Sadie's first Sunday School

Sunday morning wasn't really Sadie's first time going to Sunday School, but it was the first time at this church. I started going to a Vineyard church with my parents a couple of weeks ago, and it's the first time since I moved to Phoenix in 2005 that I've felt like I belong at a church... The way I did in Junction City.

Last week I attended what they call a "new friends luncheon" which is basically a get together for people who have been attending just a short time so they can make connections and get to know the ministry staff better. It gave me an opportunity to tell some people our story and to have a good talk with the children's pastor about Sadie. She was excited to have Sadie and talked about the teachers being okay with it and everything, so I felt really encouraged.

Saturday night, however, was not a good night. Sadie was awake for 4 hours in the middle of the night, which meant so was I... And so was Brian for most of it also. I did not want to wake up, wake Sadie up, and get us both ready for church. I really considered not going. And as I laid there in bed going over how long I could sleep before I HAD to get up, I realized that I actually WANT to go to church, and Satan knows that, and his goal is to keep me home and he's trying his best...so I need to get up and show him who's boss! I remembered that even though I'm tired and grumpy that God will give me strength to do the things I need to do...like go to church, and take Sadie with me.

Satan wasn't done throwing his crap my way though... Sadie was in a bad mood (who wouldn't be after a night like that?) so I had to give her some drugs...at 9:00 in the morning! Then when we got there I was trying to feed her in the car in the parking lot and the tube clogged and exploded all over me! But when we got to the Sunday School classroom the children's pastor was there and the Sunday School teacher was ready to take Sadie out of her wheelchair and play with her on the floor. I had made a little cheat sheet with bullet points to help them and they seemed like they had it completely under control. I was totally confident that I was leaving Sadie in good hands.

Something this church does that I've never seen a church do is instead of a short greeting time during worship, they actually stop the service and take a 15 or so minute break to greet and get coffee and fellowship. It's really cool. So during this time, my parents (who got to church a little late) went to see Sadie in Sunday School. They said she was happy and she gave them big smiles when she heard their voices. My dad always loves it when Sadie turns to his voice...she knows her grandpa and she knows he loves her!

After church I went to get her and they told me she did really great...she even pooped! Haha they went outside on the playground for a little while and they said they took Sadie out there and she loved it. She learned about the prodigal son and made a bracelet out of fruit loops! And they said the other kids did really well with Sadie and interacting with her.

I probably won't take Sadie with me every week, because it's nice to have a break from being Mommy...but sometimes Brian needs a break too. So, it's good to know we'll be welcomed and well taken care of!

Breaking up is hard to do

We're going to have to break up with daycare.

Here's the deal. Every Wednesday and Friday I drive almost 45 minutes to take Sadie to Physical Therapy...that's how much we love our PT! And I figured since I'm already that far away, why not try taking Sadie to the special needs daycare (United Cerebral Palsy) which is also 45 minutes away from our home, but only about 10 from PT. Then, while Sadie's at daycare, I spend 4ish hours at Starbucks working.

Sounds like a good deal, right?

Last week our beloved Physical Therapist told us her business is changing and she's no longer going to be at that location, but instead only do home visits. Her business partner has taken another job and will be significantly decreasing her patient load, so they have to cut down on costs to stay in business. And her home visits won't be anywhere near where we live. *sad face*

But, as sad as I am to lose Tami, I'm not really that sad about not driving 45 minutes one way twice a week, or having my butt go sore from sitting in a hard wooden chair for 4ish hours, or getting home and realizing that I smell like coffee... or paying $100 a week for daycare. And Tami said she could see Sadie at daycare, but I told her, if we're not driving up there specifically for therapy, I'm not sure I want to do daycare anymore.

Brian agrees. We'd be saving a lot of money by breaking up with daycare. In fact, we're even thinking about taking that money and spending it on a cleaning lady instead. (my dream come true...)

So why am I nervous? Is it because we haven't really been there that long and I feel like they made some huge adjustments for us? Is it because I feel like I might regret it? Is it because I'm afraid they're going to shove a paper in my face "reminding" me that I signed a contract for a certain amount of time? (I don't remember doing this, but that doesn't mean I didn't) I guess I should just do it.

Dear daycare, it's not you, it's us. We love you, but you're inconvenient, and expensive, and we need to move on. I hope we can stay friends.

Love,

Sadie and Mommy

so.much.poop.

Last night was a rough night. Sadie woke up and wouldn't go back to sleep...for hours. I went in there and laid down with her and patted her, I finally gave up because I was so tired. But Sadie wasn't done, so Brian went in there for a while. But he gave up too.

After a couple of hours, food, medicine, rocking, and patting, she finally fell back asleep.

And this morning when I went in to get her I had a surprise waiting for me. Poop everywhere. It was on her blankets, all over her pants, her shirt and it had soaked through the blanket she was sitting on and soiled the chill out chair. It smelled horrible.

And Sadie felt better. She was smiling and happy and her muscles were loose.

