Hydrocephaly, CT Scans, and Christmas!

November has come to mean EEGs and December has come to mean brain scans.

I used to think that Parker's hydrocephaly was the least of our worries. And admittedly, it is not at the top of my list. But I sort of just thought it was the most black and white of all of his problems. Sort of like a broken bone. It's broken, needs to be re-set and then it's pretty much good after that. Until it malfunctions or gets infected or something. Then we'd have to deal with it at that point...but in the end, this may not actually be the case.

So off we went to Necker to get his annual CT cerebral scan yesterday & visit with his beloved neurosurgeon. It's frankly bizarre how much impact she and her team have had on my son's life and our family, whereas for her, its " just another day at the office". I ran into one of the neuro-surgical doctors in the stairwell while exiting, and I was happy to see him & report of Parker's progress. And honestly, he couldn't pick us out of a crowd at Disney, not to mention Necker. It's fine, but still, weird. Imagine how many other babies he has operated on in the past 2 1/2 years since PJ. And I think it's great that we just blend into the crowd--that means its not marked in his memory as being something extraordinarily horrific or difficult. Just standard care post-meningitis. Right? But still, again, bizarre.

But every. single. time. I go to Necker's radiology department, I can't escape there without being ripped wide open with sorrow and emotions that last. It takes me a few days to recover. I slow down, my heart breaks. I just keep seeing images of moms & dads in tears, holding babies with abnormalities, and children in comas doing emergency procedures. A little girl about 6 years old was brought in for an emergency scan on a ventilator, and I walked by her repeatedly, her parents, and accompanying doctor and nurse in masks before me & Peej were sent back to the waiting room awaiting our results. I could feel the stress of all of the secretaries, techs, nurses, doctors for the next hour while they awaited those results for that little girl and her family. And we awaited the results of Parker's routine brain scan. And I think how on earth those people work there is amazing. And they are all angels helping these little children. I am so grateful for them, and pray the Lord will bless them in their service. And bless those they come in contact with hour after hour-day and night-day after day after day.

Lucky for us, we actually get to leave there. For the space of a year, before doing it again. And yet seeing those emotional and worried parents takes me right back to the time we rolled Parker with his increased intracranial pressure in his iron crib with peeling paint through the basement of Necker to get to his scan on a portable ventilator. And every time we met a crack on the floor, we lifted his crib ever so gently amongst the dust and pipes of the basement, and continued onward. And there was silence in that long dark, dirty hallway, except for the loud beating of my heart in my throat, and my uneven breathing- and the continued beep, beep, beeping of Parker's portable ventilator....

And each time Parker does his scan, I am honestly surprised that he still has hydrocephaly. Physically as well as Spiritually. I clearly do not understand the body and how it works. Nor the Lord and His mysteries, and creations. I expect all of the water (or cerebral spinal fluid) in his brain to have re-absorbed by now. And can't figure out why he still has it if he has a drain in there to drain it...does he need a bigger valve to drain it? Isn't it immediate drainage? Like a funnel? Is his brain actually happy with this amount of fluid in the 2 ventricles and frontal lobes (more on the right side?), and THAT is why it retains it? ....and why when I pray for it to be gone, does it still linger? Do I need more faith?

I have learned some time ago not to ask the question WHY? It is inutile, but still, it creeps up from time to time into my consciousness.

I know I have enough faith for him to be healed of hydrocephaly. But do I have enough faith to understand why it is not yet gone? Is this all just part of God's plan for Peej--and do I just need to accept that, or fight for him to get better, be different, be better than he already is....? I feel that it's a fine line between acceptance and indifference. OF COURSE I am not indifferent, but to quietly accept God's will sometimes borders on defeat for me. And I am not easily defeated. I do not want to be defeated.

And if he still has it---(WHICH HE DOES), what are the long term effects on his growth & development & learning? Are the problems he is having now in deaf school related to that right frontal lobe pocket of liquid ? Or just hydrocephaly in his ventricles? Or does he just still need some time to catch up from those missed months of illness? They are asking if we've done a vision/neuro test on him to see if the portion of his brain that controls vision is in fact damaged...if he has a hard time seeing objects on a piece of paper, and in 3-D for example, and realizing that they represent the same thing. And how could it be that my gorgeous niece (also with hydrocephaly and a shunt that has not functioned for 3 years) is not having changes of consciousness, nausea, vomiting, coma, difficulties learning, or even worse, death? These are the risk factors associated with hydrocephaly....does she really need a shunt afterall? And since she is clearly old enough to remember another surgery (unlike Parker who I think will thankfully not remember any of these surgeries), is it worth all of her suffering and pain? Will it better her life? And can we all just function fine with some amount of hydrocephaly, as long as its not putting pressure on our brains?

