"Courage--On est avec vous"

I had this big reinforced realization this morning that though we have spent the past 2 months in some very real, very scary places, scenarios, eventualities, etc., WE HAVE NOT BEEN ALONE.

Early in this story we received some flowers and a note from a family in our Stake.  It read simply, "Courage... on est avec vous"; in English this reads "Have courage... we are with you."

I was, at the time, touched that people we don't know all that well would take the time to do such a thing-- but it's words have driven straight to my heart several times in the past 9 weeks.

We have realized that we have not been alone. We have taken courage and strength from this. Time and time and time again...

Our Stake (Our regional church congregation for those unfamiliar with this terminology-which includes Paris, Versailles, and other cities surrounding Paris) had a 72 hour rolling fast February 23, 24, 25.  We even heard about several people who fasted 48 hours, or more... people in our ward, our stake-our family away from home. 

We have heard several stories about small children who have learned to pray and have FAITH and feel GOD's love for Parker, in behalf of him, for us and discover for themselves that God hears & answers prayers.

In sheer Earthly numbers -- we have not been alone-- Parker's sisters, grandparents, aunts, uncles, cousins, church leaders, dear dear friends on this continent and others. People we know & people we don't know have prayed for us, thought for us, hoped for us, lit candles for us.

Abby's friends' moms & Hannah's friends' moms & Axelle's friends' moms have taken turns for the past several weeks welcoming the girls into their homes for lunches & shuttled them to & from school on some sunny but often many rainy days...if these women were not my friends before this, they certainly have become my friends since. Our hearts are knit as one-as one mother's hope & courage melts into another's...

A myriad of doctors in emergency, ICU, neurology, neuro-surgery, step-down continued care, our pediatrician Dr Robin, Dominique his nurse, the "MRI/Scan-Man" whom I often see outside his post on our many trips to Necker or our days from the inside longingly looking to break free from Necker's confining walls has walked down this path with us...and the secretaries for the various units have helped to bridge that path between hanging cliffs for us, more than once.

We've seen other families who have passed in & out of hospital care and whose stories have touched our lives & given us perspective, hope & more compassion. We have seen children with permanent, severe handicaps in Garches... Had doctors and nurses in Garches who wonder of our news each day. I once saw those children, and saw nothing but handicap, and felt sadness & heartache & wonder. Now I see around their handicaps, whatever they may be-- & see beauty & perfection & wonder.

10 Neuro surgeons

3 USC doctors

5 ICU doctors

30 nurses & aides from various teams who have intimately cared for us

30 school friends

50 church friends

The ear team

The pharamcists...and on & on.

Church members in Malaga who said they would continue to pray for us after John & I both poured out our souls at the pulpit in Spain.

NO. We have not been alone.

30-40-50 friends, work affiliates, here and there and seemingly everywhere seem to multiply by 2, then 5, then 10, or 20 or 50.

The gardienne of our building, her mother who speaks nothing but portuguese...we communicate to each other in passing by holding our hands together, making a shape of a cup...then pointing to the heavens with tears in our eyes. To her, I say, in loud french, thinking that somehow this will allow her to understand what it is I want to say, "MERCI POUR VOS PRIERES." We both smile, nod our heads & look up. "Thank you for your prayers" is all I need to say. She understands. We understand. He understands.

Pointing to the heavens, I have seen angels. I have seen concourses of angels in those very first few difficult days who hoped and rallied and sat and waited with us... I saw them holding my son, my baby. I felt peace in knowing that someone,  some people, could hold him, and love him & sing to him when I could not. Many of these people I knew, and recognized, others I did not. Every single night we were asked to leave the hospital during Parker's hospitalizations, I thought of those heavenly beings & prayed that they would have ,mercy again on me & take my son to a safe, warm place, in cupped hands & keep him well until I was allowed to return. I felt the heavens reverb with solemn and fervent prayers from earth up to the heavens.

No. We have not been alone. EVERYWHERE I TURN I FEEL STRENGTH & LOVE & COURAGE EMANATING FROM OTHERS. We thank you & continue to thank you...and yes-we take courage in that. Great, great courage. We feel you with us, walking down this scary path, and climbing these mountains behind mountains. You carry us when we cannot carry ourselves & you give us resolve to be stronger & wiser & better. We take much courage in and through and because of..you. 

