Wednesday, January 25, 2012

Sadie's first day of "school"

Daycare went better than I could have ever expected today. After my post last night, I got a lot of responses, both on facebook and as blog comments, saying that I should ease into it. People suggested that I take my time moving a little farther and farther away until I'm in the car. While these were good suggestions, they only stressed me out more. I was going to get to Daycare around 11:00 and I had to be at Starbucks, signed in and working by 11:30. There was no time to wean myself, so then I started worrying that maybe I'm going about this all wrong!!

But we were fine. Both of us.

First of all, I got the go ahead from GI to give Sadie a second dose of reflux medicine (that is FINALLY actually working) in the evening... and she slept all night. So, she woke up happy and rested and probably feeling pretty good compared to how crappy she's felt the last 2 weeks!

We headed off to therapy and she didn't puke, she didn't scream, she hardly protested when Tami had her all twisted into a pretzel!! I'm glad Sadie is usually really good for Tami because for that first year of PT, all Sadie seemed to do was scream. Tami has really paid her dues!

After this kind of morning, I wasn't worried at all about daycare. Miss Lauren was expecting us and the other teachers welcomed us when we walked in the room. I showed her what was in the bag and she said they'd label everything (I told her I didn't know how!). I showed her the journal and she said they have their own form that they fill out daily that logs when diapers were changed, what your child ate, and some comments about what she did that day. Plus Miss Lauren also created a special sheet for Sadie to log her tube feeds and how much liquid she was getting.

Have I mentioned before how much I like everyone at UCP?!

We got there right at lunch time, and what Lauren showed me had been "pureed" for Sadie was a little chunkier than Sadie is used to, but I told Lauren to go ahead and try. However, I did mention that Sadie has some post nasal drip and is having trouble swallowing, which leads to gagging, which leads to puking. And that breakfast was a struggle, so just watch for warning signs like lips or teeth clamped shut, gagging, etc. But I wanted Sadie to try it, it was cheeseburger and green beans and Sadie's not used to eating food like that. It was good for her to try something new. Miss Lauren said Sadie ate 6 bites, which is amazing!! Way to go Sadie (and Lauren).

Sadie didn't take a nap (no surprise there), instead Miss Lauren took her for a walk outside while the other kids slept. I'm sure Sadie really liked that!

And when I came back to pick her up everybody still had smiles on their faces! Yay! Success.

However, Sadie almost always makes a good first we'll see how Friday goes! To be fair, we did warn them that Friday may be a scream-all-day kind of day. They didn't even flinch. Really, I love these people.

In other news daycare cleaned out my diaper bag and then kept it all there, so when we went to the mechanic to have them look at my AC on our way home, I wasn't prepared for poop or puke. I had nothing. No rags, no diapers, no wipes, no change of clothes. Nothing. I was so frustrated and embarrassed. Needless to say, by the time we got home Sadie (and Mommy) was a stinky mess and went straight into the tub!

Oh, and our handicap parking permit came in the mail today, so that's pretty exciting!

Tuesday, January 24, 2012

Day Care Doom

So, I had this fantastic idea that Sadie would start day care at United Cerebral Palsy (UCP) this winter. I worked it out so it fits into our schedule, we went and toured, then did a little orientation with her teachers. She was so happy when we visited and all the little kids wanted to touch her and play with her wheelchair.

But now, it's the night before we go, and I'm totally freaked out!!

What if she screams all day? They're going to hate her! What if she pukes on them first thing? What if they don't feed her right? What if they lay her on the floor and she refluxes all over their carpet? What if she chokes on something? What if I didn't label her stuff well enough? What if I forget something?

There are so many things to think about that I've spent the last 2 hours packing her bag and making a special "journal" to keep in communication with her teachers.

They asked me to write out feeding instructions. I drew pictures. I also wrote out what to do if her button comes out for some reason (they have a real fear of this, although, it's never happened...yet). I put this all in one of those composition notebooks I had leftover from my classroom years ago.

