Happy Birthday Two You

Parker and Penelope celebrated their first birthday today. It is hard to frame the past year in any kind of perspective that doesn't border on surrealism.



Penelope celebrated her birthday early by taking her first steps four days before. She is amazing in that she doesn't use a couch or a chair to get to an upright position, she just stands up slowly, then after a couple of seconds takes a few steps before feeling unstable and calmly sitting back down. I don't remember any of our other children doing that.



From the time of their birth I would have bet that Parker would walk first-- it would have been a more traditional crashing into walls and falling down walk, but he was too energetic to be held back. It will be interesting to see how he learns to walk. He doesn't show any interest in crawling but if you prop him up against a couch he will hold in place for awhile before a leg will bend or he leans too much to one side.



His hearing is not yet to the level that he hears voices (60 decibels). They are going to fit one more adjustment in to the implant before we leave but we probably won't have any kind of immediate reaction even then. The ENT doctors are amazing though; they have saved all of his data to a USB key and Dr. Couloigner, the ENT surgeon, wrote a detailed description of Parker's diagnosis in English and had Renee check it to make sure he was clear. They are all very excited for us to take Parker to the House Institute in LA-- I think we mostly want to take a break from all this.



One of the final hurdles we had to get through was the check-up with the Neurosurgeon, Dr. Puget. She had Parker do a CT scan previous to the appointment and the results were not all positive. It seems the ventricular shunt is working correctly and the ventricles are slowly draining. However, the subdural area of the brain where the first shunt was placed seems to have an increased amount of liquid from last time. The liquid seems to be clear so they are not concerned that it is infected but there is a risk of pressure on the brain. Dr. Puget was very positive on her clinical assessment of him and her initial reaction was to check on the liquid in September but she wanted to verify that with her colleagues. Early this week she confirmed that we were "released" to travel for the summer but we have an appointment with her on September 1 to determine if Parker will have another shunt surgery.



The weather in Paris has been heavy and ominous. It is not extremely hot--not desert hot-- but the air doesn't move and it feels stale and muggy where even the passing of the bus provides a welcome breeze. I think we are all ready to leave for the States, but I am personally anxious that we are going to be disappointed. We we are looking for a break, sort of a time out, and I think we may just be heading for a change of venue with added complications due to adjusting to new surroundings.



Parker met with Dr. Quijano at Garches last week who wrote up his complete medical history in English for us to take to the US. At some point she was interrupted by a colleague and she introduced Parker to the colleague as the "miracle child" in the way that indicates that he was well known amongst even those who had not met him. For me this is less reassuring than it is frightening as it makes me think that we take too much for granted still. As with all miracles, the farther in time you get away from it, the less miraculous it seems-- and we have had some pretty un-miraculous days... I suppose this is part of the process.



Sina, a dear friend of ours who moved from Paris shortly after the twins were born, told us that at some point in her life she never felt she had seen miracles. She decided to write down all of the little miracles that she saw. It was only then that she realized her life was filled with them. This same friend prayed earnestly from the beginning that we might learn the lessons we needed to learn from this episode from Parker's life, not from his death... Being so close to him on a daily basis it is sometimes hard to see our daily miracle, but we are searching for it.



We are also into an interesting phase in our interactions with other people. It is hard to describe what goes through my head when someone asks the relatively benign question of "How are the kids?" The easy answer, the safe answer, is "Great, how are yours?" Of course this answer is a fabrication that is used to protect both myself and the person who asked it. On some occasions I have taken the risk to be more honest, to tell them there have been some challenges, that some remain, but there is a lot of hope. The response to this is categorically in one of two camps: those who respond with a well-meaning "That's too bad-- I hope he gets better soon" and those that listen, understand and want to share your burden, sometimes sharing with you a little of theirs at the same time.



For those in the first group, initially I was frustrated and maybe disappointed at their complete lack of understanding. More recently I have felt a bit embarrassed for having put them in a position which they were clearly not prepared to handle. I am trying to be better at discerning who these people are and responding to their question with "Great, how are yours?"



This second, rather more restricted group of people--they are my miracles.

The long run

Parker is continuing to progress as we work through the scheduling challenges of his weekly routine.



On the physical side he seems to be getting slowly stronger. He does not whine any longer when you pick him up and he holds his neck up without any visible pain. He turns his head both ways but sometimes this movement is a bit shaky (ataxic is Renee's nurse jargon). His right arm was more heavily impacted by the illness but he is re-discovering the movement of this arm. He looks at the arm when it moves and Dr. Kossorotoff (the Neurologist) indicated that this is a good sign in that he seems to mentally recognize that the movements aren't exactly what he thinks they should be and he is trying to figure out how to fix that. She is recommending that we re-start physical therapy a couple of times a week in addition to occupational and speech therapy which he already has once a week as well as his cochlear implant adjustments every week to ten days. Previously he was so weak and tired that it really didn't do much for him to do PT but now this might make more sense.



Dr. Quijano from Garches also told Renee that we need to mentally prepare ourselves for PJ going to Garches four times a week in the Fall. This poses obvious logistics challenges to us but also it is emotionally draining as Garches is a long-term facility for severely handicapped children. Long-term is something we understand is part of the plan but are still struggling to fully accept.; "severely handicapped" we don't subscribe to.



Drs. Quijano and Kosorotoff are concerned that Parker will leave France for almost the whole summer and are encouraging us to find a treatment protocol while we are in the US.



