Hope is California Dreamin'

March 7, 2008 Friday

Just before I took my sister and her kids to the airport, I took Hope's 1-year professional portraits. The photographs were important to my sister as she did not want Hope wondering why her siblings had their studio pictures taken and not her. So here it is, the theme was about the Beach- after all where else would be more appropriate than in sunny California?

I miss them already!

Hope Arrives to California!

March 3, 2008

Cohen and Kai sit there looking like a couple of peddlers (or wanting to be stepped on) in the middle of the airport baggage claim area. While Hope quietly sucks her thumb, patiently waiting for her mama to change her very soiled and stinky diaper (I almost puked smelling that!)


My sister Cheri has been up for over 48 hours having completed her graveyard shift as a nurse and packing at the very last minute for this trip. Therefore, she forgot to pack more diapers and Hope had her stinky surprise ready for mamma on the plane.
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In fact, Cheri did not know what she had packed so when her luggage did not arrive- she could not indicate to customer service what would be in the bag should they find it. All she knew was there were "clothes" in it.
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So while Cheri dealt with lost luggage, I chased after 2 boys running around the baggage receiving area with 2 strollers (1 with Hope in it) and the other with a couple bags in it. Talk about coordination and a good juggling act! At one point, I had to stop and tell off a couple of women who were staring at Hope's physical shortcomings. They were so obvious about it, that I became irritated and said "It's called APERTS"- which they were taken aback and a little wide-eyed with my approach. I wanted them to know I was watching them, and they should be more discreet.
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Hope had her first flight and visit to California, Cohen was excited to see Kai who did a quarterback maneuver on him (see video), and I was glad to see my baby sister had survived the flight with both hands full with kids and with barely any sleep. As soon as we got home, I returned to work for a couple hours, while Greg brought home dinner.
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Tonight was short for them, and just like I had done for my sister decades ago, I tucked her into bed (she was near delirious) and later put Hope to bed, then later chased Cohen to get him dressed and then put him to bed too. He too must have been ready to wipe out as both he and Kai stayed up to 11pm playing.

Hope Comes Home!

August 18, 2007 Sunday
Just a little over 2 days in the hospital and Hope was given the A-OK to go home! Cheri had no problems with the hospital release as she really preferred to have her home to decrease chances of contracting an infection in the hospital, (and the fact that she is a nurse- so she more than qualifies).


The boys had been playing out in the rain, perhaps waiting for Hope to come home. Adira chases them down as they would venture closer to the street.

Hope has just arrived!

Video: Hope arrives home!





Observe the surgical incision in her skull- there is no sign of infection and the wound looks clean.



Nana and Adira welcome Hope home.


Daddy Matthew's family shows up to see Hope for the first time.

Video: Hope wants to eat ice cream!

Hope continued to do extremely well and was more interactive with her surroundings. She will continue to be on antibiotics and pain meds, and she has a hefty appetite and barely cries.

Welcome Home Hope!

*By the way, Children's Memorial Hospital raised $1, 847, 912 in 36-hours!!! For more info goto http://www.wtmx.com/
Video: Interview with Hope's parents.

It was great to see the group Plain White T's perform and to hear Cheri and Matthew on the air- to help raise money for the cause.


Uncle Fredi (aka boNes, my brother) came by to visit and have dinner with us. He is one of 3 brothers that are having their birthdays within 15 days of each other. I presented him with a Simpson avatar mug that I designed for his b-day. It's sorta funny that he just happened to be wearing a black shirt with the cross bones on it - what a coincidence!

Our visit with HOPE today

August 18, 2007 Saturday
We drove into the city early am to beat the crowd at Lakeshore Drive that would be backed-up, with people there to see the popular Air & Water show. On the way, Cheri listened to the radio for the 36-hour phone-a-thon. The day was overcast and I felt my mood sink when they interviewed a crying mother about her son that had died from cancer. Then my sister blurted out in laughter, which surprised me as I wondered why during this sad speech. Cheri was laughing at me! because she could see me make faces as if "oh no, here we go again!" and that I was rolling my eyes skyward as I listened to this depressing stuff (I did not realize I was doing this). I then asked her to change the station as I would hate to meet Hope in such low spirits, and knowing that Hope will feel this from me.

At a stop light to turn towards the Children's Memorial Hospital, I stuck my head out the car window and waved this guy down to give us free fans with a sunglass /filter attached. Great idea- unfortunately for the show, the fan was useless today on this overcast and looks-like-it's-gonna-rain day- but the kids had fun playing with it.


As we entered the hospital, 2 photographers approached me and wanted to take pictures of Kai to be used for some advertising for Children's Memorial. I told them they should also take pictures of Cohen and Adira as they were siblings of Hope who had surgery just yesterday. So while Kai was too busy running from the photographer, hiding behind my leg, and at a last resort purposely sticking his finger up his nose in front of the lens- they switched their attention to Cohen. When they tried to photograph Kai again, Kai took to sticking his finger up his nose again!

GEEZ! This is definitely the end of his modeling career. Hopefully they got some good photographs.

101.9 FM was still running their phone-a-thon (to end 6pm tonight).


We took the elevators to the third floor to visit Hope.


The place was definitely child-friendly with trees painted on the walls, railroad tracks, leaves, or duck prints on the floor, and butterflies painted on the ceiling. We took a few Nemo stickers for the kids.



Mom was happy to see us, as she had spent the night there. Mom had been vomited on and sneezed on (blood flew out Hope's nose and hit mom) and in my presence she was passing gas quite a bit. Hope looked amazingly calm, as if in zen, and evaluated us as it seemed, while in her hospital stroller. In addition she appeared to be more interactive as she also had auditory tubes inserted at the time of her cranial surgery.


