Hear & Now

Parker is still progressing and has been having new experiences.



On Wednesday we returned to Necker and Dr. Lacourreye (the ENT who first tested PJ and determined he was deaf) and Anne Keroudin (the audiologist who gives us lots of ear equipment) turned Parker's cochlear implant on. They first ran a series of tests on the implant and determined all 22 electrodes were functioning. They then did tests on a few of the electrodes sending sound impulses to the auditory nerve and then waiting for a return. They told us that it could be at this stage he would not react or there could be no response and the first couple of tests were not encouraging. On the third one they got a signal back and he turned his head and smiled a bit. This was repeated on another test so there was some recognition of sound. He did not respond to any clapping sounds or vocal calls and Renee and I were underwhelmed with the overall process and overwhelmed with the amount of equipment and care instructions that we had to deal with.



They instructed us that he should wear the cochlear implant on the right ear and the hearing aid on the left ear at all times. The implant side has the piece that goes over his ear which has a microphone and a microprocessor. This is linked by a wire to a silver dollar-sized node which is magnetically attached through the skin to the implant that was installed two weeks ago. The earpiece would typically also have the battery pack attached to it but given Parker's age the battery is clipped on to his shirt and there is another wire linking this to the earpiece. At the end of the earpiece there is a red light which flashes slowly when their is a problem and flickers rapidly when it is processing signals. It is a significant amount of head gear and for a small child who is just re-learning how to keep his head up, it is falling off constantly.



Thursday was the first trip to the speech therapist (Valerie) post cochlear implant activation and Renee had a minor emotional breakdown when she asked how it was going. After so much effort, the surgeries, the time, Renee's mom and Aunt Barb coming to help us, the complicated new equipment, I think we were looking for a bit more immediately miraculous result. As with all things we were reminded that faith precedes the miracle.



There are four levels of intensity on the implant and every two days we are supposed to boost the intensity level. Friday we moved it to level 2. At dinner Parker was holding his head up well in his chair while Renee spoon fed him. I called to him from the side and he turned his head fully to look at me and smiled. Renee called back to him and he would turn back to her. This we repeated several times and it was the first time in three months that we had a clear feeling that Parker was hearing us again. It isn't much and we are not sure if he can really pick up where sound is coming from but Renee and I were thrilled and Parker seemed to be happier as well.



We are headed into a three-day weekend with a forecast of sunny skies in Paris. Monday we come into the first month of summer. After a brutal winter the spring brings a level of re-birth through a series of struggles, sunshine and warmth somedays chased by clouds and rain other days- always with a risk of a late frost or a cold period where growth may be slowed or stopped. Then the summer comes and though not every day is perfect, you certainly feel a sense of security that shoots that struggled for life will start real and impressive growth. You have a kind of absolute faith that there won't be a freak snowstorm that will kill off the summer foliage. Our faith in this summer is slowly growing in many ways.

It's All About Love

Early on in Parker's illness it was clear to me that all of this, and all of life is about LOVE.

The LOVE that a mother or father has for their sick child, fighting for life in a sterile room surrounded by technology & tubes & cords. With nothing to do but watch, and hope and pray and love....

The LOVING touch of a skilled nurse who lifts my son's head ever-so-gently to massage it, in spite of his intracranial hypertension-to prevent bedsores. 

The strangely LOVING eyes of the ICU doctors who looked at me, at John, at Parker, over masked faces with a sense of "knowing" some degree of pain & fear & hope & wonder I had on my tear-stained, mask-covered face, in my worried eyes.

The LOVE a husband and wife have for each other to create & nurture a child together, then 2, then 3...then 5 into a world full of hope and beauty muddled with heartache & confusion. I see that love ebb & flow with life..and know it is constant & he is constant. He has always been, always will be, right by my side. He seems strong. I seem weak. We grow,unify, accept. This is perfect love...

The LOVE a sister has for her baby brother: A sister who prays every night that "Parker will hear...and that his head could be fixed again."

The LOVE of another sister who is old enough to ask, "WHY? Why did this happen to us? Why did this happen to him? Why did this happen to my brother? Why, Mom?..."

I see LOVE in a mirrored reflection from another sister--not a twin--who says, "I like Parker. Where is Parker? He smiles at me..." I answer, "Parker is ok. (while simultaneously reassuring myself)Parker is at the hospital again-with Dad."