On the Mend

Parker has been doing well since his surgery.

On Thursday, the day after the surgery, they moved him from the step-down unit to the general neuro-surgery ward.

He is very responsive and smiles much more frequently. Slowly we are seeing parts of the old Parker shining through and it does our heart good.

The interns came by early in the afternoon on Thursday and said they were very happy with the results of the surgery and the CT scan (that they had done that morning) showed everything in its right place and that the shunt was working properly and the liquid was draining from the ventricles. Importantly, the subdural liquid was not increasing which was one of the main concerns we had with the surgery.

Later that day Dr. Puget came by and apologized for not having been able to come by previously. She was uncharacteristically positive as well. She indicated the previous evening's vomiting was not surprising to her given the changes in the pressure in the brain. She did respond to one of our questions saying that this shunt was permanent but said from her perspective that Parker should have no counter-indications from pursuing a completely normal life. We inquired about traveling to the US this summer and she said absolutely no problem for her-- they have neuro-surgeons there in case something went wrong but for her there would be little reason to worry.

In the initial scans and MRIs there was evidence of multiple small lesions on the brain and we asked whether the more recent diagnostics had shown how these were progressing. Dr. Puget said that she was not seeing anything like this anymore. For her she thought there was a possibility of some speech and developmental delays but not anything that wouldn't resolve itself. This was very good news for us as we have somewhat been dreading the what elses there might be. We are still cautious but we are looking forward to meeting with the Neurologist next week to hopefully confirm this assessment.

She said she would like to keep him in the hospital until Monday just to see how the scar heals but for the first time ever at Necker, someone gave us more than 24 hours notice of when we would be leaving. Renee had mentioned earlier in the conversation that it was very reassuring to see so many neuro-surgeons smiling. As Dr Puget left the room she stopped and came back and told Renee that there were two very different paths that Parker could have taken, they were all very happy he didn't take that other path.

Our next step is dealing with the deafness. Between now and the 15th of May when he is scheduled for the cochlear implants Parker has 8 different appointments with a variety of different specialists related to his hearing. Renee dropped the MRI off to Dr Couloigner and got a chance to speak with him briefly. Allegedly there is still a significant debate concerning whether to do one implant or two and we are waiting to see what the result of that debate is. On Monday his hearing aids should be ready so we can see if that provides any improvement in the interim.

Friday Parker was again in good form and the interns were hopeful they could convince Dr. Puget to allow an earlier release, but given there is currently ample bed space in Neurosurgery, Dr. Puget said today she preferred to have him stay until Monday morning as originally planned.

The girls visited him on Friday evening and he was beaming-- as were they. Hannah just wanted to hold him, Axelle even spontaneously announced that she liked Parker. It was Parker and Penelope's 10 month birthday on Friday-- this was the first time that we had brought Penelope to see Parker in the hospital. They still look nothing alike but the both have two new teeth.

Saturday was a typical slow Saturday in the hospital. Outside of the visit by Dr. Puget in the morning very little in terms of medical care was done. This morning his head bandage came off and we had hoped that they would leave it off as in the previous surgeries they did not require the full helmet after the second day. Today they decided to replace it which was bothersome to both Parker and his parents. I left in the early afternoon for about two hours while he was sleeping and upon my return the nurses were putting another head bandage on as he had awoken very upset and somehow managed to pull off the bandage. This time they used glue to fix it better. He certainly seems to have regained some strength in both his arms and legs. In addition to getting his head bandage off he is kicking quite vigorously with both feet. One of the reasons I felt compelled to go home in the afternoon was that he had successfully kicked a good portion of his lunch onto my shirt. It is encouraging to see physical activity from him -- it will be good to have him out of the hospital where he can develop this a bit more.

We are feeling a strong sense of God's love for us. This has been manifest both directly, through a simple reassurance that he is there watching over us coupled with a feeling of joy that has accompanied Parker's recent progress, and indirectly through so many people continuing to want to help us. I brought our four girls back to Paris from Spain yesterday. For the previous five days they had been staying with their Aunt Katy near Malaga as we decided that for the girls and for us it would be better if we could just fully focus on Parker. We also thought it easier for Katy and more enjoyable for the girls as there were built-in activities at the place we were staying in Spain. So Katy left her 13, 10, 8 and 5-year-old boys in Utah with my brother, Michael, and flew to Spain to take watch of our four little girls by herself. When I called her yesterday to let her know we made it back to Paris and thank her for coming she thanked me for letting her feel like she was helping out. I have known Katy for 16 years and adding the traditional "in-law" to "Sister" seems at best inappropriate.

