Friday, January 31, 2014

Getting Back on Track

 Well, today begins Lucy's fourth vomit-free day. She did not have a day for about a week and a half where she didn't throw up at least one feed, but she has kept everything down for the past three days, and is doing well so far this morning. It was completely exhausting for all of us. Her especially because not only is it exhausting to throw up, but she was not getting anywhere near the number of calories that she needs, so she had decreased energy again.

On Tuesday, she really started perking up and I wanted to share the things that she said to me throughout the day. I added a button to her Tobii for her to say she wants to use her paper book, which she hasn't used in quite awhile. Much to my surprise, she requests it often. But really, I guess I shouldn't be too surprised; when she was more able to use it before, she loved it very much. So anyway, on Tuesday morning she said she wanted to use her book, and she was a little upset, and she said, "I want (do an activity), want, hug, it's about now." Translation, if needed: she wanted a hug right now!

Later, we were playing baby dolls, and here are the things she said on her Tobii, with the PODD version she has on there:

"I, dress, put on, doll, brush hair."  "Beautiful"
"Bed, hugs and kisses, teddy bear, sing/song, crib, goodnight"

And here she is giving hugs and kisses to the dollie she chose to play with, thirty year old Loraine Loren who was mine when I was litte. 

I have pictures of all of her doll babies on her Tobii so she can choose who to play with and then through the PODD she first said she wanted to change her diaper, and then dress her, and then put her to bed. She also chose that night gown that Loraine is wearing. 

Later in the day we were sharing a snack of mini Oreos which Lu has discovered she loves, and she said with her Tobii: "we, our, like, favorite, good". 

We also have a great set of books by Eric Carle for learning to match words with pictures and we have started working on just two words a day.  The book pages are split in the middle so we can match the words with the picture:

After practicing them a few times, we have been making some kind of little picture or poster to reinforce the word. After we had done four words I made a little "game" on her Tobii with the actual pictures that she made and gave her two word choices below the picture so she could practice matching the correct word to the picture on her own, and she has matched all four correctly at one time or another! Here is a picture of one of the game pages:

One night at supper, after showing her Daddy how she can read words, she said she wanted to use her book, and she proceeded to say, "I think it's, you, fun, not school"! I asked her if she meant that she likes doing school things at home with me better than going to school and she emphatically nodded yes! (Music to my ears!) And then yesterday during speech, she told her therapist, Roxann, that she wanted to use her book, and she said, "Use the bathroom, sit, pee" and I took her in to the potty and she peed! 

I'll tell you what...I hate that feeding tube, the actual physical presence of it, I mean. It makes me nervous, and the hole into her belly totally freaks me out. It is healing fine, but still really grosses me out as it is kind of gunky and you know, just a hole directly into her belly! We had to already put silver nitrate on a piece of granulation tissue to cauterize it, and that was a little terrifying. A few weekends ago we packed up all of the supplies for a day of visiting our family in DuBois, and I cried half the way there because it is just so much stuff, on top of all of the stuff we already were used to bringing along with us. And it makes me nervous to be away from home with her because we have a routine here at home and everything we need is here. And last weekend, Lu had a feeding at Mom's while I had lunch with a friend and Chad just had some down time at home, and after I dropped everything off at Mom's, I cried again.  BUT, even though I hate it, I really do also love it because it is making Lu's life amazingly better, and anything that does that will have an uncontested spot in our lives. 

Thursday, January 23, 2014

Waving the White Flag

The Germ
A mighty creature is the germ,
Though smaller than a pachyderm.
His customary dwelling place
Is deep within the human race.
His childish pride he often pleases
By giving people strange diseases.
Do you, my poppet, feel infirm?
You probably contain a germ.
       -Ogden Nash

Lu went back to school last week for the first time since Christmas break. Inevitably she got a little tiny cold that produced an indescribable amount of snot that has been making her throw her feeds up off and on since Sunday. She has no other symptoms, seems fine, but is so congested that it seems her belly is fully of mucous and makes her throw up when we put milk on top of it. I took the above picture on Monday. Her hair is all pulled back to avoid it getting soaked in puke, and in the picture you can see one of the two towels I had her swaddled in. She looks a little paler than she has been looking on her new diet of sufficient calories and nutrition. We have not left the house all week because A.) It's freezing outside, but B.) it is taking over two hours for each feed so she doesn't throw up and then time afterward to let her belly settle. 

Lucy has been sick more in the past 5 months than she has been in her whole life total.  It has felt like we spend most of the time just trying to get her well again from whatever germ she picked up at school. I know that kids get sick a lot when they first start school, but I believe since Lu has not been able to get all of the calories she needs, it has made her even more susceptible to every single stinking germ that comes her way. So, after much discussion and weighing of the pros and cons, Chad and I are throwing in the towel on school. We are waving the white flag, laying down our arms, and admitting defeat.  The germs have won. Our hope is that by gaining some weight, and having months of proper nutrition under her belt, Lu might be able to combat at least some of the germs she would encounter at school, and we can make another go of it in the fall.

