I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Tuesday, February 24, 2009

Therapies and Zach...

Yesterday was our last Speech Therapy appointment with Beth at Physio Therapy, but I am THRILLED to report that Beth is going to be working PRN at Children's Hospital and we get to KEEP her as Alex's ST!!! YEAH! I can't imagine therapy without Beth, I know Alex truly connects with her and even though we will be on an every other week rotation, I'm just happy we'll still have her - so at this point we will take what we can get! I started making Alex's blenderized food this week and she LOVES it. Basically I'm having to start introducing foods like you would to an infant to make sure she doesn't have any food allergies, so this week is waffles and fruit. I blenderize two waffles, two tablespoons of butter, 1/4 cup of syrup and a can of mixed fruit - it really smells awesome (Aaron even asked if he could taste it!) and Alex really likes it (compared to baby food though, that doesn't seem to hard to fathom, does it?!?)

Alex has been sleeping TERRIBLE the last two weeks (in spite of the fact that she gets a half a sleeping pill every night). I don't know if she's coming down with something or if it's her teeth. She's lost TEN teeth already and she has three permanent teeth that are working their way in right now. Last night she was up at 2, 3:30, 4:00, and 5:30. Not crying though, but screaming and laughing...I really think she's cognitively realizing that if I'm really loud, someone will come see me. I tried not to go in her room because I don't want to condone that kind of behavior! But when she realized the yelling and screaming wasn't working, she starting banging her leg into the side of her bed until I finally went in...and when I do, she giggles and laughs at me like, well it took you long enough! Because of the lack of sleep, and only a 45 minute nap at school I thought Physical Therapy was going to be a nightmare today - but she did awesome! Shannon had her on all fours and for the first time in her life, she was in a crawling position. Shannon facilitated her legs while Sandra helped with her arms and I will tell you that they were both physically sweating (Sandra has her own story to tell)! After that they put her in what I can only describe as a forward facing walker and she took steps and really did great!

Zach doesn't really get much blog time, but I have to post these pictures of him. Later in life he is surely going to hate that his mother loves to take pictures! But he is truly a character. He is my total joy, and is such comic relief around here. He LOVES to dress up, and he loves to emulate whatever he's doing. If he's watching a Thomas DVD, he has to have all his trains - dinosaur movie, all his dinosaurs, Toy Story, his Buzz Light Year and Woody, etc. The other day we went on our "date" (but he insisted I didn't tell people it was a date...seriously, at four he's already embarrassed to be on a date with his mom!) We went to an inflatable jumping arena, out to lunch, went out for ice cream and then went to Target. At Target he found a Mickie Mouse Three Musketeer move that he "had to have". Within two days he had literally watched the movie over twenty times. This weekend while we were away, he was pretty much dressed in his self made Musketeer costume the entire time we were gone. He told my mother that he was going to be a Musketeer when he grew up, Mom broke it to him that there are no Musketeers and it really wasn't a job option for him! (He hasn't watched the movie since!) :) I wish my camera was time stamped, because in the course of two days, here are all of his costume changes!

A store bought pirate costume

His "home made" pirate costume

A fireman...

His home made Musketeer costume

His home made Musketeer costume after he insisted he needed gloves to complete the outfit!

A police man...

And perhaps Daddy let's him watch too much Cops on Saturday night?!? :)

Thursday, February 19, 2009

Feeding Clinic Appointment

We had our much anticipated feeding clinic appointment today, and while it didn't go exactly how I would have liked, it was positive.

Alex now weighs 44 pounds, 7 ounces and is 4 feet tall. That puts her in the 10th percentile for her weight and 50th percentile for her height.

We met with a team that consisted of a pediatrician, feeding therapist, nurse practitioner and nutritionist. We went thru the usual history, and then I got on to bragging about how awesome she's been doing with her eating. Well, you know how when you take you car into the shop because it's making funny noises and when you get there it runs perfectly? Yeah, kind of the same thing happened...!

For the last six months I've been feeding her Stage 2 baby foods - and she mastered those. So 2 weeks ago I graduated her to Stage 3 - more chunky foods. I guess I was a little over zealous and packed a Stage 3 Turkey with rice and carrots. So when I started to feed her it was more chunky than what I had been giving her and she was basically spitting it out. So they asked if I brought anything else, and of course, I hadn't. So they asked if I thought she would eat some applesauce, which I said probably. Yeah, you would have thought I put arsenic on her tongue because she made these horrible faces and spit it all out. "Well, what do you think she will eat" they asked....sheepishly I asked if they had any Stage 2 foods, kicking myself for not being better prepared. They leave the room again and come back with a Stage 2...of course it's the soupiest one they could find so it dribbles all out of her mouth. "Do you have any Thick-It" (a powder that thickens up food to a nectar consistency) they ask? YES, I have some right here in her back-pack. Well, perhaps I should have checked that before the appointment because it's the container that I send to school with her and of course, it was empty!! So they leave the room for the fourth time to go get some. I have a little pep talk with Alex while they're gone and when they come back they said they ran into Amber, which was Alex's therapist the two times she was enrolled in the feeding clinic - and for a little background, she was basically kicked out of the feeding program for failure to progress...but that's another story and I'm still a bit bitter about it! So they tell me that Amber's going to come in and see her and I'm thinking to myself, great, Amber's going to come in and Alex is going to make to complete liar out of me, when I want her to shine the most! I add the Thick-It and viola, she starts eating like a champ - thank you Jesus because I am literally sweating at this point!!!! Amber comes in and can't believe how big Alex has gotten (she was 3 when Amber worked with her). She watches her eat and says, absolutely she's ready for pureed food, she did some oral motor checks on her mouth and tongue and is really pleased. Everyone leaves the room and I'm so excited thinking YES, we're getting off the tube and onto the blenderized diet!!!! WRONG. The nutritionist came back in and said that Alex has only been gaining 2.3 grams a day since her last appointment (8 months ago) and expected weight gain for her age is 7.7 grams a day so because she's already at a deficit for her weight she can't wean her off the tube feedings, rather the volume has to be upped. Uggh I was so disappointed.

