Christopher's Homecoming 8

Christopher’s Homecoming 8

Saturday, May 29, 2010, 5:00 pm

One day earlier this week I had a bad day.  Well, if I were to be completely honest, I would say that many days this week have been bad days.  As I sat there on this particular bad day, I was beating myself up…“What is my problem?  I have every reason to be having a good day… actually a wonderful, glorious, magnificent day!  It was only four weeks ago that my child was in a coma, fighting for his life. THOSE were bad days.”  But no matter how desperately I tried to shake off my slump, I simply couldn’t do it.

As I lay in bed that night, I was answering several e-mails and one in particular really stood out.  It was from my friend, Gloria, and she had attached a copy of something she had written four weeks earlier.  She had spent Sunday evening April 25^th with me in the PICU while Christopher was in a coma, fighting for his life.  She told me that as she was cleaning out her files she came across this writing and thought she should send it to me because it reminded her of how far I have come.  THAT it did. With her permission, I share it with you…

“I have a friend, an optimistic-warrior mom who loves her children with a fierce, unconditional love.   Four days ago her 13-year-old son, in a fluke accident, fell out of a tree sustaining a traumatic brain injury.  He was air lifted to Children’s Hospital, Pediatric ICU where the medical staff has been busy attempting to stabilize body function and control the impact of his brain injury.  My heart and the hearts of hundreds of others break for her and her family.

”Sitting with her by Christopher’s bedside, she calmly educates me about his medical condition.  He is in a paralyzed state and deeply sedated so that he lacks ‘awareness’ and will not get agitated or upset.  The numbers on the oft- beeping monitor are measuring everything of importance.  And there is a dedicated nurse who is not diverting her eyes from the story these numbers are telling her of the internal war Christopher’s body is waging. 

”We are sitting together watching two of these numbers specifically.  With limited knowledge needed, we watch the only two numbers whose delicate relationship matters.  They measure the amount of blood pressure in his body against the amount of blood pressure in his brain.  Second-by-second these numbers shift and change. 

”The perfect balance is needed.  Not too high and not too low, so as to decrease or avoid brain injury and to sustain life.  As we watch in silence together her husband texts her, “what are the numbers now?”  But the numbers begin to change in the wrong direction.  “I can’t give him these numbers… he’ll be back on the road to the hospital and he needs to sleep!” 

”She jumps up in a heartbeat, holding Christopher’s hand and gently rubbing his leg while she makes the same simple statements of comfort over and over again; “I’m here Christopher - it’s mom... You are okay, you had an accident.  The doctors are taking good care of you.  Emily is fine and Dad and I are fine as well.  You’re doing great Christopher - we’re all right here, everything is okay.”  “I love you.  There’s no need to worry, just relax - I’m here...”

”Not 45 seconds later his numbers begin to stabilize... it is amazing to observe.  Speaking heart-to-heart, soul-to-soul, in his ‘unaware state’ Christopher heard his mothers voice and his body responded.  Laura turns around and smiles with the confidence of her power as a mother... love that is unconditional, love that reaches where others cannot...  She knows this is her role, her joy, her purpose and no matter how weary she may be, she will remain there, by his side.  The nurse pulls up a chair so she can sit and stay at his bedside.  “Just keep on doing what you’re doing Mom, he hears you!”

”There is a ‘knowing’ between us as mothers... Moms voice and touch - reaching where medicine and scientific wonder cannot.  She smiles and laughs and texts her husband the wonder of it all... Who knew that the direction of two small numbers could have the power of instantly moving hearts from angst to relief in seconds.  Paul is relieved but is texting the same question within minutes...

”It is several days later now. Life has won.  The balance has shifted from loose/loose to win/win.  Now, the new tenuous balance is one of healing and recovery with many unknowns at this time.  Yesterday Christopher opened his eyes.  His mom was doing what she had been doing these past seven days... standing by his bed side... a blink of recognition -- it is enough.”

As I read Gloria’s words, tears streamed down my face.  I loved her recollection of that night in the PICU.  This is what I wrote to her in response…

”Gloria, I am in bed... having endured a bad day.  I don't have a good excuse/reason for my bad day.  It simply was.  I have taken an Ambien and consumed a glass of wine in search of the ever-elusive sleep.  I'm not sure why I haven't been sleeping lately.  One would think that once my boy and I were home, under the same familiar roof, sleeping in the comfort of our own beds that sleep would be my friend.  Alas, it has not been friendly at all.

