A Four Day Weekend Hi"jack"ed

The boy's still got it! Just when he begins to overwhelm you with cuteness, he reminds you of his powers. The weekend was rrrrrufffff, to say the least. This in part due to the fact that we have become creatures of habit. Suddenly, our carefully designed schedule was thrown out of whack leaving us with 4 incredibly hot days, no babysitters available, and Jack. This means we were limited to being in our house, going to the mall, very early morning outings, museums, and the pool.

Aside, walking around a museum, with a baby spitting up on you, after sitting outside waiting for it to open in sweltering heat and humidity, ultimately results in lack of appreciation for the art inside. Jack liked it. He seemed to like anything this weekend that did not involve sitting and relaxing or us sleeping through the night.

Yesterday he had an "aha" moment...he suddenly realized that making us pick things up that he drops is fun...good timing Jack...push us to our limits and then toy with us. This is why you have earned the nickname "The Sultan".

Our New Business

Many of you have heard, Susie and I are planning to start a business as soon as possible. Originally we planned to be up and running right before Jack was born. Then, it was as soon as things settle down and get a bit easier. That of course didn't happen until about 4 months. Then, it was as soon as the "monster" is taken care of. Well, finally, it feels like we are ready to begin. Unfortunately, school is now out. So, the plan is to have the program up and running by August when school starts again. For those of you that don't know, we are planning to start with a rudimentary tutoring service and grow into a full blown counseling center with academic services as well. The hope is to eventually quit our current jobs, provide private counseling services, and hire teachers to work as tutors in our tutoring services.

Here is a link to a prototype webpage for our program: http://www.geocities.com/raskincounselor/homeworkclub

Take a look if you have the chance...we welcome feedback and suggestions with regard to the webpage and program itself as this will be helpful in understanding what may need to be clarified, changed, added, or deleted altogether.

The Monster Eludes Us

Great news: The monster is hibernating or at the very least not getting any bigger or, even better, may not be there at all!!!

Jack saw the neurologist today. We set out this morning at around 8:45, about an hour before the appointment. We arrived in the waiting room which was familiar this time and less scary, for me at least. Surrounded by children living with and surviving such things as head traumas, brain disorders, unknown problems, and so on, we watched Beauty and The Beast until being called back to the examining room.

Last night and today, I was worried. Flipping through worst case scenarios as not to totally fall apart in the off chance we were handed bad news today, I felt exhausted. Over the past several days, I hardly thought about it at all. But NeuroEve and NeuroDay are a whole different ballgame.

Anyway, we got in to see the nurse first and she examined Jack briefly asking us some basic questions while flipping through his chart and MRI results with a very serious look on her face. Then she smiled and commented on the extreme cuteness of our baby. Then she left and Susie and I played catch with Jack. He laughed hysterically as we waited. It was all I could do to keep from jumping out of my skin. Waiting....ahhhhhhhhhhh!!!!!

Trumble walked in and commented on how it definitely didn't sound like a sick baby was in the room. Somehow this was a relief even though he had said nothing yet about Jack's status. Then he asked if the nurse had mentioned that the MRI came back looking good. We said she had not said anything. He then said that it had indeed. Before he could speak, I interupted and I asked what exactly this meant, as if he wasn't going to say anything else and leave. He went into a quick discussion about the prognosis and process of forming an opinion. Basically, he said the following:

First, we were attempting to diagnosis with the first CT scan and MRI in February.

Next, we were attempting to confirm stability (no growth of the cyst or brain damage/developmental problems) with this MRI and follow up.

Now, we wait 3 months and do another MRI to check that there is continued stability.

Then, we do yet another MRI 6 months from then, then 12 months from there, and 24 months from there.

This basically means, we will be monitoring him for the next 45 months or nearly 4 more years. He will be almost 5 before he is considered to be in the clear, even though this will never be absolute.

If at that point there has been no change in the area that appears to be a cyst, it will be assumed that there may not be a cyst there at all and, in fact, just a space left by an abnormally shaped right parietal region of the brain. This would essentially mean nothing, according to Trumble, in that many people have brain disparities from the norm in shape and size and don't even know it. Further, because he was born with such a disparity, it is, according to Trumble, going to have a zero effect on development or ability as the rest of the brain will compensate fully for any inability of the right side to perform, if this is even the case.

If there is a change in the space above the right parietal region of the brain, then this would mean there is a cyst and that we may need to consider operating but not definitively still.

Essentially, barring going into Jack's head, there is no way to know for sure if there is a fluid filled cyst in the space indicated on the MRI or simply nothing but space above his brain due to a mishapen brain.

Monster or no monster at the end of this book...still to be determined.