Those are my questions today.

But here is the official scoop:

1-Dr. P told me yesterday that she didn't even need to look at the scan after seeing how Parker walked, talked, and interacted with us. She said he was fantastic. (I already knew that but its nice to hear to from a neurosurgeon from time to time)

2- She also told me the longer we got away from the surgery (now its 2 1/2 yrs), the less likely it is he will need a repair--ie. it gets kinked or something because he was so small when it was placed and now he is getting bigger and his brain is getting bigger, etc, that he'd need an emergency repair neurosurgery to fix it up again. No biggie. Still could happen, 50% chance. OK.

3-She said we'd do another scan in one year, then if it's good, start to space it out to every 2 years, etc.

4-She concurred with our neurologist who wants to start taking him off anti-epileptic drugs. She said usually after a patient has 2 consecutive normal EEG's, it is acceptable protocol to start weaning them & see how they do.

5-She wanted to see him run. And she did.

6-The scan still showed to me significant water space in both ventricles as well as both frontal lobes, more in the right lobe. But the good news is that the shunt is still in place. And still working.

7-For her, the scan showed a slight decrease in liquid when compared to last year's, and the best part is the brain does not seem to be suffering from the fluid--that the curvatures are still there, symbolizing there is not an inappropriate amount of pressure anywhere.

So, in essence, it's good. Upward and onward we go.

And thank the Lord for our blessings.

And we think of Christ at this time of year, and the Plan of Salvation and being with our beloved family & extended family enjoying them and our common values and love and strength we get from them, the teachings they have taught us and continue to to teach us.

And we recuperate from our many holiday parties, Hannah's baptism, losing our fantastic nanny (We miss you, Amber!), and prepare for Christmas Eve and Christmas.

And prepare for our surprise trip for our children and both sets of grandparents. We leave the 25th and return the 1st.

Life is good. We are oh-so-grateful.

God bless you all and keep you. And many continued thanks for your prayers--present and past for Parker, and anyone else who suffers. I know they are not in vain. I know that God hears and answers prayers. Sometimes it is not immediate, and it is not always the way we expect, but I know that He does. And I trust in Him.

Merry Christmas to all, and all of God's blessings for the year to come! Bring on 2012!

Encore and Again

Ok, you can correct my french if you want, but here's the first two emails I wrote this morning before we headed out and headed up some festive parties today!


Bonjour Dr C & Dr L!
>
> Ca y est! L'implante de pret est arrivée ce matin! 48 heures sans audition semblait trop longue pour nous tous! Parker etait vraiment content quand il est arrivée, et commençais a parler toute de suite apres on a mis, avec une grande sourire! On a commençais avec programme 1... Apres quelques minutes, j'ai tenté programme 2, et il disais, "encore?"..donc j ' ai fait programme 3, et il disais "encore, yah?"...C'etait top!
>
> Merci infiniment pour ce beau cadeau. C'est vraiment une benediction pour notre famille!
> Bonne journee et bon weekend!
>
> Renee HALL et famille



Hi all!
I just wanted to let you know that we received the replacement implant for Parker this morning in the mail! 48 hours without audition was waaaayyyy too long for all of us! He started talking immediately after we put it on. We started on a low program since he hadn't heard anything for 2 whole days. After a few minutes, I couldn't help myself but try & turn it up. He smiled and said, "again?", so I turned it up again. He repeatedly  said, "again?"...until we had it on the highest setting. I am so thankful for this gift of science & technology. And thankful for all of your good thoughts & prayers for us during the past 2 days! I was very doubtful we'd actually receive the implant this morning, and would have to wait until Cochlear was open Monday morning to even speak to someone. Parker was visibly disturbed yesterday, had a difficult time going to sleep last night & always searching for something to watch on the TV/computer or something to destroy. Let's hope today he's better and we have no more run-ins with the toilet!
Kisses to all, and have a great weekend!
Renee and gang

You don't realize he is deaf, until he is....

This morning we put on Parker's implant quickly so he could more completely enjoy his advent chocolate with the sisters before school started. Then we hurriedly prepared for school.

When is was time to put coats & shoes on, I realized he wasn't listening. And he wasn't talking. He had lost his implant somewhere.

I bribed all of the girls to get a special treat if they found it before school started. I signed to Parker "Where is your implant?"and he actually took me by the hand & led me somewhere. I was encouraged, then let down, when we didn't find anything.

So I freaked out and took him to school. I asked the teacher if she still wanted to take him, even though he was deaf. She said, "Of course. I will call you if we have any major problems".

She never called.

I spent the entire day looking for his implant. I looked in rubbish bins, toy boxes, with the Barbies, with the balls, in the dirty clothes pile. I pulled out all the cushions on the couches with no luck.