“I was going through my e-mail, in search of those to which I needed to respond and I came upon yours.  I opened the attachment and soon found myself reading your beautiful words, tears streaming down my cheeks.  I love your recollection of that night in the PICU.  Interestingly, I remember you being there and the comfort of your presence, but I do not remember the text ‘conversation’ with Paul nor do I remember that particular interaction with Christopher and then his nurse.  Thank you for documenting it so lovingly and for sharing it with me.”

Gloria’s words were indeed a gentle reminder of how very far we have come.  Though sleep continued to elude me throughout the week and the bad days rolled in, one after another, I am learning, through the words and encouragement of so many friends that this is normal.  I don’t particularly like normal. I want normal to just go away. One of my dear friends compared the trauma we have been through to the death of a loved one.  He encouraged me to “sit back (and) give yourself some time.” Hmmm…. I am trying, John…

Gloria wrote back to me and this is what she said,

  

“I cannot imagine how exhausted your body, soul and mind must be.  But I truly understand.  Your 'not sleeping' is kind of par for the course you are on.  Too many unknowns for you still and probably unpredictable behavior, which you find alarming.  Bells and whistles don't calm down in your head/heart and body just because you get "home"...

“Try to treat yourself softly.  My nickname is "bulldozer" for good reason -- it is hard for me to cut myself some slack (or anyone else! ha)-- but it's important to be soft with yourself.  You're tired - rest.  Dig in the garden, read a book, stare at the sky for hours.  When I am at my worst, staring at the grass is about all I can do...  So we'll just stare at grass together and try to breathe calmly.”

So this week I started reading a good book.  This evening I am going to stare at the sky.  I am trying to breathe calmly.  I am going to sit back and give myself some time.  THAT is difficult for me to do.  I want everything to be better NOW!  We are having our Friday Family Fun Night tonight.  Yes, it is Saturday, but it is a beautiful day here and our home will soon be full of friends and family.  Mae and Roby are joining us, as well as Mae’s sister, Sara, from the east coast.  Christopher’s friend, Alex is already here and Emily’s friends, Mallory, Natasha and Julia will be here soon.  Another family, Dave and Angela House and their three daughters are coming and are bringing dessert.  Pizza, salads and wine are on the menu and I have a feeling that THIS is just what I need.  Good times with good friends and family.  And my boy, who, only five weeks ago was still in a coma, fighting for his life is home with us… He is walking, talking, laughing, sometimes struggling for the right words, and at times struggling to put his thoughts together properly, but that boy is alive, and for that, I am so very thankful… At some point I will become tired enough that sleep will once again come to me.  For now, I just slog through my days and remember all that I have to be grateful for…

Love, Laura

Christopher's Homecoming 7

Christopher’s Homecoming 7

Wednesday, May 26, 2010, 7:00 pm

To say that receiving meals from friends is a wonderful thing would be an understatement.  The fact that I don’t have to plan, shop and prepare dinner every day is like a huge weight lifted off my shoulders.  And the added benefit is the short time that we are able to spend with each of you as you deliver your goodies! Yesterday we were privileged to enjoy the company of one of my MOPS moms, Sandy and her three darling children. (photo above)

When Sandy first arrived at the door, the kids were still in the car, begging to come in the house to meet our dogs.  Once inside, though, the two little ones were quite frightened, especially of Chief, our 170-pound Great Dane!  I did the same thing that I frequently do when children first see him and realize how HUGE he is… I put him in a ‘down’ so that he wasn’t towering over them quite so much.  As we spent time together, catching up with Christopher and hearing all about his tree-climbing experience, they relaxed, realizing that Chief is indeed the most gentle, loving and calm dog they’ve ever been around.  It wasn’t long before Shelby (photo) was carrying Bella (our 6-pound Shih-tzu/poodle mix who she was afraid of initially) around and petting Chief, thoroughly enjoying both of them and forgetting that she is afraid of dogs! Thanks for the meal, Sandy and kids... it was delicious!