Then I made a section for communication between me and the teachers. I need to know if she poops, I need to know how much liquid she got. These are things I obsess over on a daily basis to make sure my child is healthy!! I want to know if she threw up every time they fed her, I want to know if she screamed all day and they couldn't calm her down. And I want to know if she had a great day and took a nap and interacted with all the other little kids and sat independently at the table.

Do you think I'm asking them to do too much? I mean, it's Special Needs daycare after all, they've got to know they're going to get some high maintenance kids (parents?).

I'm sure I will calm down after a couple of weeks, but tonight I am not calm. I'm not sure I'm even going to sleep tonight.

I'll be sure to report back tomorrow and let you know how it went.

January 24th

When I was a little kid, my best friend lived down the street from me in a cul-de-sac. Her birthday was January 24th. We lost touch somewhere in Middle School I think, but I don't forget those easy-going days of riding our bikes and climbing trees through our neighborhood together.

When I was in high school, I had a friend whose birthday was January 24th also. He meant a lot to me, even after he started making poor decisions. And even now, though I denied his friend request on Facebook, I still think about him every year on January 24th. There is a part of me that will always hold him dear to my heart.

And now January 24th has a new meaning for me. January 24th was the day we made the decision to unplug Sadie's breathing tube and ask the nurses not to resuscitate. We were prepared to say goodbye. January 24th will always remind me of the hardest decision I ever had to make.

For some reason this day has just always been meaningful in my life.

Now, on this second anniversary of that horrible day when we cried and cried and thought we'd lose our baby, I have just one request of you.

When you kiss your children tonight, make it meaningful, take a moment to really reflect on how lucky you are to have them. Whether they're special needs or typical, whether they're healthy or not, whether or not you're busy doing other things, tell them you love them. And really mean it.

Sunday, January 22, 2012

Daring to dream

Sometimes at night I sing to Sadie when she's going to sleep. When I was little I remember my mom singing "Somewhere Over the Rainbow" to me. So, I've recalled the words easily and that's one of the regulars I sing to Sadie. But a few nights ago I couldn't make it through without crying. It's the line "and the dreams that you dare to dream really do come true."

That line gives the impression that you have to be brave to dream. And I've never thought about dreams this way. I don't know, maybe I've just never had any dreams big enough that I had to be brave to dream them. But I understand what this means now, because I have dreams for Sadie that I'm a little afraid of thinking about, because I'm so worried I'll be disappointed.

But I'm gonna be brave, and I'm going to share with you my dreams for Sadie that I dare to dream.

I want Sadie to be potty trained. We have such an amazing PT who has never once considered that this isn't possible. She even suggested that if Sadie can learn to tell us WHEN she has to go, we can have a special toilet seat that will support her even if she can't independently get into the bathroom or sit on the toilet by herself. I don't like the idea of changing big-kid diapers, so I really hope we can achieve this.

I want Sadie to be able to stand and possible walk 10-25 feet by herself. Even if she could do this with assistance I'd be happy. Most people probably haven't thought about what a difference this could make. If Sadie isn't exclusively confined to a wheelchair we don't need a wheelchair van. If she can stand and walk a little, even with assistance, she can get into the car. When we travel, if Sadie can walk from the end of the jetway to her seat, that means a lot less work to get her on the plane. It means potty training. It means getting what she wants/needs around the house without me having to wait on her every moment.

I want Sadie to be able to eat and drink without having to rely on her tube. In fact, what I'd really like is for Sadie to be able to feed herself. But if she's eating, I'll take what I can get.

And finally, I'd really like Sadie to be able to talk. If that means with the assistance of a computer, that works. But, I am really sick of trying to guess what she is yelling/crying about. I want her to be able to tell me, "mom, I want to go play on the floor," or "mom, I need something to eat," or even "mom, I have to go to the bathroom."

Of course I have no idea if these things are possible. I guess only time will tell. But they are safely held in my heart. And each time I sing "Somewhere Over the Rainbow" to Sadie, I will wish with all my heart that there really is a place where all the dreams that I dare to dream really do come true.