The thing is, this is the second time she's done this in 48 hours.

Last time was in the car.

I'm not sure which is worse.

So.much.poop.

Sadie's growing up

Every once in a while we will put Sadie in bed, kiss her lovingly and gently on the forehead and then walk away. And she will put herself to sleep. On those nights we lay in bed and talk about what a big girl Sadie is and how far she's come. Then we roll over, and if we're lucky, we stay there all night and don't go back into Sadie's room until the morning.

Sometimes, if we're super lucky, this will go on for 4 or 5 days. We enjoy our evenings together as adults, we get full nights of sleep, we may even get to have sex. And we blissfully and ignorantly bask in the glow that is big-girl Sadie.

But Sadie is smart. She knows that we can't sustain late nights of screaming forever, so she gives us these breaks... for 4 or 5 days. And then it starts all over again. Each time we approach this late-night screaming, lay in bed with Sadie until she falls asleep, with less and less patience.

I am convinced that eventually this will reverse itself and the screaming herself to sleep will be fewer and fewer and the falling asleep on her own will be more and more.

Feeding Tube Awareness among Friends and Family

I've mentioned before that the idea of a feeding tube was really scary at first. In fact, we did everything to avoid it, because in my mind it was the wrong thing. But then I learned that it's not so scary, and when they put the NG tube in Sadie's nose and she started sleeping, and she didn't scream all day, I realized that I was so thankful for tube feeding. It was in fact the right thing!

I think it's kind of been the same for my friends and family.

I've realized throughout my 2 years with Sadie that my attitude about something (regarding her) really effects how other people see it. Especially if it's something unknown like a feeding tube. So, if I approach surgery and a feeding tube with bravery and I get excited about how it's going to change our life for the better, my friends and family pick up on that and they have the same attitude...for the most part.

Mostly they have a lot of questions, and they ask, because they know that I don't have a problem telling them all about it!

And so we have a feeding tube, and my friends and family watch me feed Sadie. And they've even done it themselves. Sometimes even, they've said they wished their kids had one!! It's funny how a little awareness about something new and different can change your whole perspective

A day in the life of a tubie

Recently we started blenderizing Sadie's food. So, this might be a foreign vocabulary word to you... but honestly it makes total sense. We put a bunch of food in the blender and liquify it so that it can go through Sadie's tube. I've always thought that giving her formula was weird. But it's been reiterated that the formula is "complete nutrition" and I shouldn't deviate from it. Really? Define "complete" please?

Since Brian and I have really been trying to eat real foods (as opposed to processed foods) it's been killing me that we still give Sadie this chemically balanced nutrition through her tube.

Until now.

Sadie got a cold right before her birthday. Remember that craptastic birthday we celebrated? She's still struggling with the residual phlegm that a cold leaves behind. You know when you're feeling better, but you're still blowing your nose and coughing stuff up? The thing is, she has a hard time managing it. So, I did what my mom taught me, I took her off dairy...in efforts to decrease the mucus and help her breathe, help her sleep, keep her from gagging and puking, etc.

Which led us to blenderizing her food. (Because her formula is milk-based)

We don't have a Vitamix...yet. I have been saving up the money I make selling my Button Beauties, and we've been working on getting letters from the feeding therapist and Dr. Wendy so we can qualify for a medical discount with Vitamix. We're just about ready to order, and I'm so excited, because, even though our blender works okay for Sadie's formula, I know that the Vitamix will work so much better.

So, our routine has just changed...it's always changing. I am somewhat obsessed about Sadie's feeding schedule, I want to make sure she's getting enough calories as well as liquid. She can't, after all, just tell me when she's hungry. And I can't just give her a banana when she is. And if we're tube feeding she doesn't get a say in when she's "done"... it's a very delicate balance.

And I'm always pushing the line because I hate hooking her up to the pump at night. (which only happens if she hasn't had enough during the day)

In the mornings I blend. This morning I juiced some apples and carrots and then grabbed some citrus from outside and juiced that too. I found this awesome basic recipe for blenderizing for a 2-year old, and so I have it on a sticky note on my fridge. I have some pre-grinded grains (this morning I used barley and oats) and I added those to the juice. Then I added some almond milk, some coconut oil, and some salt. Pretty nutritious, right? The thing is, what I blend for her is not enough nutrition to sustain her for the day. I'm counting on her eating some food by mouth.

I usually have a schedule in my head when I'll feed Sadie throughout the day, depending on our schedule. It's usually about 150 mL (5 ounces) every 2 hours. And I adjust that accordingly. I write down when I feed her and how much and at the end of the day, if she needs more liquid, I hook her up at night. If she was on formula, I could add that at night to her feed for more calories, but right now our blender is unable to blend well enough to put her food through the pump...I'm hoping this changes when we get our Vitamix.

Here's what happened today:

7:30 - Meds and 25mL water (while she was still sleeping)

8:30 - 100mL blended formula (BF) and 50mL water (again while sleeping...thank you tubie!!)