This morning Christopher and I made the 60-mile trek down to Santa Clara, which is south of San Jose to see Dr. Mandac who is now his Pediatric Rehabilitation doctor. Spending an hour with this doctor was an absolute pleasure.  He was so engaging, thorough and professional.  He began the hour by asking Christopher the first thing he remembers after his accident on April 21^st.  He said that he remembers being in the veil bed on the Rehab floor of Children’s Hospital (ahhh…remember the ‘inescapable veil bed’?) and feeling frustrated and angry that he was being forced back into the bed by one of the nurses (I believe it was Bryan).  He didn’t think he needed to be there, wanted to just go home and hated being ‘handled’ that way.  Oh, how I remember that day!  It was Tuesday, May 4^th, 14 days after his accident, and he was in the midst of the really ugly part of withdrawal from narcotics.  His confusion and disorientation from the brain injury were peaking.  Thank goodnessthat didn’t last the 2 – 3 weeks we were warned of! 

As we spoke, Dr. Mandac compared Christopher’s brain injury to an earthquake in a supermarket.  The recovery will be much like learning to ‘re-shelve stock’.    Chris will need to learn to process information similar to deciding which aisle a can of peaches belongs in, what shelf it should sit upon, which fruit it sits with, what brand it needs to be grouped with and which direction to turn the can so that the label can be properly read.  All of that seems so simple to us… like falling off a log, but for Christopher, it could offer quite a challenge.

He told us that one of the things we need to focus on during his recovery is the information he is taking in and remembering post injury.  It is not so important what or even that he can remember and tell us anything before the accident.  That information is there… he simply needs to retrieve it.  It is the learning of new things, the ability to process and understand those things and then the successful retrieval of them that aids in his recovery AND tells us that his brain is indeed beginning to once again function properly.  I LOVE being educated and learning how to challenge my boy to further his healing!

We discussed several concerns that Dr. Mandac has for Christopher, the main one being that he does not want him doing any activities with high risk for another head injury.  This means no biking for six months.  It has been eight hours since Chris heard that news and he is still struggling to accept it.  Mountain biking with Paul is one of his favorite activities and they had already begun planning their weekly Saturday morning excursions when he had his accident.  We knew that mountain biking was not in the cards for quite some time, as well as skiing, playing competitive soccer and, of course, tree-climbing, but we thought that he would be able to hop on his bike and ride to a friends’ house sooner than later.  No such luck. 

I loved how Dr. Mandac spoke to him, though.  He told him that he tends to be extremely conservative in general, but with regard to a severe brain injury, he is evenmore conservative.  “If you fall and hit your head again, Christopher”, he said, “then we will not have the luxury of sitting here and having the nice discussion that we are currently having.”  In other words… another brain injury would result in a much worse outcome… one that none of us wishes to ever imagine.  I have chosen to listen to and embrace Dr. Mandac’s conservative orders.  The road to recovery from his injury is a very short one relative to the rest of Christopher’s life, which we all want him to live fully and completely.

We talked about his Dilantin, the anti-seizure medication that he takes twice a day. Chris’ medication comes in liquid form at this point, but Dr. Mandac much prefers the pill form.  He explained that when dispensing the liquid Dilantin from the ‘barrel’ in the Pharmacy, the place from which the medicine is ‘scooped’, the top, middle or bottom, determines the actual level of concentration of Dilantin (bottom being the most concentrated).  There is no way to know how much actual medication is in each bottle that we receive.  Therefore, he had us stop in at the Lab on our way out this morning to have blood work done.  Based on the results, he will be able to determine the level of Dilantin currently in Christopher’s system so that when he orders the new prescription in pill-form, which has a controlled and measured concentration, he can adjust it to his needs.  It is very important for the level of Dilantin in his blood stream to remain steady rather than vacillating up and down, which will lower his risk of seizures.

Sleep is one of the most important things for Christopher to do to aid in his recovery.  When the brain rests during sleep, it heals.  He has been so tired every day after our mornings out and about at various doctor appointments that he has been spending the afternoons napping.  Dr. Mandac was pleased to hear this and told us that, for now, he should not engage in any sleep-deprivation activities, including sleepovers (sorry, Alex)!