Friday, January 20, 2012

Sadie's 2 year well check

It's sort of strange to think about that it's already been two whole years since we were in the NICU, since we met Dr. Wendy, since we thought our baby was going to die. But, I was always told when I had a baby that time flies...and I'm not really sad that it has.

Sadie and Grammy and I went to see Dr. Wendy today for Sadie's two-year-old well check. And there was no car screaming. And there was no nursing in the lobby just to keep her quiet. ANd there was no wrestling the stroller through doorways and down halls (the wheelchair maneuvers like a dream!!). And there was no stripping her down and laying her on a scale stark naked and screaming. And there were no shots. And I started thinking that maybe I can handle this!!

Sadie still isn't feeling completely 100%, but she bucked up and did a good job. We weighed her @ 27lbs. We thought this might be a little light...but she has been sick for the last couple of days. Even so, she's still holding strong in her weight percentile!! We measured her length too, but I didn't take note of it...somewhere in the 40s? I don't always rely on a perfectly accurate length measurement because Sadie doesn't lay flat usually, so they have to pull her legs, which results in her head moving down, which I'm supposed to hold against the wall, but I never can do it perfectly. So who knows how long she REALLY is! haha

I've heard rumors that Dr. Wendy is the only special needs doctor now at this clinic, so since it's a teaching hospital, we always see a resident first. I guess it helps Wendy out a lot, but it's sort of annoying. Because they don't know us, and it's a lot of work to explain everything to them and then have the same conversation again with Wendy when she comes in later. I know they need practice, so whatever, but it's still annoying.

The best thing about this appointment was learning that Sadie's lungs and ears are clear. Having her be sick with a cold (really for the first time) I was a little worried about these 2 things. But it's just a cold. And the doctor, who was a little over cheerful for anyone's good, assured me that what's going around shouldn't last longer than 5 days, even though that snot might stick around for a couple more. (I can already tell that Sadie's feeling better!)

When Wendy came in, we mostly talked about her authorizing that Sadie could benefit from an hour of speech each week (in addition to her feeding therapy), and the letter from the OT about getting a swing. And Sadie was good enough to show off her independent sitting, which Wendy was amazed by.

We have a big girl. A healthy girl, and even though we need to come in and have somebody check Sadie's weight every 3-4 months, we don't have to have another well-check for a year! There was even talk about having well-checks in the summer since Sadie's birthday is during RSV and flu season. Now THAT'S a good idea!!

And on to a new year and new things!!

Sadie's (Craptastic) Birthday

Birthdays are supposed to be fun and celebratory, right? But when you're 2, and you're brain damaged, and you aren't feeling well...then, I guess it's okay to have a bad birthday.

For the last 2+ weeks, Sadie has been having trouble sleeping. So much so that I feel like I'm walking around a zombie again like I have a newborn. She's 2. I shouldn't feel this way. But nonetheless, sleep ebbs and flows around here, and we're in an ebbing time. And it sucks.

Then, last weekend, Sadie started getting stuffy. She had a couple of nights where I just felt bad for her. She couldn't sleep because she couldn't breathe. So she started sleeping upright in her chair...which is somewhat easier because then at least we can rock her. We've been at a loss lately for comforting techniques when Sadie won't sleep, especially without the pacifier. But she still loves to rock!

Thursday morning (her birthday), Sadie woke up with a full-blown fever. Her hands and feet her freezing, but her face was hot hot hot and her cheeks were all pink. It was our first cold (we just had our first flu about a month ago...I don't know how some of you deal with sick kids all the time, this is HORRIBLE!).

And luckily Grammy's here visiting, because Thursdays are the only day of the week where I work a full 8 hours. And our respite provider quit Wednesday night, and Brian left for California at 6:00 that morning. And I was left all day with a feverish, sick, screamy 2 year old. And it was her birthday.