I have added pages from the Grover book about "The Monster" to all of my past entries about Jack's Monster...more to come but that's all for now. Flip back through my past entries if you want to see my favorite book about a puppet that some would say has similar coping skills to myself...Susie!

The Mountain

Really, it's not so bad, waiting. The first time we took Jack in for his MRI we didn't know the extent as to what they would find. In fact, all we knew was there was a growth of some sort. We certainly had know idea as to the prognosis. This time was very different.

We arrived at the hospital at around 7:15. At this point, we have the hospital down pretty good. We don't need to ask where anything is or ask about protocols any longer. So, we went straight to the financial department to take care of billing and check-in. Within 10 minutes we were off to radiology, our 3rd visit in about 4 months.

A large flat screen t.v. was showing the old Charlie and The Chocolate Factory. We sat down to watch and wait. Susie indicated she didn't remember the movie and seemed excited to watch. Jack, on the other hand, prefered to stare at the people filtering in so early in the morning. Surgeons, nurses, patients, and their entourages flittered by, moving to and from unknown places. One particular boy caught Jack's attention for a few minutes as he crawled around on the floor playing with the toys.

At some point, Susie indicated she wasn't feeling so good. She stated that her fingers were numb and she had the chills a bit. I looked at her and noticed she looked pale and it dawned on me that she hadn't eaten before we left. I suggested she might need some sugar or something, knowing that she tends to get a little queezy when she hasn't eaten. She seemed to indicate that she didn't think that was it but didn't dismiss it totally at the same time. At this point, it was around 7:45am and our appointment wasn't for another 45 minutes.

We continued watching the movie. Jack bounced around on my lap while the increasing number of hospital empoyees stared, waved, and smiled at him. Occasionally, someone would talk to him while walking by. Susie was shaking like a leaf at this point. I started to get worried. She had never had any physical reactions to stress that I knew of, much less witnessed. I asked the nurses at the front desk for a blanket and they quickly brought one. Jack continued to seem fine and I attempted to divert his attention from his mother who was quickly seeming worse and worse. I felt the need to pretend everything was normal and decided not to show an ounce of concern, at least when he was looking at me.

After about 15 more minutes, Susie decided to get some food and sugar from the cafeteria. While she was gone, which seemed like forever, Jack's crawling friend had slowly progressed into a gutteral cry not unlike the cry I remember Jack doing before the "time we don't speak of" stopped about 4 months ago, a.k.a. colic hell. The parents of the child were walking around, rocking him, and attempting to soothe him through talking. However, nothing seemed to work, also painfully familiar. I wondered why they were sharing the waiting room with us? What were they getting checked out? Was the boy okay? I did know that they too could not feed their baby boy as we were unable to do with Jack. It is incredibly frustrating to know your baby is hungry, have food for him, have the means to give it to him, but simply not be able to do to waiting. This is precisely what I think purgatory would be like if it were real...The Davinci Code II to follow.

Jack and I moved to the floor to play with the toys. By the way, Jack was incredibly easy the entire morning. He played, talked, smiled and played some more. A nurse appeared indicating to myself and the other family that things were running a bit behind due to an intensive care unit MRI emergency. She added that each appointment was running 30 minutes behind. We all figured out from her comments that Jack was next and then the screaming baby. Things became a tad uncomfortable as the other family indicated that they didn't know what to do. The nurse suggested they take a walk to calm their baby. Suddenly, 8 months of stupid suggestions from people that don't know what to say flashed before my eyes. The parents of the crying baby quickly but unaggressively stated that they were beyond the point of walking help. They reminded the nurse of the fact that their baby hadn't eaten in over 9 hours and added that he typically eats every 3 hours. The father of the baby stood up with his son and began walking...seemingly just to get away from the nurse. As if unable to recognize that she was not helping or able to help, which probably would have been helpful in and of itself to acknowledge at this point, she then offered to take the baby and give the parents a break. Now, I ask you, what parent with their baby screaming, getting ready to go through what amounts to a very emotionally difficult procedure to witness, and all of the problems associated with the reason you are there in the first place, would hand their baby to a stranger?! Needless to say, the father and mother, in unison, indicated that they did not need her help and she finally walked away, looking confused.