Neuropsychological testing is something that he was going to recommend and was glad to hear that Dr. Sun had already ordered it.  He is going to look at the results after the test and discuss them with me.  As I said in Monday’s post, this will be a two to three hour comprehensive test that will give us a clear understanding of his cognitive abilities and will allow us to know where he needs help.  It will also provide a baseline of where he is now so that we can monitor the progress that he makes as time goes on.

The next thing that I need to do is to contact Christopher’s school to discuss what needs to be done for him to finish out his 7^th grade year.  Something fun to look forward to doing tomorrow!

On our way home from Santa Clara, we stopped in to see my friend, Karen who is the Director of a preschool. (photo right)  The last time she saw Chris was on the Saturday after his fall, when he was still in a coma.  One thing that I am learning is how very therapeutic it is for those who have followed our journey to see Christopher… to lay eyes on him… to listen to him talk, see him walk, smile and laugh.  As we entered the preschool, there were shouts of joy and laughter and he was hugged and kissed, tears flowing freely from women we have never met but who have been very muchwith us over the past five weeks. 

While there, Christopher even got a hug from a very sweet four-year-old, Marissa who is the niece of a good friend. (photo left) It was endearing to hear stories being told about Chris and his accident.  It turns out that Marissa’s mom, Cindy was at a social event where someone she didn’t know was talking about a 13-year-old boy who had sustained a traumatic brain injury.  Cindy told her that she knew of a 13-year-old boy who had fallen out of a tree and was in a coma.  As they were commenting on the coincidence and began comparing notes, they realized that they were both talking about the same boy.... my boy… and they had both heard about Christopher from friends… of friends… of friends… It is absolutely amazing how word of Chris’ accident moved so quickly and even more than that, how loving and concerned everyone was. 

Thank you again for all of your prayers and your words of support and encouragement during this difficult time.  It means more than you will ever know and I will never be able to thank each of you properly.  Just know that they sustained me and continue to do so. 

I love you all,

Laura

P.S. Several of you have asked me to include the link to the Caringbridge website in each of my updates, so here it is:  caringbridge.org/visit/christopherackerman/mystory

Christopher's Homecoming 6

Christopher’s Homecoming 6

Monday, May 24, 2010, 12:30 pm

I continue to be amazed.  It was only 15 hours ago that I sent out an e-mail with a link for signing up to provide meals for the Ackerman family… that e-mail/blog post where I spoke of my reluctance to ask for help… something which I am unaccustomed to doing.  But I did it and the response has been overwhelming.  We now have meals coming to us for the next two weeks, and knowing that I don’t have to plan and execute them is a huge relief!

I’ve been thinking about a conversation I had with a friend seven weeks ago regarding our faith in mankind. We were both in the midst of some personal struggles and were discussing the fact that it was disheartening to think about how many people had let us down.  We were feeling as though depending on others was an exercise in futility. 

It was only sixteen days later that I suddenly found myself in the midst of the most significant crisis and personal struggle I have ever experienced… one in which I found myself forced to depend on mankind.  The immediate and continued response by friends, family and those I have never even met has certainly changed my views.  I have seen compassion, love, concern, and acts of kindness expressed in ways I never imagined possible.  My friend has walked alongside me, though from a distance, like so many of you, throughout these past four weeks.  I do believe that he and I are now due to revisit our conversation about the reliability of mankind….  What I now know for sure is that I am most humbled and my confidence and faith have certainly been restored.  A huge thank you is in order…

3:00 pm

This morning Christopher had his first outpatient Speech Therapy (ST) session.  I was invited to sit in and participate with him, which was quite interesting.  Chris started things out with a very appropriate question for his therapist, Barbara, “Why is this called Speech Therapy when I am not having difficulty with my speech?”  She explained to him that what he is in need of has more to do with cognition than speech, but that it all falls under the title of Speech Therapy.  She then continued by asking him some questions, such as what he remembers about his accident (absolutely nothing!), where he feels he is struggling and what he is going to do to make-up the seven weeks of school he is missing. 

She also gave him several tests to assess the extent of his injury.  She handed him spiral-bound book with sixty drawings of various objects, ranging from the most simple (a helicopter) to the more complex (a ‘yoke’ and an ‘abacus’).  He scored 52/60 and Barbara told him that as a 13-year-old, he had done quite well, the average score for adults being 55/60.  Interestingly, he was able to perfectly define the words he missed even though he couldn’t actually come up with them.  For example, as he looked at the ‘abacus’, he said, “Oh, that’s an Egyptian device for making mathematical calculations, but I just can’t seem to come up with the word…”  GO CHRIS!!!

