Well we survived the weekend without incident. Elias is having a grand time being home. We do have some adjustments to get use to, but overall not much has changed in his care. We did reduce the number of medications he is on now down to four from nine! That makes things a little less hectic too! Yesterday was a day full of paperwork from the Nursing agency and the equipment company. I think we signed a forest full of trees. We had an orientation with the one nurse that they have assigned to the case so far. She was here for about 6 hours yesterday. She seems nice, kind of quiet, but the agency brags about her like she is Florence Nightingale, we shall see. So yesterday was the first official day of home nursing and what better way to start off on the right foot than to have the nurse call off for the only shift we have covered. AWESOME! I’m sorry but it is so hard not to be cynical when you almost expect it. As for the staffing for the other hours, well not much progress still just continuous empty optimistic promises from the agency telling us how hard they are working to find people. Again we shall see how this plays out I just hope it is soon. The need for both of us to be working again is becoming more and more critical. We obviously incurred quite a bit in unexpected expenses in the last three months. We are keeping the faith as always and praying a solution shows itself.
We have been extremely busy these past few days. It seems there has only been a few moments here and there to catch a breather. We had to redo Elias supplies, out with the old in with the new and reorganize the supply closet. It is becoming more likely that rearranging his room might also be necessary to make everything functional. We are working to minimize that process. We have been able to enjoy some of this time at home with Elias as he is exploring and playing. He has gotten to the point he is doing so well with sitting up that he wants to do it as much as possible now, that is exciting. We have also caught him trying to get himself up from the prone position to an upright. The PT at the hospital had been working on that with him but he was NOT a fan of it. However, there were several times over the last few days we saw him trying it. We just need to work with him more and I think he will get it very soon. The biggest issue is his arms and hands and the inability to weight bear as much, but his core muscles are becoming so strong that he should be able to pull up from the sideline position with minimal weight bearing need. That will be an exciting day when he does that. Once Elias things are all complete then we can focus on getting ourselves caught up around the house. Even though the days are very busy ,the nights are long, and sleep is a luxury we are delighted to be here. It has been wonderful to be here and watch Elias thrive and play.
We get a few weeks off before we dive back into follow-up appointments. We have three scheduled early December and we are working on several others that are priorities. Otherwise we are holding off until after the first of the year to add anything else to the plate. We are simply burned out with that right now and need some time to rejuvenate. We want to thank everyone for their tremendous showing if support during all of this. It has been particularly rough mentally for us since everything was so unexpected. It has been your love, thoughts and prayers that have helped us get this far without completely going insane. We just want everyone to know how much we appreciate all that you have done for us.