It still amazes me that there are people like this, people who are willing to rearrange the hectic schedules of their own lives to unselfishly lend a hand and then express gratitude for having been able to do so. While this has taken the form of some people swapping their frequent flyer miles for a trip to watch our girls, sometimes it has been expressed by someone who wakes up at 2AM to call us in our time zone with a particular impression or feeling which has enabled us to have a sense of hope for a brighter day. I am not sure that I am that kind of person. I don't think I am necessarily unkind or particularly uncharitable but for whatever reason in the past few years I don't know that I have done an adequate job in rendering service to my fellow man-- to try and lessen someone else's load without having an ulterior motive or being compelled by guilt. Oddly, I remember the feeling of joy in service, freely giving of time and talents and not really thinking whether or not you were rewarded or even appreciated. Somehow, as time became an increasingly precious commodity, it seems that I had begun to jealously hoard this for myself and squander this on less meaningful pursuits which provided amusement, but not true happiness. Gratefully, there are so many others who prioritize service above other pursuits. As such, we have greatly benefited from these services and continue to do so. 

Two months later, back at Necker

Parker had his ventricular shunt surgery today and is now resting.

We checked him in yesterday at 3 PM and except for the blood draw and the chance to take his vitals, there was very little else that we did that required a stay at the hospital. The anesthetist did check him and noted a slight stuffiness in his sinuses but said that unless this developed into his lungs the surgery would go forward.

Dr Puget also came by and spoke with us briefly about the procedure. She indicated that the fluid in the ventricles had been increasing significantly and the hydrocephalus would likely increase without the shunt. She did indicate that the subdural liquid was very minimal but cautioned that part of the reason for this might be the ventricle pressure forcing the liquid from the subdural. Once this pressure is released they will continue to monitor the subdura to see if this starts producing liquid again and, possibly, replace the subdural shunt.

Dr. Puget did indicate that the new shunt would not necessarily preclude bilateral cochlear implants and had discussed with Dr. Couloigner concerning this.

Despite all of his internal issues, Parker was happy and playful most of the day and continued to blow his lips as if he were playing the trombone. Sometimes when we would smile at him, he would coyly turn his head away with his own grin -- this was something he used to do quite a bit and we were encouraged that he was remembering some of his old habits. He still does not want to sit up and his head wobbles around when we put him upright, he does not immediately cry though.

We came back to the hospital this morning just before 5AM as this was the last chance he would have to eat before the surgery which was scheduled for 11:30 AM. We all slept most of the morning and they finally came to take him to the operating bloc at 1:30 PM. Two hours later he was in the recovery room still sleeping and with a mask on for a breathing treatment. They indicated that this was only because of his congestion and that the surgery went well. The anesthesiologist also spoke to us in the recovery room and said that there was a significant amount of pressure in the cranium and it was good that they placed the shunt when they did. He also told us Dr. Couloigner came at the end of the procedure and implanted tubes into the ears to drain them in preparation for the cochlear implant surgery-- that saves us one surgery and another trip to the recovery room..

He was significantly more drowsy this time in the recovery room. The previous times he was shaking his head, flailing his arms and crying rather constantly, this time he remained almost asleep for most of the two hours we spent in the recovery room. He also needed to have the oxygen on him more often as when he would doze off his oxygenation level would drop down. The nurses were not overly concerned and subscribe this to the congestion.

He does not move his head at all, likely due to the pain and the restrictive head bandage. He was not moving his arms much either but part of this was due to the left one being bandaged to keep his iv in and the right one having a blood pressure monitor attached to it. He eventually started raising his legs in the air and pawing at them with his encumbered hands.

In his room he wakes up in occasional fits of pain and discomfort but he has continued to perform his lip-blowing trick and has even managed to smile once or twice. He is frustrated by all the bandages and wires and that his currently dominant left hand cannot grasp his pacifier. Mostly he just continues to rest although around 9:30PM he started vomiting which is a common side effect of the anesthesia.