Another assessment was one she called ‘fluency naming’ in which she asked him to name as many animals as he could think of in a set period of time.  He came up with 24 when the average is 18.  She then read him a paragraph about ‘quicksand’ and had him paraphrase it for her.  After completing her testing, Barbara told us that she sees little intrinsic value in spending time in her office, paraphrasing short stories and such.  Instead, she gave us several cognitive exercises that we can do with Christopher on a daily basis and suggestions for helping him to stretch his recall and comprehension abilities.  These include:

1. Games such as Password, Scattergories, Soduku and Chess
2. Reading and paraphrasing books (I will read the same book with him)
3. Taking notes on TV shows such as Mythbusters and then telling me about them
4. Keeping a list of vocabulary words he has difficulty coming up with
5. Hiring private tutors for Spanish and Math.  These tutors will assess what he needs to ‘re-learn’, if anything, and then continue moving forward by finishing out what needs to be learned to complete 7^th grade and then moving on into 8^th grade work
6. Fluency-naming exercises

I am so pleased with her evaluation and recommendations and feel that this is a very appropriate means of restoring his cognitive abilities and one which will be interesting and engaging for Christopher.  Perhaps 'therapy' won't be so painful after all... We are going to see Barbara again in 2 weeks for a follow-up visit.

I am spending this evening with the lovely ladies from my MOPS (Mothers Of PreSchooler's) group.  I am looking forward to getting away (to somewhere other than Children's Hospital!) for several hours, after having enjoyed the dinner that my neighbor Darcy prepared and delivered to us!  Thank you again to everyone who so willingly signed up to provide meals for us during the next several weeks.  As I said earlier... I am most humbled...

Love, Laura

Christopher's Homecoming 5

Sunday, May 23, 2010, 7:30 pm

Well, I've done it.  I've come to accept the fact that I'm tired.  No, actually, I'm exhausted... mentally, emotionally and physically.  Yesterday I was beating myself up because I was feeling so tired and defeated.  I told Paul and Mae that I feel as though I am weak and incompetent.  I am not accustomed to feeling this way.  Laura Ackerman is strong... steady and stable... able to handle that which comes her way.  Isn't that what I've done for the past month? 

I believe that I have now entered the 'let down' stage.  The fact that I have 'let down' is a good thing.  We are home, together as a family and Christopher is doing so well!  Many of the concerns that we and the doctors had only a week ago are irrelevant today.  Chris does, however tire easily and, as Emily, Paul and I have discussed, he is a bit disoriented... almost as though he is walking around in a fog much of the time.  You wouldn't notice it if you spent 30 minutes or even 3 hours with him.  You really need to live with him to see it.  That's okay, though.  We believe that that will get better as the months go by.  

Back to my fatigue.  I sat here today, reviewing the upcoming week and the many appointments Christopher has with Doctors and therapists.  In addition to that, I looked at all that needs to be done around the house to simply 'catch up' after having neglected things for a month.  I found myself thinking about all of you who have wanted to do something... anything to help us out.  I remembered somewhere in the recesses of my mind, saying several weeks ago that I would set up an account on a website where those of you who would like to bring a meal to us could go and sign up.  My exhaustion and overwhelming fatigue led me straight to that website and I reluctantly set up an account.  It felt very strange... entering the dates we would like a meal brought to us... specifying the foods we enjoy... but I believe that it is what I need at this point. 

SO... I set up an account for Christopher on Caring Bridge, which now includes my blog posts from the past month.  Here's the link to our Caring Bridge website:  

http://www.caringbridge.org/visit/christopherackerman

On the main page where it says "My Story" you can click on the link to provide meals, (or you can simply click on the link below) which is:   

http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=c6d54a0f-e02c-4638-9e16-a2bac6aa859a

From there, I think it is intuitively obvious.  Thanks so much (in advance) for helping us out!  Again, I don't know what I would have done without all of your support and encouragement over the past month!  