When Lucy started throwing up last weekend, Chad commented it was obviously because she went to school that week and got a bug. I told him I was basically waiting for him to give the word that it was time to give up on school because honestly, I had decided in my heart, long ago, what I felt about school at this point. However, most of my reasons are far from the most logical. The main one being, I just like Lu to be home with me. I also wasn't 100% sure that she was ready for school, once we actually started. Other than the constant illness, my reasons for wanting her to stop going were more emotional, and not necessarily the most reasonable. So, as is often the case, I was just waiting for Chad to make a logical decision, because I would know that it really was time if he said so. Lu loved her friends at school and the kids loved Lu, and I hate to take that away from her. However, she is only three. She has her whole life to make friends and "socialize".  I'd rather she miss her friends and not get pneumonia than the other way around. 

So, on the heels of one big decision, the feeding tube, now we have made another one; no more school for Lu right now. It was hard. Her team of therapists and teachers have worked so diligently to try and make school work for her and we appreciate it so much. But, I am looking forward to keeping Lucy healthy, and happy, and whole, right here at home.

Wednesday, January 22, 2014

The Forest and the Trees

I have discovered over the past few months, a method for coping with how overwhelming Rett Syndrome can be, that seems to be working. I really have to think my Mom and Chad for helping me to develop the method. Sometimes it seems like maybe a daughter marries a man like her father, or a son marries a woman like his mom, but I married a man that is very much like my mom. Chad and Mom are generally in a hurry...I am almost never in a hurry. Mom and Chad like to be able to be in control of things most of the time. I can't speak for Mom because we haven't discussed it much, but Chad and I have talked a lot about how he really likes to know exactly how everything in life is going to go, so he can be prepared. That, however, seldom works out for him. So, I have noticed that often Chad and Mom tend to focus on any small thing that they can fix so at least they might have control over that one thing. Don't get me wrong, I am not saying it is a bad way or wrong way to be. It helps them to cope and that's what matters.

However, one day Chad was worrying about some thing that wasn't especially crucial to getting through our day, and I did a little impersonation (that he enjoyed) of him letting all of the passing trees smack him in the face instead of keeping his eye on the forest. He did laugh and agreed that he lets that happen sometimes, but I also understand that is how he tries to deal. Not many days later my Mom came in the house and exclaimed that she couldn't understand how I could leave kitchen cupboards hanging open. It drives her crazy if her cupboards are open. I replayed the forest and trees impersonation for her also. But, I understand that when life in general might seem out of her control, at least Mom can make sure her cupboards are shut properly, and that helps her.

These two interactions have helped me develop a new way of sorting out what I need to worry about in a day. Some examples of TREES might include: laundry, dishes, cleaning, worrying about my appearance too much, making sure the kitchen cupboards are closed, making sure the house is immaculate (which it never is), etc. 

And here is the FOREST:

And here:

And here:

Chad and I have been working on improving our health. In June my insulin level was 76.6. It should be between 3 and 17. I started exercising, list some weight, and we have been eating better, for the most part, and I just had it retested and it is 11.9 now! Chad has lost at least 21 pounds in the past year. Being healthy is part of the forest because we absolutely need to be able to do a lot of hard work to continue taking care of Lu. We also make sure we get a date together at least once a month for some time alone and to regroup. Maintaining our sanity is part of the Forest.

 The Forest is just all that is involved in making sure Lu is at her healthiest and happiest. If something does not directly contribute to that, then it is just a tree, and we can get to it later, if at all. I would never begrudge Mom and Chad their coping skills, but what I have found is that if I can sort things out between Trees and the Forest, then I can remain more calm, and get less overwhelmed throughout the day. If something is a tree, I just categorize it as such and move on. It has been liberating!

Tuesday, January 21, 2014

Mothering articles

Below are links to other blog posts I have had the pleasure of being invited to contribute to the online community of Mothering. This site used to also be an actual magazine that I received in the mail, and then it became an online only resource and community.  One day they were asking for bloggers to join their team and I expressed interest and they invited me to join, which was pretty flattering to me. I have a link on the side of my blog to the Mothering website, but it occurred to me that it was probably a pain to find the ones by me, so here they are:

Wednesday, January 15, 2014

Looking Good

Lucy's new feeding tube is looking good in more ways than one!
(That is not milk running down the side of her belly in the picture, but as I look at it, it kind of looks like that, but it's not!)