At lunch I bribed the girls again to look for it. No one found it.

Given his past history of throwing electronic things in the toilet:
1-my iPhone 3 (still haven't got a new one) in June
2-the remote control for the TV ( a few separate times, actually)
3-a battery for his implant (last week--these cost 139Euros btw, and he flushed that one)

I am not actually holding my breath.

When I was in the shower this morning, Hannah came into the bathroom, asking if I knew if Parker had something in his hand. I responded that I didn't know, and "Why?". She said he was playing in the toilet. When I got out, Abby told me there was no way she was sticking her hand in there to check things out. I told her I would. And yet, when I arrived in the other bathroom, Parker, Penelope, and Hannah were standing around the toilet. I could see there was a lot of paper and such in it. As soon as I entered, I heard another flush.

Usually I have a feeling that we will find whatever it is that is missing. Today I didn't have that feeling....and yet I continued to search. I was not totally convinced that it did go to the sewers of Paris, but I wasn't completely convinced that it didn't either.

I am doing better than expected with him deaf though.

I've filed all the papers with the insurance company (the CI cost 6000E to replace),and called his deaf school and the Dr at Necker for advice, then Cochlear, the manufacturer, to get a "loaner"one that we get for one month. If we don't find the old implant in that time frame, the insurance company is supposed to get us a new model. I asked if I could buy some new batteries to replace the 2 we recently lost (one today & one a few weeks' back in the toilet, remember?), and the woman actually told me I should wait to see if the other turns up. If it does not, we will be the proud owners of a newer and better version of a cochlear implant made by Cochlear since his current model is actually almost 3 years old.

That's sort of exciting, but means all of our accessories become obsolete.

So as the day progressed, I realized more fully how useful this machine is to us-----and our little man.

I asked the kids to get on their coats & shoes several times today. Parker just stayed & played wherever he was.
I don't dare let him walk on the side walk for fear he will run into the street and not hear me when I tell him to stop.
Mealtimes there is a lot less singing & fun. In general there is significantly less chatter and laughter in the house. When it is time to do anything or go anywhere, you actually have to find Parker, tap him on the shoulder and motion him to come with you.

I found myself signing to him in silence today. And I felt that we had much more onlookers than usual. I guess I usually speak and sign, or just speak, and people don't notice him as being that much different. But just signing, it actually drew more attention. But I have evolved to be one of those "signers"that doesn't speak if the speech is falling on deaf ears. Not sure why, since he could be reading lips, but its almost as if it's wasted energy in my mind.

He is a lot more isolated. He wanted me to read books tonight to him in bed. It was hard. I tried to sign the stories that we read a lot, with the cadence that I usually use in my voice. Each time we got half way through a book, he closed it and put it down. It's just not as fun to be deaf. It's just not nice to listen to stories when you can't actually hear anything.

And I tried to imagine how much harder it would have been these past few years without him hearing. How much more energy it would require--emotional and physical to get his attention AND TO TEACH HIM THINGS.

And yet I couldn't help but wonder if in his mind, he hears things, when he is deaf. If when we were singing anything today with gestures, if he thought of the melodies in his mind, or if it just turns off a bit when he can't hear. Because it is so obvious when he is not "connected" that he vocalizes a lot less. He becomes nearly mute.

And I wondered about the sound of silence. If there is such a thing...

I recently had two older women tell me that they developed hearing difficulties at an older age, and they both hear very unsettling noises in their heads now. That one woman actually feels her head being pulled to one side, the side with the deaf ear. The other told me she hears constant ringing. That is bothered her for a few years, but now she learns to tune it out. Sometimes she is successful, sometimes she is not.

It's unsettling, right? While at the same time, so very reassuring that we are doing the "right" thing for our son. He clearly enjoys hearing. We clearly prefer speaking to signing. I can't imagine him in a quiet world. I can't imagine myself in a quiet world. I can't wait until our new processor & accessories arrive. Until Saturday morning, Parker will be in the non-hearing world. 48 hours is 48 hours longer than I'd like for it to be.

But it's occasions like this that teach me the importance of us learning to sign to him, so that he understands when things like this happen, and that we can actually communicate with each other. If one day he chooses to be in the deaf world, we need to provide those teachings to him.

The speech therapist for the girls wanted to see Penelope with Parker this week. I think she wanted to hear his voice to see if they were perhaps mimicking a deaf, hollow voice. When she heard him speak, she was stupefied. She said his voice was utterly beautiful. And it is.

So you don't really realize he is deaf, he just seems to be wearing a lot of headgear, until he actually is deaf. Like today. And if you run into us, tomorrow as well.

We are adapting better. A few months back, I would have been banging on the doors of the hospital insisting that they give us a replacement CI in the interim. And would have been fighting back tears all day long.