I love you all, Laura

Christopher's Homecoming 4

Friday, May 21, 2010, 1:00 pm Chilly, cloudy afternoon... fire in fireplace... dogs napping nearby... watching The Italian Job with my boy... smile on my face and heart filled with joy... yes, life is good... 8:15 pm Christopher was due for a haircut about the time of his accident, so by this morning, he was desperate!  Cindy, our friend for some eleven years has been our 'personal groomer' so we went to see her this morning.  Tears filled her eyes as she hugged him, and we spoke about what a miracle it is that he is home from the hospital, walking and talking so soon.  She and her family have been following our journey from the very beginning, so she feels as though she has been right there with us all the way!  Chris felt like a new man as we walked out of the salon... Thanks, Cindy, we love you! (photo of Christopher and Cindy from this morning) We reluctantly said goodbye to Nicholas this morning as he needed to get back home to Mexico City where he works in the Micro Finance division of World Vision.  We will never be able to thank him enough for being willing to put his life on hold for three weeks to be here with us.  Having our family together during this most stressful time was such a gift.  As difficult as the days were, there was so much comfort in knowing that we were there for each other, together and united.  Family... We love you, Nick, and are going to miss you... (photo taken this morning just before Nick left) As we moved through our day today, I noted several things.  First and foremost is the fact that we have no need for a person to be sitting next to Chris in the car, seeing that his seatbelt is secure and he is not attempting to exit the car.  We are also not concerned about him walking out of the house at random.  These were major concerns only 10 days ago, but because he is not acting impulsively and has very good control over his behavior, we are free to drive about, just the two of us, and we do not have to keep eyes on him 24/7. We are still going to have our home security system upgraded, but it is not a pressing issue any longer.  THESE things have simplified my life immensely!  Thank God for that!   Another thing that I have noticed is that Christopher is aware of and noticing the beauty all around him in a way he never has.  As we drive, he comments continually about all of the beautiful flowers, trees and scenery, especially noting the beauty of Mt. Diablo. (photo) He is in awe of the brilliant colors, the reds, pinks and yellows of the flowers and is even noticing the various shades of green in the trees and shrubs.  This is an interesting thing to me and one that I would like to investigate further.  Why is it that he is seeing the world as though it is all new and amazing?  How exciting I'm going to keep things short and sweet tonight.  Christopher has had a great day... feeling calm and peaceful, which in turn gives me a beautiful gift... the gift of a wonderful day!  His buddy, Alex, who was with him at the time of the accident and was the first person to place the 911 call, came over this afternoon and is still here.  It is wonderful to have him join our family on this Friday evening for dinner and a movie.  We enjoyed lasagne made by our friend, Rosylyn (Yummm...thanks so much, Rosylyn!) and are watching Apollo 13, which is one of Paul and Christopher's favorite movies!  Friday Family Fun Night has been moved to tomorrow, Saturday, due to extenuating circumstances.  We can't wait to see Mae and Roby and spend the evening together! Love, Laura

Christopher's Homecoming 3

Thursday, May 20, 2010, 3:30pm

The difference between yesterday and today is remarkable and something I really needed.  I was feeling so very discouraged last night when I wrote my update, and going to bed feeling that way was tough, especially for someone like me.  I love nothing more than beginning and ending my day on a positive note and it usually takes a lot to get me down.  But yesterday... I was down!!!  I was feeling weak and incompetent, unsure of how I was going to navigate this next part of our journey.  After our day today, though, I am feeling much more optimistic.  I know that there will be many ups and downs, but I will hang onto the 'up' days like today, knowing that eventually there will be more and more of them.

Christopher and I started our day by stopping in at my MOPS meeting.  For those of you who aren't familiar with MOPS (Mothers Of PreSchoolers), it is a group of mothers who meet several times a month.  I have been a Mentor Mom for this group for the past five years.  I am there to provide support and encouragement for these young moms who are raising their families and feeling as though their lives will never be the same again.  What they don't realize is howthey inspire me and they were unbelievably supportive and inspiring during the past month.  It was great to see them all after having been gone such a long time and they couldn't believe that Chris was there with me.  I had the opportunity to talk with them a little about dealing with crises, sharing with them much of what I said in yesterday's update/blog on Christopher. (photo of Chris and I during our talk with my MOPS moms) 

I told them that it is natural to wonderhow we would conduct ourselves in moments such as these, but that the strength and character we possess is often not evident until we find ourselves entrenched in difficult situations.  I encouraged them to continue letting their little ones wander away from them, giving them the independence that they so need to grow into strong adults.  Tree-climbing is still an activity that I full-heartedly support!  All children need to do it!  Accidents happen and the worst thing we can do for our kids is to keep them on a short leash, holding their hands through life and micro-managing them.  I love something that I once heard Amy Grant, a singer and songwriter say... "You either prepare the road for the child or the child for the road."  I have chosen to prepare my children for the road, and my hope is that as they move through life, they will be competent enough to handle, with grace, whatever comes their way.