We let her go as long as she/we could stand it, and then around 1:00 we pumped her full of tylenol and benadryl and she finally took a nap. But that didn't make her feel better or stop the screaming.

6 hours later we started getting ready for bed. I gave her more medicine, thinking she was so tired from being sick all day and screaming about it, that she'd go right to sleep. I was in her room rocking her from 7:30-10:45. My entire evening gone.

And it didn't stop there, she was awake again at 3:30 and I spent another 2 hours in her room trying to get her back to sleep. She obviously still wasn't feeling well and was so tired (as was I), but was thrashing in her bed like she just hurt.

And then we had to wake up early to get to the doctor by 9:00am the next morning.

I guess I'm thankful that she won't remember it as a horrible birthday, she probably won't even remember it as a time that she was sick. But she's 2 now and that's really all that matters. And I guess I'm thankful for such a craptastic day, because I didn't have any time at all to focus on her birth 2 years ago and was too tired to get all emotional about it.

Really, it's hard to believe she's 2. It's amazing to see where we've been and how far we've come. And even though the future is scary to think about, we've got a lot of exciting and good things ahead of us, and I'm eager to see where we'll be when she's 3.

Hopefully NOT sick.

Monday, January 16, 2012

Brutal Honesty about our Future

Just before Christmas I watched a movie called Lorenzo's Oil. I had heard of it through my special needs mommy group, but I wasn't prepared for how sad it would make me. See, in the movie, they find out that their little boy, Lorenzo, has a genetic condition that will lead to the shut down of his entire body, and eventually, his death. So, they work tirelessly to figure out what is going on with his body and how to reverse the effects. It's complicated, and you can watch it (I found it on instant Netflix) if you want to, but the part about them finding a cure isn't what hit me, it was the part about watching your child die slowly before your eyes.

It made me think of a friend I made recently. She has a son with Batten's disease, which isn't the same thing as Lorenzo, but basically has the same result. Only my friend's son has a rare form that means he will pass away before he's 5. He is a month older than Sadie and they've just started hospice care this last week. I had no idea what she was in for until I watched that movie. The reality of losing your child didn't make sense to me before, but now I realize that it has to be the worse thing ever in the world to experience. And she's not just losing her child...she's watching him die slowly, little by little, while she watches and prays for just a little more time.

It's hard for me to comprehend having a child who has no future. All we think about in our house is of the day when Sadie will be able to sit, eat, talk, walk, etc. We think about our future needs as far as a wheelchair lift on our van, taking Sadie to school, or if potty training is EVER in our future. But my friend, her future is without a child, without her child.

And dare I say that I'm a little bit jealous?

Can I be that honest here? Will you all judge me? Probably not, because I know if you have a special needs child, you've considered the possibility of how much easier it'd be if your child, the one that you love so much, the one that you pour your entire life and all your energy into, just wasn't there anymore. And I know that my friend would disagree with me, because I know that she would give anything to get to keep her little boy forever, even if he has severe disabilities. But everybody has their own battle to face, and when you're in the midst, the other side always looks better, even if it's really more bleak.

The thing is, when I think of our future, I don't only see all the things Sadie will learn to do and grow up to be, I also see that family vacations will never be normal. I see that our family will never be able to go hiking or camping. I see people staring at us, feeling sorry for us. I see having to deal with puberty (really scary). And I see spending a lot of money and a lot of time on services and equipment. It's all a little bit overwhelming, so I try not to think about it too often, actually.

But can you blame me for thinking things might just be a little easier if she was gone and we were no longer a special needs family?

Don't get me wrong, I love Sadie and she is my whole life. I love to tell people about her and proudly exclaim how much of a miracle she is. But, I know that our family is not what we envisioned when we first got married and decided to have children. And I know that my friend never could have imagined she'd be dealing with watching her little boy die.

So I just hope, for both our sakes (and everyone else's really) that we can continue to see the bright side, focus on the positive, and mourn and cry freely when we need to.