And it's true that I was much more pensive today, and disheartened, and reflective of where we've been and where we are going. But I could tolerate it. And so could Parker.

I often get the question, "So can he hear AT ALL?" My answer to that question is a resounding "YES! WITH THE COCHLEAR IMPLANT. IT'S MAGIC". But the truth of the matter is that without it he is basically completely deaf. Let's call it bilaterally profoundly sensorineurally deaf.

Just to give it a name.

November means wassail, pumpkin cookies, autumn leaves and EEGs

Summer means swimming & playing all day in the sun, watching sunsets together, reading by the poolside, reconnecting with and rediscovering my children, lots of painting & times tables.

September means new school clothes and lots of kisses on greeting long lost friends, anxiety about new teachers & schedules, and cooler weather.

October means lots of birthday parties, long play dates in the park, getting our feet (and shoes! after going barefoot) under us, and settling back into life in Paris.

November is about wassail, pumpkin cookies, Thanksgiving presentations, and this year: Hannah's baptism preparations. It has also come to mean EEGs for the past 3 years. I distinctly remember my anxiety 2 years ago at the Thanksgiving table and Parker's multiple seizures and adding more meds to get things under control. And then the great news that followed when we returned home to find that DR Q was so pleased with the "normal"results she couldn't wait until morning to email me. Last year, I was weepy and grateful throughout November for our bounteous blessings. This year, all seems to be as it should be. I feel a certain calmness that only comes with great trial.

I feel that I am just a small part of a big universe and I try & ebb & flow with it. I try & love and serve & nurture people around me, and be more intuned to spiritual things, in a spinning world of chaos. I try not to lose my cool. I try to be more organized, and waste and use less. I try to love more, and completely....and read more, and things of value, my time seems so very precious now.

Parker is doing fantastic. It's my new word of choice. Albeit a disheartening meeting with Mr Franzoni and Parker's main speech therapist at CEOP where they think he is having a hard time acquiring & keeping knowledge, his speech seems to be progressing. I had a hard few days following that meeting where they suggested we get his eyes checked, and meet with a pediatric psychologist to get his poor sleeping patterns under control to see if that would help his memory capacity.

But I am constantly reminded of a talk I had with a wise man the weekend of November 6th. He is the president of the branch of our church in Tours, and he used to live with his family in the suburbs of Paris. John & I met with him years ago and I was touched then by his wisdom and intuitive thoughts and his calming presence. He asked about Parker, this time when we saw him. Or perhaps more appropriately, commented, on his health & strength as he witnessed his activities during church on Sunday. And he told me, "You know, the prayers that were offered in Parker's behalf are still coming to pass. They are still valid and in place for him today...." When he said those words, it was like a calm whisper to my soul. I guess I knew that in the bottom of my heart, but at the same time, I feel like life has moved on. The major prayers have already been answered: He lives! He walks! He talks! He hears (with his CI)! He is so very happy to be part of this life. And so I forget that those many prayers offered long ago are still helping him today, and will continue to do so for as long as he needs them.

And he still needs them.

And I still need them.

We need them less, and perhaps less often, but there are times when we still desperately need them.

I was worried about his EEG. All that it means, it's exhausting keeping him awake until we get there, forcing him to put the spiderman cap on, and all of the sand and water, and holding him in my lap, trying to get him to understand why and what we are doing, the myriad of questions from the EEG techs and just interfacing with the dirty, old hospital, and all of the people there with illness and heartache & suffering....but this time, it was so easy.

He marched in like a big boy. He climbed into the chair all by himself. He put on the spiderman cap, and let them start to work, hooking him to electricity and computers.

He smiled the entire way through. And evidently, the techs said that all looked as it should.

We are awaiting official news from Dr Q, but it was truly just another day in the hospital, like another day in the park, for me and Parker.

And now we ask the question since his EEGs have been normal for some time, whether the neurologist at Necker is right in thinking perhaps now is the time to take him off his epileptic meds to see how he does without them.

It's scary & encouraging at the same time.

We have much, much much to be grateful for. I am grateful every day of the year, but thankful for a holiday to express these thanks even more so.

I thank God for trial, and suffering. I thank Him for forcing me to grow in ways I never dreamed possible. Repeatedly. I thank Him for answering my prayers every day, not only for Parker, but for 4 gorgeous daughters, a loving husband, unwavering friends, and family. I thank Him for health & strength, and science and technology. I thank Him for opposites-good and bad, health and sickness, virtue and vice. So that we can differentiate between them, and choose right and goodness. And appreciate the health and happiness when we have them.

My heart is full. My life is rich. In essence- WE ARE FANTASTIC.

It's so much nicer responding to the question, "How are you?" With this reply. For years, I just avoided the question by asking the asker the same question.