I see moments of true kinship, an intrinsic LOVE, when I place the twins in the same bed at night and watch the way they look into each other's eyes, pat each other's faces with an understanding. An understanding of all of this that seems much greater and less pained than mine... I see Penelope's eyes light up when she sees that Parker can sit by her, or stand next to her (with  my help)...and realize that he is not forgotten...by her.

LOVE is when my friend calls me and says, "Listen. I know that if this were a normal day in a normal world, we'd be taking our kids on a picnic today. So, what do you say?"...My knee-jerk reaction is of course, "No"...but the sun is shining and though all doesn't actually appear to be well....I think, deep down inside of me, it may in fact be. And I do. I do take my kids on a picnic with her. We hold our children. And love them. And watch them run & jump & play....and time almost starts to run the way it used to....before February 22nd. Almost.

The LOVE  a mother has for her grown child...when she sees me weeping & suffering she says to me, "You have no idea how much I love you Renee, my child. No idea." I stop weeping, take a breath and say, "But I do, mom. I do."

I see LOVE from my son's shining, glimmering eyes and smiling, happy face. It reminds me again that it is all about love. That's it. It's it.

This whole thing is about love. The love of a neighbor for a friend, my childrens' friends for them, a parent's love for her child, an aunt's love for her niece & nephew. The friend who knows something very real of suffering...and offers to suffer with you if it will make your suffering that much more tolerable. 

I believe this life is a test. I believe in a loving Heavenly Father and Mother who placed us here, all of humanity, as brothers and sisters--to be tried & tested, to learn & grow. Each day we must. Difficult things happen to refine us and give us opportunities to serve others & find joy in doing so. We have been blessed by so much love-inside our home-and outside. The only way we could possibly return this love is to embrace this challenge the best way we know how, and continue to love. 

LOVE Parker. LOVE each other. LOVE our friends. LOVE our enemies. Seek to LOVE more fully and more completely and more sincerely. 

Our dear friend got each member of our family shirts that say, "I Love PJ". His says, "Glad to be home". We are glad he is home. We love the idea that he is home, with no plans for future surgeries. We love Peej. We love PJ. Love is home. Love is everything.

Home again, home again

Parker is back home and is recovering well.



His first night post-op PJ woke up or was woken up several times. At a little before midnight the night nurse, Franck, came in to give him a breathing treatment and also re-did the bandage covering the iv in his right hand. I got a good look at the iv catheter which was not inserted into the back of the hand as I had supposed, but down the length of his thumb. Franck said that the iv was precious and Parker was trying to pull it off. At Franck's suggestion we put a sock on his left hand and wrapped it with surgical tape so that he spent the next day with two paws.

As promised, they took off the head bandage off in the morning. The scar is not big and is right behind the ear so will not be as noticeable. They left a little gauze on the wound and also wrapped his head in a hairnet that tied up on top leaving him looking more like a teletubbie than a bear.



Later in the afternoon we decided to look for the magnet that they put under the skin that will ultimately attach the antenna part of the implant to his head. With little trouble using the clasp from my blackberry case we were able to find it. The speech therapist warned us that sometimes PJ might be walking too close to a metal cabinet and his head gear will fly off and attach to it. He also now has a card that allows him to explain why the airport alarms will always go off.



The head x-ray showed that the implant was placed well and there seems to be no imminent problems.



Last night he slept well, from 9 until 5 without waking up. He got his last dose of antibiotics in the morning, the intern saw him, signed the release papers and we were home by noon. Trousseau has a different feel from Necker, more laid back and welcoming, but a hospital is a hospital and we are glad to be home with no future plans to go back.



One of the first days after we found out PJ was deaf Necker gave us a paperback book for parents of deaf children. Renee hid the book for the longest time; even when it was out it was face down. She finally picked it up and read it this last week.



Even if the cochlear implant is successful and PJ is able to hear and speak, we are still planning to learn some basic sign language in case there is a malfunction or in cases where he can't use the cochlear implant. Six weeks ago the 14 to 17 year-old youth in our regional church organization had a service project where they videoed themselves performing around 50 different signs (ASL-American Sign Language for those keeping track--not LSF which is the french sign language "Langue des Signes Francaise"). They gave us the video last Sunday and today we all watched it several times and practiced the signs we could remember. Even Axelle was engaged and can identify and sign "monkey","baby" and "ice cream".



We also introduced the girls to Ozzie, the koala bear, and his implants. They all wanted to try on the fake implant, velcroing it to their hair.