So the plan for right now is to take her off the baby food feedings that I do and start feeding her the blenderized recipes in place of the baby food twice a day and up her tube feedings by ounce four times a day. In a month we'll go back for a weight check and if she's gaining enough weight, we will talk about the plan for weaning her off the tube feedings. If she's not gaining, we have another clinic appointment in three months. There is a waiting list right now for outpatient feeding therapy and since she has the g-tube and is not a failure to thrive patient, it could be three months before she becomes a patient again. While I'm slightly disappointed at that, I'm ok with it at the same time. With Physical Therapy and Speech every week, and Alex going into the intensive Physical Therapy program for three hours a day, five days a week for three weeks coming up on the horizon, not adding another weekly therapy appointment into the mix is probably a good thing right now. We've come a long way without the feeding clinic so I'm confident enough to start all this on my own at home.

Tuesday, February 17, 2009

The Invisible Mom

Tonight as I was wiggling out a loose tooth, wiping butts, folding laundry, starting a new load, packing back-packs, cooking dinner, washing dishes, running baths, brushing teeth, reading stories, being the third musketeer, and all the other things we moms (and some dads!) cram into an evening, I was reminded of this e-mail I got today...so here's to all my wonderful, invisible, friends...and Mom and Dad, thanks for being great builders! :)

Essay for Moms

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask me a question. Inside I'm thinking, "Can't you see I'm on the phone?" Obviously not. No one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.

I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this? Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history, and the mind that processed important issues, but now they had disappeared into the peanut butter, never to be seen again. She's going; she's going; she is gone!

One night, a group of us were having dinner, celebrating the return of a friend from England . Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic when Janice turned to me with a beautifully wrapped package and said, 'I brought you this.' It was a book on the great cathedrals of Europe . I wasn't exactly sure why she'd given it to me until I read her inscription: 'To Charlotte, with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over.

You are building a great cathedral, but you can't see right now what it will become.' At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride. I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'you're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Thursday, February 12, 2009

Fun at PT!

Quick video of Alex at physical therapy. Her therapist Shannon and Miss Sandra make it so fun for her....seriously, she (or I) couldn't ask for a better team to be working with her. They motivate her so much and have such patience! I will always remember Shannon crawling on the floor with Alex in her walker while she was eight months pregnant, belly dragging on the floor...Shannon, you make me sweat watching you and I hope you know how much we appreciate you!!!!!

Clearly she was playing a game with them here! :)

Oh - Alex got her 9 week progress report sent home from school today..."Alex continues to make progress in all areas, especially on her choice making goal. Great work!! :) Yeay Alex! :)

Monday, February 9, 2009

Speech Therapy

Mostly at speech therapy we've been working on eating. Eating motivates Alex to use her communication switches and when Alex sees Beth she gets so excited because she knows she's going to get to eat! If Beth tries to work on communicating and toys first, Alex pretty much ignores her! :)

We recently found out that there's a possibility that we're not going to be able to keep Beth as our therapist and the thought just makes me want to cry. Alex LOVES Beth. It's rare to see Alex have a connection with anyone, and the way she looks at Beth and smiles at her just melts my heart.

Here's a video of Alex eating and using her switches...

And here's Alex just trying to charm Beth with her smiles :)

Tuesday, February 3, 2009

Doing Better

I know it's only Tuesday but so far we are having a better week. Zach is better and back to his happy, lovable self. While I'm still struggling with Alex, the last two days have been good and have lifted my spirits some. Yesterday we opted to forgo her afternoon feeding for the first time ever and just feed her by mouth - a goal we have literally been working on for six years. She ate two whole jars of baby food in one sitting, I gave her the necessary water through her g-tube and then fed her another jar of food two hours later while we ate dinner as a family and she did awesome. She didn't appear hungry at all so I'm really thinking feeding her a blenderized diet is going to be obtainable in our near future and that thrills me. Today she had physical therapy and despite waking up a half a dozen times last night and only taking a 20 minute nap at school (she normally sleeps over an hour at school), she did AMAZING. She was weight bearing and stabilizing her trunk very well and she actually took a few great steps in her walker.
Thank you to all of my wonderful friends and family for being so supportive.