Parker update March 5

Parker had change today-- change is good.

We spent the morning perfecting his skill at the game of put the pacifier in mouth with his own hand. He has also seemed to learn that if he opens his mouth longingly, tears up and makes a small whimper, a hand other than his own will, eventually, also put the pacifier back in his mouth.

He seems to be working through the medication withdrawals and there were no shakes and shivers. They have had a couple of problems finding another vein after his catheter got infected and today they decided to stop trying and just pass medicine orally. He now has one less tube going into him and tying him to his bed.

He got a chance to retry eating on his own. Dr Oualha said he could try 5 ccs of milk in a bottle just to make sure he could differentiate which path it should go down. After getting used to the nipple a bit, he finished it off with ease. Gaelle then told us that she was so sure he could do it she put 20ccs in the bottle.

This afternoon we had the physical/respiratory therapist, Emmanuelle, come in and work with him. We used to think respiratory therapy was difficult to witness on our children-- physical therapy is a notch up from there. For a good hour Emmanuelle was pushing him into a lot of very uncomfortable positions and basically asking him to recover on his own. She was very happy with his progress, especially with the upper body. He has got some work to do on the legs and holding his head up by his neck but we are seeing a more and more brain-directed motor activity.

They confirmed this morning that they would be transferring Parker from the ICU to the "constant surveillance unit" or USC.

11 days, 2 hours and 45 minutes after arriving in "red unit" by ambulance and being immediately surrounded by nearly a dozen very anxious medical personnel; two nurses and his parents joked as we walked him through the underground tunnels of Necker Hospital to his new care unit.

The USC is amazingly more calm than ICU. The rooms are white with televisions and the ceilings are higher. The doors are closed. There are very few beeps or alarms. The staff seem a bit more reserved and all in all it all seems a bit more sterile. It is not entirely clear to me what the USC is or what the American equivalent would be. It seems to be a sort of halfway house for children who are not entirely sick but not entirely ready for treatment. I feel like we are in Dr. Seuss' 'Waiting Place'.

It was bittersweet leaving the ICU-- times of crisis create bonds quickly and several people from red unit, and even farther down in blue unit came by to see Parker and transmit their excitement at how much he had improved.

Last night as Florence finished her shift and left for three days off we realized that she would not be our nurse again-- Renee could not restrain herself and ran down the hall and gave her a big hug. Florence said that she wanted to embrace us but said she felt uncomfortable in front of the night nurse-- in the end, she ran back in and gave me 'bisous', the traditional French cheek-kissing. Florence has worked in the ICU since 2002 except for two years she went to Benin in western Africa working with a humanitarian organization.

Dr. Oualha came to say goodbye as well and firmly shook our hands and complimented us for being constant and courageous through this time. He informed us that after naming Parker's bunny Mehdi, the staff are referring to him as 'Doctor Lapin'. We asked to take his picture and he insisted on holding Parker in his arms and gently kissed his forehead as we snapped the photo. He is in charge of the 6 beds in the red unit of the ICU and he has a 19 month old son.

Gaelle walked us over to the USC with her trainee Celine. Gaelle has always been extremely professional and calm even in crisis. She seems more than competent for her position and many times we could see her politely questioning the interns on some of the things they were suggesting in the tone that was clear she respected the chain of authority but also clear that she recommended they re-consider their proposed action. Gaelle has worked in red unit for the past four years and has a 9&1/2 month-old son named Mathis.

I am awed by the human capacity for love and equally awed by our incapacity to portray and communicate that love except iin times of crisis. Through these past days we have felt so encircled by that feeling.

Some of that has come from people we have never met and may never meet but are the kind of people who have the capacity to feel and express compassion without the need for having a personal acquaintance.

A lot of that love has come from friends who were so very close at a certain time and in a certain place, but as we have moved on or they have moved we have lost meaningful contact and relegate ourselves to sending a Christmas card or adding them as a Facebookfriend. Then, through a challenge like this our heart's memory reminds us how much we really loved them, and how much we really still do.

Much of that circle comes from a large extended family, which has always had its own struggles to function as a unit and whose individual members might also pose individual challenges. Somehow they rise above to the occasion and heal some of their own wounds along the way. Some were diligent about organizing family fasts or getting our little Parker's name on the prayer roll on their cousins church in Michigan or Mexico. Some were filled with faith and hope and offered any support material, physical or spiritual that they could-- sometimes this included family members who were willing to share with us that they too had a very personal and private relationship with God; often recently rekindled. Some could not bring themselves to speak on the phone to us but through the soft sobs at the other end of the line 5000 miles away you knew that they knew, and felt.

The immediate and physical love expressed by friends from our neighborhood and from our church was critical, life-sustaining and evident. The meals prepared, play dates arranged, babysitting, house cleaning, laundry and visits to the hospital to drop off lunch or dinner or cards or pictures or clothes has been overwhelming. Rachael with Leslie has been madly organizing this amongst their own lives and has provided a constant to our girls as a tangible link to family for our girls on a daily basis. For those who didn't know, Rachael is Renee's younger sister and lived with us for almost 2 years and was one of the only people that we told we were having twins -- but she already sensed that there were two. I have seen her grow up since the age of 11 and seen her go through life's challenges but she has the most amazing capacity to love. Sometimes she would express that through a firm hand at the dinner table with the girls who had become a little to custom to a diet of chicken nuggets with ketchup and were asked to try something new. At other times it was through the physical gesture of a earnest hug which transmitted a feeling of anxiety for what might happen at the same time as a sense of empathy that whatever did happen she would feel almost as deeply as we did.

Ultimately we were also encircled by the love of God, our Father in Heaven, expressed by the atonement of His son Jesus Christ and carried to our hearts by the Holy Spirit. We have come to understand more things that we always knew, believe things that we always thought, and feel things that we hadn't thought possible to feel. On the second day in the ICU Renee asked me if Parker was spared would I be willing to shout from the rooftops that it was only through God's grace. As I sit here, in the sterile white waiting place with the golden dome of Les Invalides in the window and look at my son cuddled up in his blue flannel blanket with Mehdi-bunny at his side while he restfully sucks on his pacifier-- I know, in every way, that it is only because of God.