We had an appointment this morning to see Christopher's Neurosurgeon, Dr. Peter Sun for his post-op visit.  We sat down with him and he went over the CT Scan and the MRI with us, answering all of our questions and explaining a bit more about the injury to his brain.  He pointed out that there is some bruising on the left side of his brain above his ear (image above is of the MRI, and it is reversed, so left is right and right is left)!  The bright area on the side of the image near the swelling (which is toward the bottom) is the affected area that he was talking about.  Dr. Sun asked me what I am seeing in Christopher that is indicative of injury, so I told him about the cookies/cupcakes/sweets interaction yesterday.  I explained that he understands individual pieces of information but has difficulty putting them all together, seeing the bigger picture and making sense of it all.  


It was interesting that after I told Dr. Sun about this, he turned to Christopher, who piped up and said, "Well, those cookies really ARE for ME... after all, the whole reason everyone brought them to us is because of ME!"  I looked at Dr. Sun, who cocked his head at me, as if to say, "Well???" and said, "This really IS different from anything he would have ever said or done... he would have never been so possessive about anything, especially food!"  He said that this is a classic example of the type of injury that he has sustained.  This part of his brain controls recall and comprehension, so none of us should be surprised at what we are hearing from Chris.  I was talking with my friend Yvette this afternoon and she reminded me that he and I had the exact same exchange 10 days ago in the hospital when she was there for a visit.  I asked him if he would like to share his box of chocolate-covered berries with us and he pulled them close to his chest, saying that they were all for him!  I had already forgotten about that!  Recall and comprehension...

Dr. Sun recommended Neuro-Psych testing for Christopher.  This would be a two to three hour comprehensive test that would give us a clear understanding of his cognitive abilities and would allow us to know where he needs help.  It will also provide a baseline of where he is now so that we can monitor the progress that he makes as time goes on.   He is very pleased with Christopher's rapid recovery and feels confident that there will be a great outcome.  We should expect his progress to slow down as the weeks and months go by, which is normal. 

The incisions on Chris' head are healing nicely and we were able to learn a little more about the surgery that Dr. Sun performed on Christopher that very first night at Children's Hospital.  He made the incision (photo above) on the right side of Chris' head, drilled a hole through his skull and inserted an intraventricular catheter, which is a thin, flexible tube through the brain matter into the lateral ventricle, which contains liquid (cerebrospinal fluid, CSF).  The catheter monitored second by second changes in the intracranial pressure (ICP)... remember the ICP... one of the many numbers we were watching back in those first eight days that he was in the coma?  It also lowered the ICP by draining CSF out through the catheter.  


This monitoring is done in cases of severe head injury when there is concern about brain swelling.  In addition to draining CSF, Christopher's doctors and nurses treated the ICP by changing his ventilator settings and giving medications through IV's. The reason this monitoring was so crucial was that raised intracranial pressure meant that both nervous system (neural) and blood vessel (vascular) tissues were being compressed.  Left untreated, it would have resulted in permanent neurologic damage.  Dr. Sun told us today that the fact that the pressure in Christopher's brain never increased to the point that he needed surgery to open his skull was a really big deal, meaning that the injuries he sustained were limited to the initial bruising and bleeding in his brain.  Just another reminder that we are so fortunate to have been at Children's Hospital during this critical time, where the care was the best we could have asked for.  A full-recovery is a realistic expectation.  My walking miracle...

Today as we were leaving Dr. Sun's office, he told me that he had heard about my blog and was wondering if I would be willing to let him link it to his website.  I told him that I would be honored...

Tonight I expect that we will sleep well, having had a wonderful and peaceful day.  I have so much to be thankful for...

Love, Laura