Parker is adjusting to new things this week and we are adjusting along with him.
He was released from the hospital as scheduled on Monday and went directly from neuro-surgery to have an electroencephalogram (EEG) for an hour.
It was a relief to have him home again and not having to split affections between the hospital and our apartment.
The next day started early with a trip to the dermatologist to deal with a rash he had developed while wearing the head bandage. Upon arriving to the dermatologist, Dr Robin was awaiting Parker & Renee with open arms & french kisses. He was very pleased with Parker's responsiveness and almost surprised at how alert and curious he was.
This was followed by a trip back to Necker to meet with Dr. Kosorotoff (Manoelle) in Neurology to read the previous day's EEG. She noted that there were still some irregularities showing on the readings but that clinically he seemed to be doing much better. She also confirmed that he will remain on Micropakine (his anti-convulsion medication) at least for a year and we should especially look for convulsions on his right side. She was concerned and inquired as to whether he was withdrawn but indicated that clinically he seemed to be doing well. She also wanted to insure that Parker was doing enough therapy since he seemed in a state to receive & respond to therapy immediately.
After Neurology, PJ visited Dr. Couloigner who asked us to bring the CD from the MRI in so that he could have a clearer image. He spent some time looking at them and informed us that there seemed to be some fibrosis in both cochlea which is a precursor to ossification. The decision on whether to do one or two implants was still under debate. We have an appointment with Dr. Loundon, the head of the ENT service at Trousseau (the hospital where the surgery will be performed) next Monday in order to come to some conclusion on this.
Wednesday was Dr-free
Thursday the day started early again with a visit first to the ENT psychologist where she observed his reactions playing with toys. Parker was in fairly good spirits so we attempted to get him to whine (at the request of the Doctor) by putting him on his stomach but instead of whining he rolled to his back-- that was a first since the surgery. In general Renee has an issue with psychologists as she feels they are going to try and interpret every aspect of what you are doing or what you say. As such Renee was determined to remain calm, composed and tear-free during the meeting; she almost succeeded.
In the afternoon was a trip to the speech therapist who is trained in working with cochlear implants in order to make an assessment of his state. She encouraged us to increase all levels of communication with him and recommended supplementing with sign language and also mimic him whenever he does make sounds so he can see it. We still have to determine whether we go with American or French sign language-or both.
Later that afternoon he got his hearing aids. This was a step for us as externally he had few signs that there was anything wrong, even the scars from the surgeries are already fairly well hidden in his hairline. We had the choice between "embrace-it" black and "discreet" beige; we chose beige. They are hard to get into his ears and he complains a bit as we but them in. If they are not correctly positioned they make a chirping noise that sound like a mix between a car alarm and a cricket....or frogs in a marsh. If Parker doesn't remove them from his ears Penelope will find some way to take them off so we hear the chirping noise quite a bit. The chirp seems also to turn off when the ear part of the aid is used as a surrogate pacifier so there is a level of constant surveillance that we need to maintain as there are several choking hazards involved with them. We have not been able to fully ascertain their effectiveness in providing a sense of sound to Parker, sometimes he seems to react but sometimes he does not so it may be random head movements. After two days Renee is already fatigued with using them but we will press forward.
Like Renee, I am feeling the strength and help of others this week. After taking two weeks off from work for vacation and the surgery, I had quite a bit of work to do including several early morning meetings which precluded me from taking the girls to school. Sarah was still in the US for her sister's wedding and Rachael started a new job on Monday. With all of the doctors appointments and visits we were concerned that we were under-staffed. Between me at church Sunday with the girls and Renee making a few phone calls from the hospital we had a renewed outpouring of support for every day we needed, with a few extra hands to spare.
It has been a difficult week for me to be sad. While there were still challenges to face this week and not all the news was good, PJ being home and his smiles coming spontaneously when you look at him has made me feel like things are ok. It is not that I am searching to be depressed but sometimes I feel that I should be sad when his twin sister is crawling everywhere, standing almost on her own and starting to verbalize syllables. Sometimes when people ask me how things are going and I explain he just got out of the hospital, he is deaf and we have another surgery to go, it feels like I need to seem very concerned. Sometimes with people who are just hearing about our son or who I haven't spoken too since he got sick I feel I need to explain the history in some detail, but I tend to do this less emotionally, although with a sense of hallowed reverence. I know all children are cute but he is such a beautiful child when he smiles and it gives me a sense of enduring happiness.
While I severely doubt my tear-shedding days are behind me forever, I realized that other people need a chance to show sympathy and express their emotions. As they become aware of the chain of events or when they enter the story at it's current chapter, they need to have their own hopefinding process.
The one time I was fairly emotional this week was when I came across an e-mail written to us two months ago with the link to a blog for another child with pneumococcal meningitis. I had purposely not read this when I received it as I really didn't feel like anyone else's experience would be the same as ours and basically I was not emotionally mature enough to try and deal with someone else's tragedy. As I read it this week, the parents of that child were very positive and while their, at the time, 9-month-old son started his journey more than a year before PJ I found so much of similarity in their process; the initial missed diagnosis by a doctor, the intubation, the seizures, the shunt, the deafness, lack of smiling, the cochlear implants. Then I saw other things too; temporary blindness, NG tubes, profuse sweating, continued neurological posturing, lack of articulated motor functions, limited smiling. I felt a measure of guilt that my beautiful boy can reach up and grab my hair while he stares into my eyes, that he can eat food, that he can rip his hearing aids out, that he can cry and has even given us a little laugh. So I can fully accept it as perfectly normal that some people will feel a certain sadness for Parker, his situation, and the path that he has had to tread. As for me, this week, the tears I shed are for others not so fortunate as us.
