents achieve what they want for their child. It is equally frustrating because at age 3 you are no longer eligible for the program. You transition to the public schools. In cases like Elias, who has spent the majority of his first two years in the hospital why penalize him for that by reducing the amount of overall time he is given. We are essentially cramming 3 years worth of early intervention therapies into just a little over a year. Medically fragile children should not lose out on precious time because they were hospitalized. If they were not in the hospital to begin with the program would be providing. It is not like it is free either. Our insurance does get billed for this. If a child is unable to use the units for a period they should roll over into the next so that you do not have to limit the child. Thanks for listening to my soapbox and advocating speech for medically fragile children. Not as well worded as I would like, but packed with emotion and raw! Fight For The Children!
Otherwise, things here are pretty much the same. Therapies, appointments, meetings, no sleep, and lots of Elias playtime. The past few weeks have been rough with changes and issues, but we will work around them as always. We are thankful for how well Elias has been thriving. We do wish this airway slump would remedy itself soon. It takes so much out of him and really holds him back. Despite that though he really gives it his best sometimes regretting pushing himself in the end. It is just in his nature to push and keep going no matter what. He gets that stubbornness from us and we love it.