Thursday, January 5, 2012

putting a positive spin on things

My job description has changed a little this semester. Instead of teaching Freshman English, like I have for the last 2.5 semesters, I'm only teaching an elective. Public Speaking. Don't get me wrong, I like that class, at least I did last semester, but that's not all to my job. We also started an open enrollment course this year for kids who enroll late...I'm also teaching Public Speaking as an open enrollment course. I have no idea what this will bring, I have no idea what to expect, but I do know that the other open enrollment teachers are more awesome than I could have ever imagined. They are funny and they are flexible and they are open to new ideas.

The teacher who is sort of heading this whole open enrollment project is probably the most positive person I've ever had the pleasure of talking to. She is always in a good mood even when things are bad. She always manages to laugh at herself when she makes a mistake. And she has the sense to always find the positive side to any situation. You can tell she really likes her job. You can't help but be happy when talking to her!

We don't know each other that well, so, like I usually do, I just mentioned in passing that my daughter has special needs. I usually don't make a big deal out of it, but, especially with people that I'm working with, I like to just drop the information and let them do what they will with it. Some people ask questions, some people tell me how amazing I am and that they could never do this, some people don't really comment at all...but at least they're on the same page when in conversation I talk about therapy or wheelchairs or that my 2-year-old is just learning to sit. Anyway, this teacher had a completely different reaction, one that I've never experienced, and I haven't stopped thinking about it for the last 24 hours.

She said to me, "I didn't know you have a special needs child! What a wonderful journey you are on!! I've had the pleasure of sharing that 18-year journey with my sister and her special needs child!!"


I've never looked at my life as a wonderful journey. I've never thought that hard about the things I get to experience with Sadie that other parents don't. I've never thought of the people I get to meet and the things I get to learn because my child has special needs.

And now I can't STOP thinking about it.

Sunday, January 1, 2012

Nice to meet you 2012!

Last year for New Years I wrote this post about how I wanted to write more, cry less, and rejoice in all the blessings in my life. Well, I think I've done pretty well so far, don't you?

I imagine most parents feel amazed at how much can happen with their child in those first years, but when I look back to a year ago, I realize really how much of a difference a year makes and I get excited for this next year!

Over the course of 2011 Sadie said goodbye to the bouncy chair, and said hello to LOTS of new teeth! She stopped nursing, learned to eat, and got a feeding tube.

In 2011 Sadie learned to let someone besides Mama take care of her. She learned to sleep in her own room, in her own bed. She went to swimming lessons. She got an ipad!

Sadie met some new doctors in 2011 and she spent some time in the hospital. She also spent her first night (2, actually) away from Mama. She visited Washington for the first time, and Oregon for the third and fourth time. And she met her new cousin, Theo.

In 2011 Sadie stopped screaming in the car!!!

Wait, let me say that again... Sadie stopped screaming in the car!!!

In 2011 Sadie got a wheelchair and a chillout chair and a big girl high chair. She started sitting independently, and rolling over purposefully. She even started reaching a little.

Sadie met Santa for the first time in 2011, moved into a new house, and got her first pair of shoes. She also fell in love with Sesame Street, and especially Elmo.

Sadie started communicating more in 2011, she's happier now, and she can now fall asleep without the pacifier!

Whew! Does that pretty much sum it up? I'm sure there's more, but those are sure a lot of blessings this year to be thankful for in just one year! Looking back this way really shows how amazing our life is.

In a few weeks Sadie is going to turn 2. It's hard to believe that this little baby that doctors told us would not even be able to breathe on her own or live to be 1 month old has been alive for 2 years. And she is doing so well! And she is cuter than I could ever imagine! And she is loved so much by so many people.

This year is going to be full of so many more great things in our lives, and I can't wait to look back in a year and see again how fantastic the year has been again. This is a special little girl with a great gift to charm anybody she meets. She has a lot to look forward to, and so do we. The future is nothing but bright!

Happy New Year everybody! May 2012 be even more wonderful for you than 2011!