Today marks two months to the day since we first checked into Necker. From our room in neurosurgery we have a view of ICU and can see the windows of room number 2, the waiting room and the bad news room. Yet even those memories start to fade as we see the state he is in now and imagine where he was then.

This surgery was particularly difficult for us to sign up for as we could not see any clinical signs of the problem. There were no seizures or tubes sticking out and we kept hoping he would just get better. On Monday when they did the CT scan, even to us it was clear that the problem had not gone away-- yet we hoped that we would not have to put this more permanent shunt in, always living in that shadow of fear that it could get infected, or blocked, or somehow make it's way into the intestinal tract again.

It is also hard to take an innocent and unknowing child to that process. Friday will mark ten months since his birth so even if he was capable of verbal communication there is no obvious way to explain it to him. Our choice was either to be dour and anxious, and somehow transmit a level of concern to him or just take advantage of the time we had with him to do a little home physical therapy and play with him. We chose the latter but there is a sharp and deep sense of guilt when you go from one moment making "kissy-faces" with your baby to the next handing him over to a relative stranger to be carried of into the operating room as you pray he does not feel that sense of betrayal that you feel. Today, in an act which I considered humanity, the tech who took him into the operating bloc did not put him in a gurney but cradled him his arms.

I have stopped asking why each new step occurs and just ask questions to make sure that it is an appropriate course of action and then pursue. Renee is getting to that point as well. We still have our hopes; we hope (beyond reason) that maybe the ventricle fluid was somehow pushing on the auditory nerve and he will hear naturally again before he has to have the cochlear implants, we hope that the subdural fluid will not come back, that the brain lesions that were on the first scans will not be on the subsequent ones, that he will somehow get back into a normal development cycle-- and then we hope that we can continue to press forward even if our other hopes are dashed.

We have also stopped constantly searching for a reason for all of this. At first we thought there was something that we would have to learn and prayed that God would let us know what that was so we could learn it and move on. We then thought maybe it was something that PJ was supposed to learn or do that required him to have this experience, or maybe it was for his older sisters or his twin sister. Maybe it was for a friend, or a friend of a friend, someone we didn't know personally but somehow they needed to see a process such as this one. We were obsessed with finding what the one lesson was before; now we are looking at this as a series of lessons, not knowing for sure the length of the course or who else is in the class but feeling the only way to pass is to keep progressing.

Back to reality

Parker is back in Paris and has returned to his scheduled protocols of scans and doctors.

The break was good for him and he is smiling significantly more often and spontaneously. It was also good for the rest of us and the girls seemed to have benefited from some time with their parents.

He had a few milestones the week we spent in Spain, he had a low-grade fever for a couple of days which caused some anxious days but it seems that this was most likely related to him cutting his very first tooth.

He also is verbalizing a larger variety of sounds, blowing through his lips and repeating a couple of syllables.

Today he was on the bed for some time on his stomach and he lifted his head up more than 45 degrees and rolled to his back twice. It is not the first time he has done this, but it is the first time in 2 months.

In Spain we met up with the Carrells. Danny and Diane are friends we made when we lived in Arizona. They are living with their six children in Ireland for a few years and we had planned to meet up in Spain some 6 months ago. It was great to re-connect with them and surprisingly relaxing with the combined 11 children as they entertained each other (and us with their impromptu "Flamenco" dances and rehearsals...of the 11 children, 9 are girls with Jake & Parker the sole boys in each of the families). When we met the Carrells almost 14 years ago, Diane was working as a nurse to special needs children. She would practice needle sticks for iv's on her own feet so that she would be more proficient with the kids. On the first Sunday after Parker was admitted to the hospital, three of the older children, Kailey, Jake and Shelby had independently chosen to fast for Parker.

It was an adjustment coming back to Paris. We flew back very early this morning and went to Necker to have another CT Scan done (we have somewhat lost count but I think this is his 7th).

 We then went on to get his ears fitted for hearing aids. The sun was shining all day long so getting back into the grind of it was easier.

We left the four girls in Spain with their aunt Katy until Friday so we are here in Paris alone with Parker. We were initially scheduled to admit him today at 11 AM but they re-scheduled the surgery for Wednesday and he will now be admitted tomorrow at 3PM.