On the hearing front things are moving slowly as well. Each week they turn up the strength of the device a small amount and test him. According to Dr. Lacourreye he currently has some hearing with the implant at 80-85 decibels. Normal speech is typically around 60 decibels which means he currently would hear only shouts and loud noises such as doors closing. We asked whether we could just turn it up to a much stronger amplification but Dr. Laccoureye was clear that this may be confusing, even painful and ultimately counter-productive.



The ENT people were actually fairly positive on us taking PJ to the US for a while. They recommended that speech therapy in English could be positive and that we could go to the House institute in Southern California which is one of the pioneers in cochlear implants. Dr. Lacourreye has provided us a USB key with all the relevant information on his cochlear implant information saved to it.



There is another little boy who Parker has been somewhat shadowing through all of this. The boy is about a year older than Parker and he contracted meningitis in early January, about a month and a half before Parker. He was treated at Necker, lost his hearing, is followed at Garches and had cochlear implants all about 45 days before our little boy. We had heard about him from the various doctors and even seen him at Garches where we would stare at him with reflective inquisitiveness observing each shaky or slow movement, the recently grown out hair leading to some gender confusion but covering the antenna attached magnetically to his head and most of the wires with the faintly visible, now familiar flickering red light of the ear piece hard not to focus on. A week ago Renee met the boy's mother coming out from Dr. Lacourreye's office and although they knew nothing of each other, they both opened up and shared deep feelings without reservations as they recognized in each other mirrored scars of a battle they were continuing to fight. How this other mother was before, we don't know. She was more dynamic and hopeful for the future than Renee had pictured her although she confided in Renee that she saw no signs of hearing in her son and she was seeing a therapist once a week for herself. She also spoke of the changes in her life, her family's plan to move into the city so that they could be closer to the necessary care, her advocacy for children with implants and victims of meninigitis. We were reminded that we were in this for a while and there are other people who are on the same path as us, and maybe there was still some changing left to do.



As summer approaches we are going through a familiar routine of intense activity in anticipation of a general evacuation of Paris. Every year we run into end-of school activities and presentations, friends' birthday parties on every day of the weekend until July 1, people travelling through Paris dropping by for a visit mixed with the normal chaos of our first June with 5 children. Adding to that the additional stress of almost daily visits to a medical professional for Parker, a work schedule that rarely has me at home after 8:30 in the morning or before 8:30 at night and we are keenly looking forward to the July 1 when we get on an airplane and take our chaos elsewhere. At some point we entertained the idea that Renee and Parker should come back for a check-up in Paris mid summer but we both decided that would be counter productive and in the end, the US has good, though expensive, medicine should something go wrong.



While Parker was in the hospital Renee would hum two melodies, one from the movie Dumbo and one which she couldn't place and I was convinced was a hymn and the girls were convinced was from the baby Einstein series. We somewhat forgot about it until last Sunday at church when the opening hymn reminded us. I was able to sing the first line which translated from French says "Do you remember my child?" and then Renee and I both lowered our heads to look at the ground as we let tears roll from our eyes in that sheepish way you do when you don't want anyone to see. Memories of sitting in Necker flooded our minds and we remembered. We read the words of the song as the rest of the congregation sang along and our girls looked at us in stunned silence except for Axelle who insisted "don't cry momma" over and over. It turns out that the girls were right as well. The hymn, which does not exist in the English hymnal, is based on Largo from Dvorak's 9th symphony.



Sunday was also the day that our friends, the Arnold's, blessed their little boy Maxwell (a church tradition for all children in the first couple of months after birth). As I stood in the circle I was surrounded by so many of the same men who surrounded us 11 months ago when we blessed Parker and Penelope. Many of these same men have time to time blessed PJ through and whose wives have provided physical and emotional blessings through service rendered to our family over the past four months. I realized that for many of us this would be one of the last Sundays we would meet together in Paris. Chris and Brittany Gamble who lived very close to Necker and who would drop off food for Renee and I before taking meals over to our house for the rest of the family. Chris is finishing up two years here and will now be stationed with the US Air Force in Boston. Curt and Janet Stone who was gave Parker his first inspired blessing when we didn't know what we were dealing with. They will be retiring after this post and returning to Vancouver, Washington to look after their own grandkids. Rob and Staci Waller whose two girls Ellie and Xandie are at the same school as our girls. Staci was always willing to pick our girls up and drop them off or take them for lunch. Rob was finishing up after President Obama's visit to France and they are moving back to Iowa to await their next Embassy post. Mike and Amy Herrick whose daughter, Rachel, is a month older than the twins. Amy in addition to being Abby and Hannah's piano teacher also brought the first meal to our house the Sunday we went to the hospital. She also took Renee's off the cuff idea of getting I love PJ shirts as a quest and after finding no satisfactory solution in Paris had them made up in the US and shipped over. Mike is transferring back to KPMG in Southern California in August. After 9 summers in Paris we are used to this outflow of people as we anticipate new friends arriving in the fall. This year feels different, special, difficult. For us, these people needed to be here, in this place, at this time, bound together by a set of principles which they not only believed in but actively lived; faith, hope, charity, love, compassion. Miles separate us from family and past friends, miles will now separate these friends from us for a time, maybe for the rest of our lives. Though we will miss their physical presence in our lives and their caring, comprehending glances at church will never be replaced, the memories and the gratitude we feel for the time they spent taking care of us in our time of need will be cherished and not forgotten.