Hope checks out her big sister Adira.


Cute band-aid on her foot.


A part of the skull was removed at the top portion of her head where the bulk of the bandages were placed. To my understanding, this part of her head would remain unprotected by bone, but the skalp was sewn shut- to allow the brain to expand and grow normally. Her skull bones were also shifted forward to give her the brow. She would have the bandages removed upon hospital discharge and 2-weeks later have a helmet made for her to wear on a regular basis.

Hope looked great! The doctors and nurses were amazed that there was very little swelling, as her eyes did not swell shut.


Cohen kisses his baby sister.


Kai wants to touch Hope's face, of course I won't let that happen!


The boys peer out from under the patient curtains curious to see what is happening on the floor.

Nosey. Nosey. Yes, indeed! But get off that dirty hospital floor boys!

I cuddle Hope, and she lets me without a cry, and she is detached from her monitor to allow us freedom to walk with her on the floor.



Me being the clown that I am, convinces her mommy that Hope can read the nurses names on the bulletin by pointing them out when I direct her to.

Hope gets a little fussy and guzzles her formula down in a few minutes. Occasionally, I would have to remove the bottle to let her breath better, as her O2 sat dropped under 90, (happens when you eat at the same time).

Poor baby was having a bum rash and we repositioned her to one side to improve her circulation to her bottom of the static pressure due to being in her car seat for several hours. She would not be laid flat as the blood from her surgery may not drain properly and could cause increased cranial pressure. Hope began to play with her IV on her foot. Somehow she managed to hook the IV line with her thumb! We had to tape the line down more strategically.

I did some leg exercises with Hope, massaged her legs a little, and then tested her visual tracking. I was pleased, as was her mom, that she was tracking with both eyes (and symmetrically) a brightly colored toy flower. With subtle movement, Hope turned her head to look at the flower. After awhile, she began to fatigue with this activity and here eyes grew heavy followed by sleep.

I hung out in the waiting room/ children's playroom with mom, Adira, and the boys. When it was time for us to leave, Hope's temple area was beginning to swell about an inch laterally. Her eyes looked like they were getting swollen... we were warned the swelling may occur within 24-36 hours. Hopefully, not too badly- but when she got fussy, and began to cry- they would medicate her.

Mom Cheri takes a stroll with Hope on the floor...

Cheri will stay behind, while I drive nana home with the kids. Daddy Matthew is to arrive later that evening to relieve Cheri- he will be sleeping over tonight with Hope.

Hope's surgery and her radio broadcast!

August 17, 2007

Hope left the house for her surgery 5:20 am. I did not see her off as I was not awakened. However I was the last person to say goodnight and a prayer for her before I turned in for the night. I could not help but say over and over again to myself that no child should have to suffer this way- no child whatsoever. And it was painful for me to see that she was going to go through a lot of changes in the next 24 hours.

My family was very good at keeping me informed while I stayed behind and watched Cohen and Kai. I also heard the Chicago traffic was bad, which made them a bit late- but Hope still got processed immediately for surgery. My sister had told my mother not to come until a few hours into Hope's surgery (or be stuck in traffic). But my mom was persistent and of course got stuck in a traffic crawl. Mom had an emotional breakdown and was crying enough she had difficulty seeing through her tears while behind the wheel. Mom would not see Hope before the surgery...

I had nervous energy and seriously cleaned my sister's home, pulling out furniture to vaccuum, organizing their miscellaneous drawers, sorting their mail,etc. All the while keeping an ear out for an announcement on the radio and web station. I got word that there was a 36-hour fundraiser for Children's Memorial Hospital in Chicago that would be broadcasted on 101.9 FM and on WTMX.com, on the web tv. Here are some words I caught on video.

So from 8am to 4pm, Hope was away from her parents and in surgery. A very stressful moment not knowing exactly was taking place in the surgery room. My brother Derek and Jen dropped by to give me her digital pictures and just in time as I write this blog.



Hope after surgery.

Hope's head was asymetrical and had a problem with her right eye that protruded quite a bit. She also didn't have a brow, which to protect her eyes. In the end, the surgery was a success! She appears to be symmetrical and now has a brow. Her eyes also don't appear they are protruding at the looks of these pictures.


Hope with nana Doreen and Mommy Cheri.




My brother Derek and girlfriend Jen with Hope.


And happy parents Matthew and Cheri.




Adira checks out my phone (pictures) and her own for updates on her sister Hope. Our first view of Hope came to us as images via the phone.




Adira holds Hope's locks of hair, from her "first" haircut (in surgery).


Hope will stay in the hospital for the week, and nana is staying overnight at the hospital to be with her. Matthew and Cheri come home looking relieved, overwhelmed, and exhausted from the day's event.

And to add to the good news, Hope did not need to be placed in ICU! She is stable.

Hope's portrait w/siblings...the day before surgery.

Cheri wanted me to take this picture of her holding Hope's little head before her cranial surgery tomorrow to be held in Children's Hospital in Chicago. She also wanted her children's portrait done, so that Hope will have proof of how she used to look. But most of all, I believe, to know that her siblings were there with her too.

Later this afternoon, Cheri becoming extremely queasy and thought she was getting a stomach flu and found difficulty trying to stand erect. However, we had eaten the same meals both for breakfast and lunch. I thought perhaps it was her nerves acting up concerning her daughter Hope. Sure enough, she believed that's what it was, when she check on sleeping Hope- her stomach began to twist and do flips. I had her go out for an evening walk alone while I stayed with the kids...just to help ease her tension, clear her mind, and get some exercise.


Hope just loves to look at her feet and to stick 'em out from under the covers.