I wanted to offer our spot as Jack was still maintaining so well. However, I knew that he could fall apart at anytime. Plus, I didn't know what was happening to my wife who was still gone. I told the mother of the screaming child that I wanted to offer our space but discussed our situation. She quickly indicated she understood and then jumped at the chance to have a set of ears. She launched into their story from the time their baby was born to the present. Their baby was diagnosed with spina bifida at birth. After several intitial procedures, they were discharged from the hospital after over a week of monitoring. They saw a specialist doctor who ordered a follow up MRI within 2 months, however, the MRI appointments at the very hospital we were sitting in were so backed up that they were forced to take an appointment some 5 months later. This resulted in the baby having symptoms and irreversible damage due to the 3 month lag that could have been caught and prevented if checked within the suggested 2 month time. She then discussed what the baby had gone through, while I knew full well what this meant she and her husband had gone through having experienced a taste of the horror myself. While having this conversation, I watched preemie babies file in to be checked, some of which probably didn't make it through that night . I saw numberous children with head traumas carted by on stretchers. I also saw our very own neurologist, Dr. Trumble walk by apparently working with the ICU patient that was currently receiving an MRI. He smiled at me but didn't seem to remember me. It didn't matter...I could tell he cared by the look in his eyes.

At around 8:25am, Susie returned. She looked even worse. She was registering a 7 on the richter scale at this point and looked white as Jack's bum. She told me she had vomitted on the way back. The nurse called us back right as she returned. Holding Jack, who was still smiling away by the way, I told the nurse about my concern for Susie who was trying to keep up and stay wrapped in the hospital blanket. I continued to try to keep Jack from noticing my concern for Susie and decided not to face him towards her as I didn't want him to notice her state. The nurses grabbed more blankets for Susie as they "ooed" and "awwwed" over the cuteness of our little boy. I swear, his cuteness seems to get us extra attention sometimes as people marvel over his big blue eyes and charming little 8-toothed smiles. As my Aunt Krazie says, "pretty is as pretty does" and pretty is doing pretty good for us right now.

Within, 15 minutes, we met with the anesthesiologist, were briefed on side effects, dangers, and the overall procedure. Everyone was very appropriate. Susie continued to shake and I had become much more worried about her than Jack at this point. The nurses took Susie's blood pressure and deemed it within the normal range. They suggested she may have succumb to a virus. Then they moved in for Jack indicating they were ready to move along with the MRI as the trauma patient had been moved out. I handed him over and turned to Susie. While last time, I did a similar thing, it was to look at her for emotional support. This time, I looked at her out of worry about her. Suddenly I realized I had just handed Jack over. I shouted back to the nurse, "wait, stop, hold on just a second". I caught back up to them and kissed him on his forehead and told him to hurry up. Then I turned back to Susie who had just realized Jack was headed out, she broke down into a much deserved and needed cry. I asked for a stretcher or something for her to lay on which a nurse brought in. Susie curled up and began to fall asleep until, within 2 minutes, she was told we couldn't stay and would need to move back to the waiting room.

Back in the waiting room...the room had filled up with patients. Kids needing MRI and CT scans were everywhere. The majority of those in the room were minorities which I wondered about. Susie, wrapped in 3 blankets sat, head against the wall in a chair trying to sleep. Kids ran around, playing and fighting, while parents looked tired, trying to coral them and sometimes just letting them do whatever they wanted. I stood in the middle of it all as if at the top of a mountain watching a town below. The back door to the room Jack was in was within 10 feet of me. Above it, a sign that lights up read, "Do Not Enter, XRAY In Use".

I stood there, my senses hightening with every minute. I swear, I heard every kids conversation, every adult conversation, every nurse apology that it was taking so long, every sound of discomfort Susie made, every clicking noise made by the XRAY In Use signs above the rooms Jack was not in, all while Finding Nemo played behind me.

After about 45 minutes, I took notice of the fact that I hadn't heard the sign click above the door Jack was in. While I wasn't staring at it by any means, I felt like it simply hadn't come on. I felt like something wasn't right. Susie stood up and went to the bathroom to seemingly get sick again. I continued to stand. She returned and the light above Jack's door clicked on. I wanted to run in but simply stood there. I felt like I was guarding Queen Elizabeth or something of the sort. It had become very surreal at this point. I began troubleshooting how to get Susie to the ER and take care of Jack in the case he wasn't doing well after the MRI. I decided to call home whereas I asked my mother to meet us at home in case I needed her. She agreed without asking a great deal of questions. I felt like everything was going to work out fine but still watched Susie, growing more and more concerned.