Tomorrow we take him back to the fray, back to Necker, back to procedures. There is a knot in my stomach as he looks up at me with his trusting crystal blues without the hint that he knows what is in store for him over the next few days. We know. The needles, the iv's, the pseudo-sterile environment, the heart-splitting recovery room, the head bandage, the new scars, the waiting to find out if there is an infection, the forced abandonment when visiting hours are over, not knowing when he can come home again until the next surgery. We have been through it all before, but it doesn't seem to be getting any easier. But tonight, he is ours and in this moment he is perfect and beautiful and happy. In that we rejoice and thank God and trust he will bring us back to this place soon.

Easter

We had a very Happy Easter with the whole family today.

After the Doctors gave us a green light to travel to Spain we had to make certain arrangements to make all of that happen.

The first issue was that Parker had another MRI scheduled for the 15th of April, right in the middle of the week we were supposed to be gone. We first tried to change the appointment but Dr. Couloigner was very particular about who he would allow to do the MRI and both of the hospitals he would allow (Robert Debre and the American Hospital) could not fit us in before late May.

We then moved to plan B, I would fly back with Parker in the morning, go to the MRI as scheduled, and then fly back that evening. I found some relatively inexpensive flights and was in the process of verifying schedules and feasibility but on Wednesday night we came to the conclusion that to force Parker to spend an entire day travelling was not going to be therapeutic for anyone.

At that point we questioned whether or not it really made sense to travel at all. We were feeling like the girls really needed us to just be with them for a while but we were feeling reckless for jeapardizing Parker's progress.

After some prayers for guidance, we decided to revert to plan A and try again to reschedule. This time we asked for help. As all of our five children were born at the American Hospital and our pediatrician Dr. Robin practices there as well, we thought this was our most promising avenue. Dr Robin has been very concerned through the entire process and has called us regularly. I am not sure how many pediatricians give their cell phone numbers and personal e-mail addresses to patients but he had given us these even before the meningitis struck.

I left a message with him Thursday morning just before lunch and he called back within 15 minutes and put me on the line with the nurse who assists with the MRI's. She asked what dates would work for us and called me back ten minutes later saying we could come the next day in the afternoon.

With the MRI taken care of, we had to determine what to do with the girls while PJ went to the hospital. Sarah is slated to go to her sister's wedding in Arizona that week, and the girls have no school which meant we would need someone pretty much full time. Katy, My older brother Michael's wife, had offered to come over on several different occasions and one of those was the night before we had the date for the surgery fixed. I called her on the way home from work and four hours later she had found a flight using miles. Katy has four boys but we have faith that she will adjust.

So here we are on this Easter Sunday, looking at a brilliant blue Mediterranean sky and feeling a sense of the renewal of the Atonement.

About mid-week we started having some inklings of defeatism. Everything seemed too hard again as we wondered if we should just give up on any plans and recluse ourselves to waiting out this next stage of the process in bunker mentality. This certainly seemed the easiest solution, or at worst the solution with the least effort required. As persistent as that thought was, I really felt that we needed a time of happiness together before we committed ourselves to the different surgeries over the next few months and pushed through to find a way to accomplish that. Despair is a very real concern- not that we are visited often by it but it can attack aggressively, in a period when you don't expect it, and if left unchecked can quickly spiral into darkness. Despair is the meningitis of spiritual and emotional well-being. We are starting to recognize its symptoms more readily and finding the force to combat it aggressively.

For the first time in eight weeks the entire family attended church together. There is a small English-speaking branch of our church near Malaga, made up principally of retired British nationals and tourists. It was the one Sunday a month where people are asked to go to the pulpit to share their own feelings, thoughts and testimonies about the gospel of Jesus Christ. As we were relatively secure in our anonymity in the congregation, Renee and I both felt compelled to express our feeling of gratitude for the power of God and the Eternal nature of the family and the atonement of the Savior.

The older girls are also showing a lot of spiritual growth. Abby and Hannah's prayers depart from the standard list of family members and focus on specifics; reduced liquid on the brain, that Parker can go on vacation, that he can feel better. Today, Hannah even took the pulpit and in a calm, clear, strong voice that belies her normally timid nature and simply stated "I am thankful for my family, in the name of Jesus Christ, Amen."

