There have been a few new things for her though. First of all, Monday she got her first shots of Botox in her calves. Ellie has had a tight heel cord since birth. Her foot wants to stay in a "toes pointed" position and it is very difficult to get her foot to a 90 degree angle. We have combatted this since birth with foot splints, AFOs, and lots of stretching. But the last six months things have gotten tighter. This coincides with other tightening in her arms and legs, but also progress such as smiling and cooing. So, there have been some good things that came from her increased tone, but also bad things. We finally needed to address the heel cord problem when she started to get skin break-down on her heel.
The Botox shots, more commonly used for cosmetic reasons, will relax her calf muscles, in turn allowing us to stretch the heel cord and gain more range of motion. We are praying this will work well for Ellie as the other option is surgery to clip or lengthen the heel cord. We also have an appointment with an Orthopedist who will decide if some casting of Ellie's heel will help as well.
Another new thing for Ellie is that we have been pursuing getting some daytime nursing for her. I have been working with agencies, red tape, and paperwork trying to get some nursing approved for her for about 4-5 months. Things are finally moving forward, and I am starting to get optimistic that it might actually happen. I have had a nurse here a couple of full days this month, and it has been incredible for me and the boys. We are able to enjoy and spend time with Ellie, but without all the extra work of equipment, feedings, treatments. We have also been able to leave the house and do some fun things.
It has been quite a journey for me learning how to care for a special needs child, meeting her needs as well as those of the family and also myself. We went from night nursing when she was an infant, where I felt displaced in my own home, like my motherly duties were ripped from me. I know it was necessary at the time, as her needs at night were too much for us to handle, but I had a hard time bonding with Ellie, always wanting to prove that I could do it myself.
We then went to no nursing, which I think was great for our family. Ellie was on the same schedule as us, the boys started to open up to her and be more comfortable with her, and I felt like I gained confidence in taking care of her.
But since Hannah passed away, I have felt the need to take care of myself and the boys more actively. I was just surviving, torn between caring for Ellie and caring for the boys, never feeling like I was doing a complete job on either end. I also could admit to myself that cleaning out a suction canister was not necessary for me to show I love Ellie :) Someone else could very well do the many tasks of cleaning and suctioning, and I could still hold and enjoy my little girl. So this led me to finally surrender and ask for help. We shall see if and when that call gets answered.
It is interesting to look back at all the emotions we have had and lessons we have learned from Ellie. She has taught us so much about life, ourselves, about accepting help. I have a feeling the lessons will continue.