After about an hour, a nurse called for us. While walking back with him, Susie following wrapped in blankets, I told him of my concerns regarding her again and the need for monitoring of her. He expressed concern and agreed to pay attention to her. He then indicated that Jack had been given an extra dose of anesthesia while in the MRI do to the fact that he awoke right at the beginning and ripped the IV out of his hand. This was cause for a new IV and a delay in the overall procedure. We arrived in the receiving room where Jack slept. His mouth open, laying on his back, breathing with an oxygen tube and monitors attached to his chest and arms running to machines everywhere. The nurse standing by him said, he's fine but suggested he would sleep for awhile in all likelihood due to extra doses of anesthesia needed to put him back under. I was quiet, watching Susie shake. I prepared Jack's bottle for when he finally awoke. Then our nurse from the pre-MRI check in peaked in and said something (I can't remember what) really loud. Jack's eyes opened and I rushed over smiling and kissing his head. He squinted and I expected maybe he would go back asleep but he stared at me instead seemingly trying to focus. He talked, "ba, ba" which this weekend we decided may be an attempt at saying bottle. I picked him up, wires and all. Susie stood up and smiled at him and then crouched trying not to get sick. I sat down and began to feed him as he lay wide awake sucking away.

After 20 more minutes, while I fed him and the nurse freed him of wires, tape and cleaned his blood covered hand from where the IV ripped out, we were told we were free to go. Jack was wide awake and his normal self before we even left the waiting room much to my surprise and seemingly even more surprising to the nurses. I was proud of my baby who was making it easier for his mother who needed desperately to go to bed.

Home we went. My mom arrived after Susie was in the bed and Jack was eating his bottle of formula...he only had Pedialyte at the hospital. She stayed watch over Susie while Jack and I went for a long walk.

By 8pm Susie was almost back to normal. I had finally come down from the mountain as the Queen was safe and Jack was asleep, safe and sound, in his crib.

Time to wait for the next appointment. Wednesday we go to Dr. Trumble to get the next set of plans. Waiting is easier when you know what's in there. We will either find out that the cyst is larger causing pressure on the brain and we need to commence with surgery, the cyst is not causing any pressure on the brain and we will need to wait, or some other scenario which I have grown to expect as nothing seems to go as expected these days.

Jack Update

Thought I would quickly let everyone know, Jack is doing great following the MRI! He's so brave. Details of the day to follow as it was still very dramatic of course. Today we plan to crash a Lisa Loeb concert at Lake Eola so I've gotta go. Jack's in his Led Zeppelin onesie and we are bringing cherry tomatoes for him to bombard her with. I can't even remember the one song she sang. Oh well.

Some Good News

Well, we are officially 24hrs. from the "procedure". Yesterday, Jack got some very good news. Instead of his appointment occuring tomorrow at 2pm resulting in him having to fast all day until it is done, we were bumped up due to a cancellation, to early morning. This essentially means Jack won't have to fast at all. He will simply sleep through the night, wake up, and go get his MRI. After that, let the feast begin!!!

Nice to have a positive spin on all of this for a change. After next Wednesdays appointment, we should know the latest in terms of treatment, prognosis, and where we will go from here...hopefully nowhere! However, we won't know anything until then. We promise to let everyone know as soon as we do.

Some of the Places I've Been and Things I Have Seen...Thus Far

I decided to make a list of the places I've been so I can reminisce as I long for travel...I plan to continually add to this list...adding places I forgot that I've been as well as new places I go. I didn't realize how many places I've gone until I did this. I guess I'm pretty damn lucky!

St.Thomas, Virgin Islands

San Juan, Puerto Rico

Port Au Prince, Haiti

Uffizi Gallery in Florence, Italy

Rodin Museum, Philadelphia, PA

Orsay Museum, Paris, France

The MET in New York City

Zermatt, Switzerland

Yosemite National Park

The Taj Mahal

Sienna, Italy


Pushkar, India

Paris


The Painted Desert

Milan, Italy

The Louvre in Paris

London

The Amber Fort in Jaipur, India


Oahu, Hawaii

Greve In Chianti, Italy

The Grand Canyon

Florence, Italy


Diamond Head in Hawaii

Dharamsala, India at the Foothills of the Himalayas

Dehli, India

Rome

Amsterdam

The Keys

Sun Devil Stadium in Phoenix, AZ

Carlsbad Caverns

Hollywood

The Redwood National Forest

Las Vegas, Nevada

Tims Ford State Park, Tennessee

Wekiva Springs, Florida

Washington D.C.

Blue Springs, Florida

Atlanta, Georgia

Wonder Cave in Tennessee

The Riverwalk in San Antonio, TX

The Alamo in San Antonio, TX

Sun Studios in Memphis, TN

Philadelphia, PA

Nashville

Memphis

Jack Daniel's Distillery in Lynchburg, TN

Chattanooga, TN

Worldsfair in Knoxville, TN

Houston

Galveston, TX

Foster Falls in Tennessee

Fall Creek Falls in Tennessee

Dallas

Amarillo, TX

New Orleans

Baton Rouge