All in all we are still getting used to the idea, trying to take it lightly once in a while and making the changes we need to make the best way we know how. Each day we see more and more of the hidden world of suffering around us and have a rising feeling of gratitude for the challenges that are not ours.

Cochlear video

Steps forward

Parker took his next steps today and we are looking forward now.



He was very congested during the days leading up to the surgery and we had the respiratory therapist work with him each day including Thursday morning before we checked into the hospital.



He was very active on Thursday, holding his head, arching his back and even doing some ab-crunches. The movements are still brusque and unsteady but slowly he seems to be gaining more control.



At Trousseau (the hospital), PJ smiled almost constantly and would laugh when tickled. There was a hospital strike so there were few people, either patients or staff so it was almost like a retreat.



He has a pull-out bed in his room and one parent is allowed to stay at the hospital overnight and I took first shift.



At 1AM the nurse came in to wake us to give him his medicine and his last bottle. At 6:30 she woke us again so that we could bathe Parker and get him ready for the operation.



Around 7:30 they gave him a suppository sedative and Renee held him until he fell asleep. At 8 they took him to the operating bloc.



We were still unclear how long we would be waiting; if they did one side it would be 3-4 hours, both sides would be roughly double. With prep time and the rest they told us minimum 5 hours before we would see him again.



We were sufficiently tired that we both slept for a couple of hours in the morning in PJ's room. They finally called us just after 1PM and told us that one of us could go to the recovery room.



Parker was the only patient in the recovery room when I arrived. He was very much still asleep and the two nurses were trying to draw blood from him for tests and were struggling to do so. He had the familiar head-bandage on but I noted that it was a bit larger on the right side, as if they had wrapped a golf ball to his head. His face looked puffy and his hands and feet showed evidence of a struggle to get an iv in.



The anesthesiologist came a few minutes later and indicated that everything went well on her end but given the level of congestion that remained she almost recommended postponing the surgery. She also reiterated that he was very hard to get a line into.



Because of the congestion his blood-oxygenation levels were desaturating rapidly when they would take off the oxygen and that this might require him to stay up to 24 hours in the recovery room. As other children started arriving I started praying that he would be able to leave. At one point when the nurses were trying to draw blood from PJ again, a boy who was about ten in the bed behind us, vomited into the air, some of it landing on the nurse.



Dr. Couloigner came into the recovery room for a brief visit and was very positive about the outcome. The ossification was not severe and they were able to work around it and he indicated that they did a test of the equipment and all seemed to respond as anticipated. They will leave it turned off until the scarring heals and we have an appointment to activate it on May 27.



After about 2 hours in the recovery room his oxygenation level had stabilized and I went to give Renee the update. When I returned there were five people in blue standing around Parker's bed but they quickly reassured me saying they were trying one last time to get a blood draw. After about 15 more minutes of me waiting in the hall, they told me they had succeded and that he was very brave during the process. Soon after, they released him to his room. Renee counted the places he looked like he got poked and stopped at 30.



The doctors are currently saying he will get his head bandage off tomorrow and he should be released on Sunday.



He is a tired little guy right now and we are letting him rest as much as possible. Post-op he has moved all his arms and legs, arched his back in defiance several times, finished off a two small bottles of milk and flashed us a couple of coy smiles-- I don't think we can ask much more from him today.



Renee's mom is here again and Abby came home from her school trip. Our dear friends and family have once again rallied around us and have allowed us to feel lifted up and sustained-physically & emotionally.



After Renee left to pick Abby up from her trip, an older man dressed in medical garb came by with a rather large box filled with all of the external equipment that goes with the internal hardware that PJ had surgically attached this morning. He walked me through all of the different contents of the box, the magnets, microprocessor, batteries, infant adaptation package, sport module, external microphone for his teachers, external listening device for his parents. He told me that it was important to send in the warranty card as soon as they turned it on, where I could go to get insurance, how we needed to de-humidify the material every other day, how to charge the batteries, etc. He then stacked everything back in the box as neatly as it was before and left me there pondering for a few seconds before he came back in and presented me with a large-ish Koala stuffed animal complete with its own imitation cochlear implant that velcros behind its' left ear; compliments of the Cochlear corporation in Australia.



On the box and the yellow and white shirt worn by Parker's new friend from down under is the company's tag-line "Hear now. And always".



This is one of those days that we hoped wouldn't come. Not just to spare PJ the pain of an operation but also because from this point there is no turning back for at least one of his ears.