The girls are also very keen on the Easter season, and focused on the Savior. This morning we hid the traditional Easter baskets and though the girls were excited, Abby asked astutely, "what does the Easter Bunny have to do with Jesus?" On Friday Abby and I talked for a while about how the Friday before Easter is the day Jesus died on the cross, she completed the story of the tomb, and the resurrection. We talked about how Jesus kept his scars so that he would remember us and we would recognize him. We talked about all the scars that I have, that Parker has, and how one day they would all go away and we would be perfected.

New plans for Parker

Monday we celebrated Sarah's 20th birthday with a picnic at the Eiffel Tower. Today we spent the morning at Necker.

Our first meeting was with Dr. Couloigner (the ENT) who checked Parker's ears and informed us that there was liquid behind the eardrums and this could cause a problem for the implant surgery. As such, prior to the implants, they will be putting tubes in his ears.

We then talked to Dr Lacourreye (the ENT who does the ear tests) who suggested that we get Parker fitted with hearing aids as soon as possible. She anticipated our question as to why we would do this given that he is deaf, by explaining that it would be good to stimulate the auditory nerve, see if he does have any hearing capability at all, and help him get used to having something attached to his ears. He has an appointment on Thursday evening to get these.

We then went to neuro-surgery who took us down for a CT scan-- I have somewhat lost count of how many CT scans he has had but I think this is the 6th or 7th. The scan showed that the ventricles still have too much fluid in them and they will still need to do the shunt surgery. The amount of liquid has not increased, and the scan showed the sub-dural liquid pocket has actually diminished, so they do not think this is urgent but it needs to be done prior to the implant surgery. They also arranged with the ENT's to do the tubes at the same time as the shunt so he has one less time under general anesthesia. The surgery is scheduled for April 21st and we have to check him in to the hospital the morning of April 20th to do another scan.

It was a long morning for us, and tiring for PJ. We always hope that one day we will go to the doctors and they will say "looks good, we'll see you in six months for a check-up"-- that was not the outcome today.

We question the necessity of some of the procedures and prescriptions that they recommend to us. Parker has a special status in France because of his condition under which all medical expenses are 100% covered as long as a doctor signs a prescription for it. While this is great for us financially, it sort of feels like someone has called "open bar" on all aspects of medicine and we are trying to establish the line between things that might be helpful from those that are necessary.

On the positive side, all of the doctors seem very keen on the fact that we need a break and have facilitated us going on vacation. The neurosurgeons cleared Parker to go and even moved the surgery off by a few days so that we can have a complete week. Dr. Quijano (who is Spanish & often wants to quiz Renee on her So-Cal acquired Spanish linguistics skills) from Garches is providing us with names of hospitals in Spain and medical prescriptions in Spanish so that if we run into trouble we can get help.

Culturally this is still foreign to us. We feel like we are abusing a generous social system by accepting hearing aids that may end up being largely superfluous, guilty for the fact that we come off as needing to take a break and escape as opposed to being able to push through and get things done. In large measure this is more dealing with our own insecurities as in France this all seems to be 'normal' and is accepted as being perfectly reasonable.

Renee's Note: On a more spiritual note, every 6 months our church congregates either in person or via satellite at meeting houses throughout the world, or like us, we skip the church houses & cuddle up in front of our computer to listen to and watch spiritual messages from our church leaders. With snacks & coloring books for the kids and the live-internet-feed,  we noticed recurrent themes of suffering & adversity & endurance. I have been thinking constantly for the past 24 hours of a scripture that was stated at General Conference this past weekend. It is found in 2 Corinthians 12:8-10: "For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee:for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then I am strong." I feel so very weak, and yet am strengthened by our friends & family member's love that has so utterly & completely encircled us these past several weeks. Every day I am amazed by the teaching, loving hands that guide us through this process and the lives that touch ours throughout and along the way. I feel weak in body but strong in spirit. I prayed for 7 solid days night & day that Parker would not need this new shunt surgery. The fact that he does actually does not shake my faith at all. I know that I had the faith to make it so--if it was God's will. I still pray. I know that He can, and still pray that He will heal Parker. This makes me stronger...not because we continue to pray for more miracles, and exercise our faith in searching for more, but because we are willing to accept no more, and somehow find peace in that amongst all of these struggles. And strength, too. 

