Today was Kerstin's first day going back to school after being home for a week with respiratory issues. Last week was really rough. There were many nights that sleep was almost nonexistent. Kerstin was given breathing treatments and CPT around the clock. The girl is a tough cookie! She is my trooper!
"Manic Monday" was exactly how our morning started off! First thing, I had in my mind that today was the day that her Baclofen increased again. That was NOT the case, the day is tomorrow! She will once again increase, this time going to 1 and one half tablet, crushed and softened for g-tube administering. I am so glad that I looked at the calendar on my cell and saw that the actual increase is tomorrow.
Second, after her bath this morning, I went ahead and switched her Scopolamine patch. She wears one behind one ear for three days and then it is switched to the next ear and on and on. We get to school and she's having therapy, therapist is working on some neck stretches and there is NO patch behind her right ear! I can only assume that I attached while her skin was still too damp.
My issue with both of these instances is that insurance paying for the meds too soon is always tricky. She will run out before time. That's another issue for another day. I am just glad that she was able to go back to school today! Even if she did doze off in class!
More to come...
I know there are some that may not be aware of many of the lyrics of now deceased rapper, Tupac Shakur given the image and reputation he had while alive. However, he had songs that inspired many and seemed to have spoke about their lives during that time. One of his songs with the same title of this post, "It Ain't Easy" seems so relevant to my life right now.
It ain't easy...proper grammar, it's not easy, being me! That is the hard truth! It is so hard sometimes to get out of bed to start a day that is not much different than the day before. Sometimes we dread the unpredictable moments that disturb our days. It may seem weird to actually want that. My smartphone dings as reminders every few hours. I know that my daughter has to have a certain medicine at a certain time. Along with that, it alerts me every three hours that it is time to give her a bolus. If you know her schedule, you know exactly what I'm doing at a certain time.
It ain't easy, to get the day started when I have to work with her spastic muscles and at times a very strong case of asymmetrical tonic neck reflex (ATNR) while attempting to dress her. How about on a cold winter morning and it takes over 7 minutes just to get a long sleeve shirt on her. The tug of war comes again when putting her in her safety belts once in the vehicle. You should see me standing there sometimes, rubbing her arm and singing to her just waiting and hoping she will relax soon. The resistance is so strong.
So, to all the doctors, teachers, annoying school administrators, therapists, whomever, understand it is NEVER intentional for us to be excessively late, it just happens that way. It ain't easy raising a child with special needs! It may appear controlled, if you only knew the half.
It ain't easy, but we do what we have to do because there is no other way! Just have a little patience with us!
More to come...
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