Saturday, December 28, 2013


I Things are still going very well. Lu had a good night of sleep, and she is on her second "bolus" feeding which means a larger amount all at one time, like a meal. She has been tolerating everything very well, and I actually gave this last feed to her, so we are learning what we need to do. And then it took the nurse awhile to come when her feeding was over, so Chad and I just went ahead and finished it up all by ourselves and we did it right with any trouble at all. The nurse has been impressed I think.

I said to Chad this morning that even though it sounds crazy, when I'm looking at this contraption that is feeding my baby through a tube directly into her belly, it still looks easier to me than what we currently do. I think that I have said that Lu will still be able to eat whatever she wants by mouth, it just won't matter HOW much she eats by mouth because she will get the full amount of calories she needs through the feeding tube. So, anything she eats by mouth is just bonus! It will be good. She is napping now and has been such a big, brave girl throughout this whole process. I felt bad that I didn't add any pics of her and Daddy yesterday so here is one:

And here is the big girl relaxing in her crib after a nice lunch and a big poop:

And here are her adorable legs just being adorable:

Hopefully we will be home tomorrow sometime! 

Friday, December 27, 2013

Pre-op and post-op

Lu's upper GI was fine yesterday. She cried at the end and then cried for a half hour afterward, but she had a good nights sleep. Her IV went in easily which was a relief. The first time she had an IV at Danville they jabbed her for an hour before getting it in without it collapsing or whatever happens. 

Here's what the first 2/3 of our trip looked like yesterday morning:

Chad drove of course, and it was my job to just try and get as much food and water in Lu before 6:30, so I tried to not pay attention to the terror that was interstate 80. It eventually stopped completely, I guess we got ahead of the storm, and then we were fine.  Here is Lu being the big pile of awesome that she is, just enjoying the ride:

We had Lu ready to go down for surgery by 7 this morning and here we are waiting for "transport" (and  reading a great Berenstain Bears book about the importance of not being racist):

And here we are in the recovery room:

She had a few rough periods while waiting for the pain medication to start working, but other than that, she had a pretty decent day. Formula has been going into her g-tube for almost two hours now do it will slowly go in until 4:00am. They will work her up to her target amount to take at one time throughout the day tomorrow and as long as she tolerates it well, we will likely be able to go home on Sunday. We will have a nurse come to the house for awhile to help with it and to make sure everything is going ok also. I think the scariest parts are over and now we just have to wait for Lu to regain her plump and healthy body. I probably have a lot more thoughts to share, but I just want to lay down and rest and I just wanted any faithful Lucy fans to know that she is doing well and everything went smoothly. 
Thanks for caring! 

Tuesday, December 24, 2013

A mind of her own

This is Lucy's "new" dollie. I rescued her from Goodwill a few weeks ago and cleaned her all up, and even crocheted her up a few new frocks as she was scandalously nude, laying there dejectedly at the Goodwill. When Lu and I play babies, she often says, "brush hair" with her Tobii, but she didn't have a doll whose hair could be brushed very well and I had been looking for one for her. This little lady seems to have had an unfortunate experience with a "hairdresser" and has had a bit of a haircut, but it is easy for Lu to brush, and fortunately, always seems to need it. My favorite part about this new dollie, however, is her name. I, uncharacteristically, named her Babette without consulting Lucy at all. After Lu had Babette for about a week, I asked her if she liked her dollie's name to be Babette, and she said, "No". I said, mostly to myself, "How can we figure out how Lu can tell me what she wants this baby's name to be?" And then Lucy navigated to the first page of her PODD on her Tobii and said, "My name is Lucy" and then I said, "Do you want your baby's name to be Lucy too?" And she navigated to the yes/no page and said, "Yes!" So Babette became Baby Lucy. 

Both of those pictures above were done on Lu's Tobii, using her eyes! On the page I have made for her circle time at school there is a button that says, "Illustrator" because when they read books the teacher always asks questions about the parts of the book, including what is on the title page. Well, one day at lunch Lu went to this page and said "Illustrator" several times.  I asked her if she wanted to be an illustrator and she went to the first page of her PODD and said, "Me". Then a few minutes later she went back to illustrator again and said it a few more times and when I asked again if she wanted to be an illustrator she said, "I do"!!! It was so awesome. 