10:45 - 60mL BF and 40mL water (in the car just before therapy)

1:00 - 100mL BF and 50mL water (just after therapy)

2:00 - benadryl and advil and 75mL water

2:15 - she puked EVERYTHING up ...without warning

3:00 - 60mL BF and 40mL water

5:00 - 60mL BF and 40mL water

6:15 - 4.5oz of pureed baby food (she ate this like a champ, she must have been hungry. I'm so thankful that she understands hunger and that eating takes care of that!)

7:00 - Meds and 50mL water

This is only 750mL of liquid (and probably less because she puked everything up), and definitely not enough calories. I didn't work that hard at keeping her hydrated because I knew she'd be hooked up to water tonight. She'll probably get just over 400mL of water overnight.

I'm constantly thinking about how much Sadie's last feed was, how long ago it was, and when I should give her the next one. Everytime I feed her I wonder if she's had enough, if she's had too much. I don't know if she's still hungry or if she's going to throw up because I over-filled her. It's much easier when she eats by mouth...but it takes 5 times as long and a LOT more patience!!

I'm so thankful for the tube in so many ways, Sadie is doing so well with it. But it definitely takes some getting used to scheduling-wise!! And blenderizing only adds to the confusion. But we're getting it, it's like a puzzle, a challenge, to everyday get enough calories and liquid in Sadie without any puke!!

Why does Sadie have a feeding tube?

Little kids always want to know: "why can't she eat?" They are so innocent and pure, but they still understand that eating is important and they want to know why Sadie needs to have food put in her tummy with a tube. I usually tell them that Sadie has a hard time eating the way they do, with her mouth, so sometimes we have to give her food right into her tummy so that she gets enough to grow big and strong.

The fact is, I'm not really sure why Sadie needs a feeding tube. I mean, I understand that her CP causes her to have an uncoordinated swallow and that she doesn't know how to chew, and that she aspirates liquids that are too thin...but I don't understand why. She nursed just fine, and we seemed right on track to start eating food and transitioning to a sippy cup. And then we seemed to hit a wall.

All of the sudden she started coughing and choking when we'd have her drink. She started puking everything up right after she ate. And eating started to become so stressful for everyone. Especially Sadie. It was like her brain could handle it when she was little, because there wasn't much else to think about, but as she got bigger it was trying to learn so much more that swallowing kind of fell by the wayside.

Since Sadie got her feeding tube, I've learned that it's pretty common for children with CP to have a feeding tube, but that those who are less severe eventually grow out of it. Sadie has a feeding therapist who enjoys eating and wants all her clients to know the enjoyment of flavors and textures in their mouths, and so she works with Sadie so that someday we can rejoice in having the surgery to remove the tube and close up the stoma.

Sadie likes to eat by mouth. And I think someday she'll eat and drink well enough that we won't need the tube anymore. But she's only 2, and she has a long way to go in life and in eating.

Feeding Tube Awareness Week Kickoff

This week is designated Feeding Tube Awareness Week. The goal is to bring awareness to the many kids and adults who are tube fed. Tube feeding is an important part of our lives, and has made our lives so much easier. It's funny how quickly something like tube feeding can become so normal, when to so many people it's strange and unknown.

I used to think that a feeding tube was a horrible thing, and the thought that we might be going down that road toward one scared me and made me cry. But the truth hit me hard when I realized that it's not about me, it's about what's best for Sadie and what Sadie needs. And Sadie needed to be fed.

I didn't understand.

One morning at a Foundation for Blind Children parent meeting I started to talking to another mom that I sort of knew. I asked if her daughter had a feeding tube. She said yes and proceeded to demystify the whole thing for me. She showed me how it works, talked about how easy it is to give her medicine, and explained to me how it just made their lives so much easier. By the time Sadie had her NG tube inserted (that was the tube she had in her nose that we had to tape to her face) and we realized what a good thing this was for our family, I was eager to take the next step and have the surgery. The fear had turned to excitement.

Now I am locked into this society of people with feeding tubes, or with children with feeding tubes. I never knew it was so common. I never realized all the different issues that can cause someone to need a feeding tube. And I don't think our society recognizes it well enough either. It's like the breastfeeding issue. Someone who is tube fed feels like they need to conceal themselves when they're being fed, because it's weird and might be offensive. We shouldn't be made to feel that way, after all, I don't ask the fat guy at Costco who's stuffing his face with over-processed chemical food to go eat in the car because it's offensive, right?

But just like when I was breastfeeding Sadie, when I tube feed her in public, I also choose a place that is not real obvious, and I try not to bring attention to what's going on.

I think if more people better understood that a feeding tube is a gift of life for a child with special needs, then it wouldn't be so awkward or embarrassing or weird. I hope that if you know someone who is tube fed, or even if you don't, you take some time to ask questions. Learn more about it, and support those who use it.

Feeding Tube Awareness Foundation has a website. Check it out. There's even a video to celebrate awareness week and you can celebrate along with so many the beauty of those who use a tube!!