Instead of using disposable "drainage sponges" every day that I have to cut and use tape with, I ordered Lu a batch of adorable reusable covers that we just wash and use over and over. I bought these from a store on Etsy called Feedie Friends ( She had many options of sets of similar patterns, but she also had listings for choosing your own fabric, like a custom order, so here is what I chose for Lu:

It was fun to choose things that she loves, so at least there can be one little fun part about the process of "eating" with her feeding tube. We also travelled back to the Bronx on Monday for a follow up appointment with Dr. Loizides, her GI doctor. He said everything looked great. When Lu checked in at the hospital the day before the surgery, she weighed in at 28 pounds 9 oz. Monday (and for a few days before) she weighed a little over 31 pounds! That puts her in the 30th percentile! Chad and I have been noticing a big difference in her over these first two weeks, just from having enough nourishment in her consistently. She has been more vocal and has been saying, "Dad" a lot the past few days, with her voice. She is more alert, less irritable, and laughing and giggling a lot more!

Back in November my sister and my Mom organized a spaghetti dinner for Lu. Our main goal was to raise money to build a ramp for the house, but the money that was raised will also be so incredibly helpful as there is just always something Lu needs, or somewhere we need to go. It is such a relief to know we just have some extra money set aside for say, when we need to spend three days in the hospital in NY and then drive back two weeks later. So, we are so thankful to everyone who was involved as the financial part has at least been less stressful for us as we have been trying to figure out this new aspect to Lu's care. 

So here again is the picture from  January 1st,

And here is a picture from January 12. It is a very small difference, but Chad and I definitely feel her cheeks might be a teeny bit fuller. For the first two years of her life, Lu was always so plump and healthy looking, but in the past 6-8 months she has become increasingly fragile looking, and it makes us so happy to see a little bit of her old self coming back. 

Tuesday, January 7, 2014

Back to the "grind"

Chad really did go back to the grind today, obviously meaning work. Lu and I hardly have a grind to contend with, however. This was our first day on our own in over two weeks, and while we missed Chad, we had a pretty nice day. She is on the fifth day of not throwing any of her feeds up, and she is enjoying some food by mouth here and there. We had an especially enthusiastic and peaceful snack of Lebanon bologna and cream cheese this afternoon. So, she's doing great!

We finally did a little project that I pinned on Pinterest some time ago where we made birdseed cakes to hang out for the birds.  ( I have been especially wanting to do this because we have a nice round chair that we can sit in in front of the picture window in the living room and bird watch.  Due to the rockiness of out current yard situation, we weren't able to get any of our shepherd's hooks into the ground before it froze, so I improvised and created a bird treat jungle gym. 

Here's Lu while we were making the cakes. Her job was to smash it down smooth once it was all in the molds. We had to do hand over hand of course, but she did a great job and was all smiles the whole time. Take note that while we were having such a fun time making bird treats, she was also eating! It pretty much rocks. 

And here is the finished treat stand:

We also talked mostly about cardinals throughout the day as they are the most obvious winter feeder birds, I think. We looked them up in some nature guides, and then used a pretty Christmas card that had a pair of cardinals on the front as a reference for coloring a picture of cardinals in a backyard bird coloring book that Lu has. 

And here is just a picture of her enjoying being home and playing with her toys:

It was just a nice and quiet day after all of the stress and hullabaloo of the past few weeks.

Saturday, January 4, 2014


So, Lucy has kept all four of her feeds down for two days in a row so far. For the first days, she kept throwing up at least one whole feed which is an 8 oz box of formula, but after tweaking it, and getting tips from the home nurse who has been visiting since we got home, we have figured out how to get everything in her without it coming back out. It is still very time-consuming, but should get better and quicker as her belly adjusts to being full again. She seems okay with it all. She just takes it in stride, just like everything else that has happened to her so far in her short little life. Here is Lu demonstrating business as usual, having her regular early morning nap, just with a feeding pump pumping formula into her stomach:

Lu has been having a little bit to eat by mouth each day too, just not too much on top of her formula because that would probably be too much at this point. It's basically going fine, I just have fluctuated through many feelings over the past week. The most common one being rage over the fact that Lu has to put up with this. But I also have experienced quite a bit of anxiety just over the medicalness of it all. 

At the addition of each new piece of equipment, therapy, adaptive device, etc., I tend to also take it in stride, but I had a very difficult time this summer when I started puréeing her food. I have always had more of an emotional/ obsessive reaction to Lu's eating because it just has never really gone too smoothly and I have always been trying to be in control of it, while never actually achieving control.  "Medical" stuff kinda freaks me out. I have given people enemas, cathed people, and even once changed a man's iliostomy bag that was leaking, but if have never felt comfortable with things that have a more medical nature to them. But I am doing ok. Chad has been the real champion and leader of this whole thing. He has some sort of inexplicable confidence about it all and just dove in when we were at the hospital and were learning what to do. I have told him how awesome he has been through this all, over and over. We make a good team that is for sure. 

Here is a picture of Lu from New Year's Day:

I want to keep a picture log to compare how she looks as she hopefully gains some weight so we can visually measure her progress, in addition to just weighing her of course. So, here she is on the first day of the new year. 

We are looking forward to improved health, weight gain, and more energy!