Waiting at Home

Parker seems happy to be home and we are happy to keep him with us for as long as we can.  We have now documented several smile incidents so we are more assured that the ability to smile has not been lost, just suppressed for the last 6 weeks.

He still does not like to be held upright for long periods of time but is less upset when we pick him up from his bed or hold him.

The release from the hospital was uneventful and we were given very little instructions except that the surgery for the new shunt would be later that week or early the next week.  When we called on Thursday they told us to call back on Friday morning so we were fairly certain the surgery would not be that week.  On Friday we talked to Dr. Puget's secretary who indicated that the surgery was not scheduled for the following week either and that Dr. Puget wanted to wait.  That is very open-ended but we are taking every day in stride and trying to not get overly comfortable for concern that things will be abruptly disrupted.

On Friday, Renee took PJ to Garches to do a check-up and things seemed to go well. The intern, Dr Zaylani, was pleased with the clinical process that had been made, he noted that he was more alert and playful which were positive signs. As we are so close to the situation we crave that re-assurance from an outside source to confirm our hopes that he is getting better and Garches provided us that.

He will return to Garches tomorrow and on Tuesday morning we have a meeting with Dr. Couloigner (the ENT) to check up on the discussions for the cochlear implants.  We will try and get an appointment to see Dr.  Puget at the same time to discuss the options for the shunt surgery.  Dr. Puget and Dr. Couloigner are now in discussions on dividing up Parker's head and determining which side the other should operate on.

Life is continuing on here.  Our dear friends the Arnolds welcomed their little boy Maxwell David into the world on Monday night and there is another cousin in the works for our children.  Nana arrived in Paris today to help with the children for the surgery that wont be happening this week but Renee has other plans for the week to make sure that her time here is not a waste. Penelope nightly tests Parker's hearing (at least the high pitch sounds) as she continues the process of teething.   The other girls are all very glad to have their brother and parents home again. Hannah is thrilled that Sarah's birthday is tomorrow so that there is an excuse to make a cake.

We are coming up on the girls two-week Spring break.  We had plans to travel to Spain but we really have no idea of what will happen to those plans, whether it would be irresponsible to leave Paris at this stage or whether it would do us good to take a break together as a family.   In the end we anticipate that the decisions will likely be made for us and we will adapt as needed. 

Parker came home again... at least for a while

On Tuesday PJ moved rooms yet again to the general neurosurgery unit. Previously he was in the step-down constant monitoring unit of neurosurgery.

We started feeling frustrated again as they claimed to be holding him for "observation" but no-one except Renee and Rachael seemed to be "observing" him for the entire afternoon and it was difficult to get the attention of doctors. Finally at 9PM one of the junior interns begrudgingly talked to Renee.

The liquid in the ventricles seems to be new and did not show up on previous scans. The neuro-surgeons need a lateral spot on the cranium which will basically preclude him from getting bilateral cochlear implants and he will be limited to having one implant. The intern indicated that the surgery would be later this week or early next week but we won't know when it is scheduled until Thursday or Friday so our assumption is that it will not be this week.

This morning they informed us that he was being released from the hospital today and until the surgery.

From an observation standpoint, PJ seems much better. He is more alert, eating better and we have two confirmed smiles-- although not captured on film yet.

Renee is looking for the reason for this recent hiccup, maybe the new shunt being put in earlier will help in some other way, maybe it saves an ear for the future allowing a biological solution as opposed to the destruction of the natural ear by the cochlear implant. I can't look to a reason, I just want them to stop cutting into my son. No more pain, healing.

Last night, at roughly the same time, although nearly 4000 miles apart, Renee in the hospital and me in a temple, we independently broke down for a moment. We had kept our emotions in check fairly well recently, but when we allow ourselves an honest look inside we find that we need an emotional release.

We are being led along, one step at a time, each time the light ahead seems to disappear but always comes back just as we put our faithful foot forward.

A week ago, things were looking up, even if this necessarily meant that we were looking uphill. This week we are regaining our footing and get around this new boulder that seems to have fallen in our path so that we can start back up.