A Grateful EB Mom

The word of the day might as well be ‘awareness’. Not only Nicky’s book was featured on a story on FoxPhilly, but a good friend told me how anytime he buys EB eggs he thinks of me! That was too funny.

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Nicky and Connor at Camp

At any rate…  we got back from Camp Wonder  this past Saturday afternoon and the boys can’t stop talking about it. It was magical as always. To have a Camp sponsored by companies such as Cetaphil that enhances the lives of children in great pain every day, it’s beyond humbling. The Children Skin Disease foundation is doing amazing things and I will forever be grateful to the Tenconis, especially Francesca, who make it happen every year. THANK YOU!

As a mother, to have a place for me to leave Nicky and know that not only he’s going to be taken care of, but have fun, when I can’t leave him in anyone else’s care during the year, it means a lot. This is why the other moms and I are able to take little excursions during the week and have the ‘me’ time we rarely if ever have. We talk, sightsee, take our time… I can never really “take my time” when I go anywhere unless I know my husband is at home to make sure Nicky is OK. I can’t really leave Nicky alone more than a few hours at a time. He can’t walk or even do simple things like open the fridge or go to the bathroom. Yet, his sense of humor always leaves me chuckling. He told me on the car on the way home that another camper told him that EBers don’t live longer than 18 years. Nicky is going to be 18 in November. Do you want to know what he told him? “You’re wrong, Bit$#”. Bah ha ha. Nicky does not ever cuss, so this was just hilarious!

Now that we’re home all of a sudden his throat is 100% worse so he told me he really needs a throat dilatation… I started working on getting the referral, the last one was almost 3 years ago so that’s awesome that the last one lasted this long. I will write a more detailed blog on Caringbridge soon with all the details. We also received the DNA results which will tell us if he’s eligible for the skin graft trials at Stanford once he turns 18, I will wait to talk to Dr. Lane to figure it all out before I post that update.

Since the story aired a lot have commented how Nicky does not look 17 and looks maybe 12. When Gina asked me why I had to do a double take because I knew, yet I didn’t know how to explain it. The bottom line is that his body requires a LOT of calories. Even though he’s tube-fed and gets about 2000 calories or more every night, that’s not enough. The nutritionist wants me to give him 5 cans a night at 500 calories a piece, but as it is I have a hard time getting 4 in at 100ml per hour. Recently we also sadly figured that the reason why Nicky was having all the stomach problems that he has was because the Nutren 2.0 had High Fructose Corn Syrup rather than sugar. When we briefly switched back to the Nutren 1.5 his problems disappeared. That’s 500 calories LESS calories per day though. Ugh. What are we to do? What is the less of two evils? We might start combine or switch back and forth. He has a big tummy and being heavy makes it worse for him to move around, but the reason why he still looks 12 is mostly because he hasn’t gone through puberty yet. He has no hair anywhere, his voice hasn’t really changed. Is that a bad thing? It’s all relative I guess. I was bombarded when I mentioned the fact that he would most likely not get married the way he is now, without a cure. EB patients that are not nearly as severe as he is called me all kinds of vile names. I was not talking about them. I was talking about my son. My son knows what his limitations are, he has accepted the fact that as it is, many things are out of reach. I asked him what he would do if he was EB free for 1 single day. His #1 wish? That he could EAT. Eating is a big wish in his book. If that does not explain what we’re dealing with here, I don’t know what does.

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Vintage Silvia… I must get this shirt.

Finally… oy. It’s a big birthday for me in a couple of days. I will hit the half-century mark. It’s weird how I felt much worse turning 30 than I do turning 50. I think part of it is the fact that two of my closest friends died in their 30s. My childhood friend Paola died of a brain tumor when she was 38, leaving her 2.5 year old little girl behind which took her 10 years and 3 IVFs to conceive. Life is just cruel sometimes. My former boss and amazing friend Darren died from complications of his HIV diagnose also at 38. That old saying that goes… “Don’t regret growing older, it is a privilege denied to many” comes to mind. It is what it is. Aging is out of our hands, I will never hide my age. I am good with turning 50. Hear me roar! I am still a work in progress and I have work to do. I want to see Nicky be cured because I refuse to give up hope. I had a long conversation with Nicky a few months ago and asked him how he felt about his life. I made sure he knew I was in his corner no matter what. I wanted him to know that if he “hung in there” I would as well, but if one day he decided that ‘enough is enough’, as heartbreaking as that would be, I would respect his wishes. He told me flat out that as long as I was there to take care of him, he would have hope.

So, if you have a minute, please say a silent prayer not only for Nicky, but for all EB kids and adults out there who live daily with pain and please spread the word if you can.

Much love and blessings,

smalldolly1

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