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©2017 by Hope For Marian, Los Angeles, CA

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Number Four

May 24, 2017

 

Two of my best friends from law school traveled to Chicago with Marian and I this time. I didn't realize how much I was missing and needed time with them until we were all together. Kim, Diana and I have been a trio of friends for over ten years now. We used to all live near each other in Los Angeles with our other close knit law school friend Vickie until a few years ago when everyone got married and Diana moved to Arizona, Vickie moved to Washington, and I moved to the distant suburbs. Vickie, Kim, Diana, and Sarah were and are some of my closest friends. We used to do annual trips to Palm Springs, laying by the pool talking about getting tan, books, Britney Spears and how we would band together to survive looming natural and manmade disasters. When I was pregnant with Emily it was the first baby of the bunch. We all met in Palm Springs and rested our hands on my belly feeling Emily move around. There's a special love and support that comes from being with people who have known you for years, will stay up at night with your baby, come to your daughter's ballet recital, can laugh over embarrassing moments and will order two desserts with you - one for now and the other for the next day of course.

 

Kim and I met on the curb of LAX and made it to the gate easily. The flight went well and we met Diana at Chicago Midway. When they crouched on either side of her to snap a picture Marian swung her head and eyes back and forth with a huge smile, I think she knew this was pretty cool. 

 

 

 

Good friends aside, Marian was coughing a lot on Sunday from another cold which was nerve-wracking. They can't give anesthesia if she were to have a fever, vomiting, bad cough, etc. We all made it to the hotel and bunked for the night. Around 2 am Marian started coughing loudly off and on from about 2 am to 6:30 a.m. I didn't want to wake her and bring her into a steamy shower because she wasn't allowed to eat for the anesthesia, and she's been an eating machine lately and I knew she would want to. At 3:30 a.m. I picked her up and held her in bed so she could be more upright. This worked pretty well but when I put her back down at 4 a.m. the coughing started again, a little better at least. We were four tired girls when we woke up at 7:30 a.m. 

 

Ok, so I'm not really sure how this happened but we connected with a team who are following Marian to make a NPC awareness campaign/video. They live all over the country but the main person, Dave, lives in Northern California and flew to Chicago to follow Marian's treatment there. They are not only donating their talent, time, services and inspiring energy, but they also went into dad mode Monday as volunteer sherpas lugging the strollers, purses, diaper bags, toys, blankets, bottles, food that it takes to get through a day at the hospital. They are amazing. Dave and Adam met us at our hotel room and we all traveled to the hospital together to check in. 

 

I've said it before but Rush Hospital is seriously amazing. Everyone there is so kind, talented and helpful. As I was registering Marian for anesthesia I got a message that Marian needed to have a hearing test done to get a new baseline because her dose is being raised. We trekked over to the audiology building where I held Marian on my lap in a small room as sounds came out of speakers on either side of us with light up toys. Every time Marian looked in the right direction a toy with lights with come to life on top of the speaker for a few seconds, when it would go off Marian said, "uh ohhhhhhh." Marian got an A+ on the hearing test which is great news for her hearing and also because she can hopefully avoid having to do the more invasive sedated hearing test in the future.

 

One thing that was sobering is in reviewing the results the audiologist went over the hearing loss we can expect Marian to experience. I had thought "high frequency hearing loss" would be things at a higher pitch, like Mickey Mouse's voice. They're actually more like "high frequency sounds," the letters S, T, H and F will be lost for Marian. Some kids lose the ability to hear those sounds after one treatment, others after several. There's another collection of letters that may also be lost, but not definitely. Luckily, there are hearing aids that can help and even cochlear implants if needed. So far no child has lost all hearing, which is actually better than expected as in animal studies the animals went completely deaf. Hopefully Marian will hold on to her hearing long enough to build her speech and language comprehension. Even going along the best path possible there are many obstacles ahead. It's hard to know what to visualize while still being optimistic but realistic. 

 

When we finished we headed back to the main hospital for the treatment. Marian was passed to the anesthesiologist for treatment and I waited in the waiting room with my friends handling paperwork and getting updates about the process of transferring her treatment to CA - we'll still go to Rush every six months to be followed after the official transfer. A few minutes later the treatment was over and I was able to see Marian. 

 

Here she is, this is real and what she experiences to have the same chance at life as everyone else:

 

 

When I walked back into the room one of the anesthesiologist was cradling Marian's head with one hand and was holding her hand with with other hand. Someone lovingly covered her with her little blanket that brings her comfort. Doctors and nurses are heroes. It wasn't until we left the recovery area that I realized one of my friends was crying a little bit. I haven't cried yet at the hospital. I'm sure that I will and I feel like I probably should cry more than I do. She is so sweet, gentle and innocent. She loves her life so much and I hope she can hold onto it. We are deeply grateful to everyone who is giving her that chance. 

 

 

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