Friday, December 6, 2013

December 26th

Once upon a time Lu couldn't drink my milk. I've mentioned this before and have talked about how I felt like it was just the worst thing that was ever going to happen to us. Well, this week I scheduled the surgery to have Lucy's feeding tube placed. And this is still not the worst thing that could ever happen to us, it is just overwhelming and sad. It makes me feel like no matter how hard we fight, and work, and adapt, Rett Syndrome still just kicks our asses. We have done everything the swallowing specialist recommended in her report last year, and her mouth just still doesn't work for her most of the time. 

The GI doctor we see in New York talked with me on the phone two Fridays ago and we went over everything and he agreed it was time for this to happen. I had kept a log for him of her weight and what she choked on and when, and based on that and talking with me, and being a part of the Rett Clinic, he felt comfortable making this decision. He said we needed to have an Upper GI series done beforehand. This is a routine measure just to make sure anatomically everything will be fine. He said we could have it done locally, but when I contacted the pediatrician to help me set it up, he scheduled an appointment with a local pediatric GI doctor for a second January! I said, ummm, no. I wasn't asking for a second opinion and we are not going to that appointment. So Lu will have the upper GI on December 26th at 10:00am and then the tube placement the next day. We will stay for at least 24 hours so she can get lots of antibiotics and they can make sure everything is okay. 

In regard to the local doctor thinking we need a second opinion: I always feel like they, the doctors, think I am acting like a crazy loon and over-reacting about everything. Well hey, let's fart around a few more months and maybe Lu can lose a few more pounds, so that we have to work extra hard to get her weight back on, and her health can get a little worse, and then they can come to the same conclusion. But Geisinger's motto should be, "Hey, we like to fart around with your health." When I responded to the email, I said that I trust the doctor who sees girls with Rett Syndrome EVERYDAY, and HE trusts ME and my judgement. I am very seldom made to feel by any local doctors that my judgement and observations matter or are to be trusted. I'm sure there are still lots and lots of things that I don't know about Rett Syndrome...I'm not Dr. Sasha after all...but I can feel certain that I know a whole hell of a lot more about it than Lucy's pediatrician, or ortho doctor, or the GI we saw last year! From day one, I have immersed myself in learning what it is all about. I may have said this before, but I will say it again, I think of it like keeping my friends close, and my enemies closer. Rett Syndrome is my enemy and I have to know everything I possibly can about it to help me fight it. I have to know what could be coming down the pike. 

Unfortunately, because I make myself learn and know so much, and because I am the person who interacts the most with the outside world regarding Lucy, I am CONSTANTLY feeling like I have to defend what I know to be true, because what is true is just too much for people to want to accept sometimes. And then all over again I feel like people think I am over-reacting, jumping to conclusions, being a loon.  And I have felt like this since we first started seeing concerns with Lucy's development, back before she was even a year old, because as I have said, I knew in my gut that the hypotonia was not just going to go away, and that their was an underlying cause for its existence.  At that time, it was early in and everybody, including the doctors it seemed, wanted to kind of act like it was nothing and that I was being a worry wart. Now that Lucy's in school I have a whole new group of people to educate and promote awareness with, and I just always feel like I am telling somebody how I want them to do something. 

Out of all of this grief, worry, strain, stress, and frustration, I still have been able to find a silver lining when it comes to the specific topic of advocating for Lucy. I would say that throughout life I have been somewhat of a "people pleaser" in that I always wanted to be liked and to make people happy. I was not a pleaser in the form of changing myself to please others, however. In the past year and a half, I have found the strength and confidence, and inner calm, to not give a crap about what others think when it comes to fighting for Lu. I still always care about people's feelings, I still try my very best to be polite, calm, and reasonable, but I know how to be the squeaky wheel now. I know how to gather data, take my time, collect my thoughts, and make my case heard loud and clear. I know how to speak up over and over again to whoever I need to, regardless of how annoying I feel I am being. I hate doing it. It is exhausting to be that squeak. But while I hate it, it is also liberating. If it's for Lu, I am like a quiet little bulldozer, with blinders on, focused only on what she needs, seldom worrying about what others might be thinking about me. 

I just read an article about behaviors that mentally strong people avoid. Number five here helped me come to the realization of what I said above. People never know how strong they can be until they are made to be, and then in the face of some situations, you can become even stronger. 

"5. Worry About Pleasing Others. Know any people pleasers? Or, conversely, people who go out of their way to dis-please others as a way of reinforcing an image of strength? Neither position is a good one. A mentally strong person strives to be kind and fair and to please others where appropriate, but is unafraid to speak up. They are able to withstand the possibility that someone will get upset and will navigate the situation, wherever possible, with grace."

It takes us a good hour each morning to "eat breakfast". Lu has a bottle of Pediasure when she first wakes up, then usually takes a little nap, and then we go to the table for medicine and something to eat. Breakfast is pretty much her worst meal of the day. In this picture is a jar of baby food, some flan from Cozy Shack, and Lucy's favorite tiny graham cracker squares. She barely ate any of anything and I have to give her the medicines little by little throughout the meal so that she doesn't gag on them and throw up anything I have managed to get into her. 

So...the thought of a feeding tube makes everyone sad, makes them want to find little slivers of reason to not get it, and makes them want to look for minuscule rays of hope. And I have to say I don't care about how sad it makes others. I don't care if family, friends, strangers, or local doctors don't think it's the right decision, because I know it is. I am the one who sits for hours and hours each day trying to coax food into my daughter's mouth. I only have enough strength to worry about how me and Chad, and Lucy feel. I only have enough strength to do what is best for Lu and stand by our decision. 


  1. I don't know why anyone would intentionally make you feel like you have to defend your decision. Obviously Lucy needs to get more nutrition into her body, and it's not happening the conventional way....whatever it takes to get her healthier and stronger, then that's what you do! Parents know their children better than anyone else on Earth and you especially have an especially close bond with Lucy-you know what is best for her. I am glad that you have found your inner bulldozer. I know it's hard to do that. <3

  2. "Inner bulldozer"!!!! I like that!