So, I went on a mission to figure out how Lu could do a little drawing on her Tobii. With the help of the Tobii rep for our area, Mary, that helped us get the Tobii in the first place, I figured out how to set up the Tobii so Lu can control the mouse. Then she sent me two programs through Dropbox and told me about a few websites. The first picture is from It is really easy; Lu just uses her eyes to make the lines, and then to change the color you just left click the mouse and a new random color is generated, which is fun because then Lu gets to see all different colors and shades with little effort.  Sometimes she can figure out how to change the color by herself with her eyes, but I don't know how she does it! And the second picture is a program Mary shared with me that has limited colors, but they are fun and easy and it can play music while she draws too.  I added a way for Lu to tell me when she wants to paint and which program she wants to use. It's all a great way for her to be learning how to control the mouse with her eyes so that she will continue to improve.  There are actual adult artists that use the Tobii to create very elaborate artwork, so there is no reason Lu couldn't do the same, and I told her so. 

We talk about what jobs she could or could probably not have when she is grown up, when they come up in conversation. Another occupation we have talked about is being an engineer because Lu seems to be fascinated with bridges. She often goes to a page in her PODD with the word/picture of a bridge and she will activate it over and over again. I asked her if she wanted to read some books about bridges  and she said "yes", and we did and she loved them! I told her that she could use a Tobii and her eyes to design bridges someday. I said she wouldn't be able to actually "build" the bridges herself, or be a bridge painter, but she could definitely design them and then other people could build them. 

I cannot, and will probably never be able to say enough about how essential I believe the Tobii is to improving Lu's quality of life. Sometimes a day goes by where she doesn't say much, and then she tells me that she wants to be an illustrator and that she wants her baby doll to be named after her! I wish every person with complex communication needs who cannot speak or use their hands was just automatically given a Tobii. And I know there are many other visual communication languages like the PODD, but it's the one we know and it's the one that first opened Lu's door to communicating with us, so I have a bit of a soft spot for it. 

I guess in the face of Lu's upcoming procedures, maybe it is important for me to try and just remember how the feeding tube will also greatly improve her quality of life. Who knows what we will do in a day when we don't have to spend it in frustration and tedium trying to get nutrients into her. I'll tell you what we will do, all kinds of super fun stuff! It's funny the stigmas that do and do not pertain to different things, ie: people shy away from medication for mental conditions such as anxiety and depression, but will unhesitatingly take a pill for their heart, thyroid, headache, etc. Lu's Tobii is much more of an obvious and cumbersome piece of equipment that we lug EVERYWHERE with us, than her tiny little tube will be hidden under her shirt, but the look of devastation on peoples faces when they hear she needs one is so obvious, in comparison to the look of interest and enthusiasm for the acquisition of her Tobii. I get it though. However, I look forward to seeing her gain weight back, get some color back, and not need as many little rests throughout the days, as much as I looked forward to communicating with her.  She is pale, and tiny, and takes several little naps a day. She caught a stomach bug on the last day of school before Christmas break and then shared it with me. That is the fifth time she has been sick since the beginning of the school year!  I am looking forward to being able to fill up her belly so we can go somewhere and do something fun, without worrying about how and where she will be able to get a snack in a little bit. Here is one of my all time favorite quotes:

"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next." 
 -Gilda Radner

I will have plenty of time to share how the procedures have gone, I am sure, while Lu recovers.  hope everyone has a happy holiday of their choosing! 

Tuesday, December 17, 2013

Just some little tidbits...

Lu can't just sit in a chair in the living room and watch her cartoons because there is no support and she easily falls over. She does sit in our regular chairs sometimes, but they are not ideal for her times of relaxing. We had been using a Big Joe chair for her since the summer but the beans in it flatten so quickly and after refilling it once (for $25) and it smoothing out again within a month, I sought out a more durable solution. There are now bean bag-type chairs that are filled with shredded furniture foam. We ordered one from a company called Comfy Sack and they have a huge variety of fabrics to choose from to match your regular furniture. There was also a chair called the Chillout Chair that is a "special needs" product that would also have been awesome, maybe moreso, but since it is "special needs" it was like $1200 compared to $270 for the sack. So here are some pics of Lu enjoying her new sweet chair:

Here is a picture I sent to Chad at work the other day:

Lu ate an entire jar of baby food peas. This made us so sad, but so glad at the same time. She hasn't finished a container of anything in months. She used to eat whole cups of pudding, yogurt, applesauce, etc. and she barely even eats them at all anymore. She used to love baby food peas and I guess she still does. 

I also sent this picture to Chad at work and asked where this big girl came from! Sheesh, how can she not be a baby anymore?

And finally, I took this while driving to pt yesterday...I know dangerous, stupid, yada...but she looked so beautiful I just had to:

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.