As with so many things, it is better now that we have taken the step than it was when we were consumed with the questions of whether or not to do it. Although daunting as the whole day has been, and the reality of adding new tasks to future days to work with all the new equipment will require adaptation, it is somehow refreshing to see that the dreaded monster in the closet, is now out, is less dreadful than we thought and we can actually deal with it.



PJ is sleeping now, he looks like a little warrior wearing only his diaper but with little bruises and pin holes all over his skin, bandages on his head, hands and feet. He is surrounded by his guardian animals that have made so much of the journey with him. Some; Mehdi-bunny, little-frog pacifier holder, gigi the giraffe, he holds tightly in his arms, near his face. The newest furry mate sits at the bottom of the bed where PJ gives him a few furtive glances when he wakes up. I don't think Parker has become sufficiently accustomed to him yet to embrace him (or even name him)-- but the Koala is starting to grow on us.

Choose the right

Parker continued his battery of medical visits this week and we are progressing towards the next surgery with a sense of unsettled inevitability.



On Monday we had our first visit to Trousseau, the hospital where the cochlear implant operation will take place. It has a different feel than Necker and seems slightly more updated. While the ENT area (surgical, consultations and patient rooms) are contained in one building, there is a significant amount of green space in the hospital complex and there is a children's play area and a well-maintained flower garden. It helped that Monday was very sunny and warm but the overall feel of the place was a little less ominous.



While at Trousseau we met with Dr. Loundon, the ENT chief there, as well as the anesthesiologist. She indicated that it was still not determined whether or not they would do one or two implants and if one which side it would be on. According to her with one implant there is a 95% chance of success "hearing", with two there is a 98% chance. We had understood that the preferred single-implant side would be the left, but Dr Loundon indicated that even though the Neurosurgeons had placed the shunt valve farther to the back of the skull than was typical, there would remain a risk of infection from the shunt that unless there was a major difference between the two sides, she would prefer implanting on the right given the reduced cranial real estate on the left. 

Thursday Parker was scheduled to visit with the occupational therapist in the morning and the speech therapist in the afternoon.  There was some confusion and Renee and Parker ended up missing the occupational therapist and in the process Renee lost her cell phone with all of the different doctors phone numbers with it.  The people who found it decided to keep it so she has been somewhat unreachable for the last several days.

Several doctors have expressed a keen interest in Parker meeting with the occupational therapist more than the physical therapist.  Prior to this it would have been difficult for me to understand what the difference is but as we understand now the physical therapist would normally ensure that the physical aspects are functioning; legs move, head held up, etc. The occupational therapist works to make sure that the brain is connecting to the body and he is picking up skills; crawling, using a spoon, playing with a ball, etc.  Interestingly, the French social security system covers physical therapy but not occupational therapy (which is covered by my work insurance). We have a hard time working with him consistently to help him regain his strength as we don't know when we are pushing him too hard so tend to back off as soon as he starts to whimper.  With the hearing aids as well he seems to find no joy in wearing them and putting them in seems to bother him as well.   It does not help that we see very little improvement when he wears them so our motivation is limited.

We are firmly entrenched in our cycle of good days and bad days-- this week was difficult for Renee for many reasons.  

Abby has been absent for the last few days as she is on a class trip to the Dordogne and her presence has been missed.  She is a very energetic child who tends to bring a level of excitement to every situation.  This is not always in a positive way but the energy she brings tends to dissipate the melancholy of the would-be quiet moments.  We have missed that energy and its strength.

Parker started vomiting yesterday after a hearty lunch and we became instantly concerned that there was something more serious involved.  We have had significant experience with sick kids but with PJ we wonder if there is something wrong with his shunt or something else we haven't had to deal with yet.  I don't think we will ever quite get back to a point where a cold will just be a cold with him.

The week before us seems to be lurking in ominous shadows.  We keep hoping that his hearing will spontaneously come back or we will get some definite sign that he is progressing, fearing that once we get to the actual implant surgery it isn't going to work or there will be complications.  Renee is hoping for that additional miracle and has a strong amount of faith that he can still be healed. 

I debate whether or not the whole concept of cochlear implants is the miracle in itself and we should be grateful for modern medicine, and then vacillate into wondering if this is my way of apologizing for my own lack of faith not being able to spare my son this surgery and its attendant permanent hardware attached to his skull.  

In any case we will be happy to be past this week.  It feels much too much like the waiting place and we have places to go.

May flowers

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.