Sadie's mastered the puffs

Since I've gotten pregnant I'm totally grossed out making blended food for Sadie. (ew, just talking about it is grossing me out!) And while it's sorta been a curse, it's also been a blessing...because I've been feeding Sadie more by mouth.

First thing in the morning when Sadie wakes up, it's like her brain hasn't fully woken up yet and eating is too complex of a task. But she needs the calories and the blood sugar boost. So, I've been giving her milk in her tube, and we've been practicing eating puffs. To me, it kind of feels like she's having a big bowl of cereal!

Eating something this solid is pretty complicated, much more complicated than purees. She has to chew, she has to manipulate an object in her mouth in order not to choke, and she has to swallow deliberately. And for a long time she spent a lot of energy getting it OUT of her mouth (because that's basic instinct). Now, she's figuring out how to really eat them. She can even crunch, but I'm not sure she likes to crunch, it's kind of startling for her. I'm hoping this is a jumping off point for some more things like whole bananas (ie. not mushed), toast, maybe even Cheerios!!

Anyway, here's a video, enjoy!!

A Written Record

So, I kind of gave up on New Years Resolutions a long time ago when I realized that I'm really good at starting something...but don't have the gumption to finish it. But even so, it's hard not to want to start something new in the new year, it just seems so fitting! One thing I wanted to do more of this year is blog, but another thing I wanted to do more of (which I actually took for a test run in November) was to keep a written record of Sadie's appointments, my conversations with doctors, therapists, insurance, etc, and to write down big milestones in her life (like going all day without a tube feed!).

I got this idea from an article I read about how it was so important to record any information a teacher gives you about your child at school or any conversation you have with an educator or counselor, etc. So many people run into problems in IEP meetings and it's always helpful to have written record of what was said, when you talked to someone, when you first noticed the problem, when you first reported the problem, etc. I've been on the educator side of an IEP meeting many many times, and I know that having written observations and records of behaviors and things is so much more meaningful than just, "well, I think he started doing that a couple weeks ago..." Or, "it seemed to help a little bit when we changed his seating arrangement..."

So, I made a conscious decision that when Sadie starts preschool I need to really be keeping track of things...so I'd better start now. And what better time than the new year???

I first took it on a trial run. I took some suggestions on how to do it and then I altered it to make it my own. I think the article had a printout you could download and then you could keep them all in a notebook. I hate 3-ring notebooks. I needed something I could carry around in the diaper bag, or even in my purse, so I started with a composition notebook. You can buy these for $.50 at back to school time, other times I think they're like $1-$1.50. I used to use them in my classroom as journals for the kids to write in because, unlike spiral notebooks, they don't become a safety hazard with wires poking out everywhere! Usually at the end of the year, I would have a bunch of journals that students didn't want to take home with them, so I'd wrip out the pages they'd written in and I had a plethora of free composition notebooks!! Then I'd recycle and hand them out to students in need the next year...but after Sadie was born, there was no next year, so I still have about 10 or so on my bookshelf at home.

I use 2 pages. Most of the columns are on the left side so that I have pretty much the entire right side page to take notes on what was discussed.

I keep track of the following categories: date, if it was a phone call, a meeting, an email, a text, scheduled therapy, etc., the name and title of the person I talked to (if available), if I was called or if I initiated the contact (sometimes, if it's a scheduled therapy, I put the location in this column), the reason for the conversation, what was discussed, and then if it needs to be followed up on (I don't use this last column very much now, but I've left it because I think I might in the future). And for me, I'm not bothered to draw lines to make my own columns...but I understand why someone might like a printable, or to make their own spreadsheet or Word document. I guess you could also keep this as a digital record, but for me there's something I like about using different colored pens and actually WRITING in a book. I also draw in my own calendars, because I like to see just how long it's been since something has happened, or easily remember a date we started a new medicine, etc.

This is my calendar. I don't put everything on here, but the important dates I want to remember I make sure get written here.

Since I've been doing this, I feel more organized. I feel more confident when I call someone and say, "I spoke with ______ on this date and he/she said it would take 2 weeks, but it's been 2.5 and I still haven't heard." I feel like I have more patience, like when I'm waiting 4-6 weeks for Sadie's happy chair, because I have that exact date written down of when she told me 4-6 weeks. And it's fun to look back and see what Sadie did on certain days in therapy, how many therapies she missed because she was sick, or even remember the conversations I had with therapists about certain products or activities they recommend. I also keep phone numbers, emails, and respite schedules in this book. It's all there.

As I slowly (but surely) orient myself to this world of special needs, I'm learning the ropes and figuring out what works for us. And in 18 or so months when I walk into that first IEP meeting, they're gonna know that I am Mom and I am in control, and I am on their side, and I want to see the needs of my child met, and I am going to make sure she is where she will be serviced with the best care possible...and that I am writing down their every move!!

Bump Watch - 10 weeks

I've been following my cousin's blog through pregnancy, miscarriage, and now another pregnancy, and she does this thing every week she calls "bump watch." I love it because I get to hear how her pregnancy is going, I get to see her little tummy growing, and I get to celebrate with her in this healthy pregnancy after experiencing so much hurt and loss. (If you want to check her out, you can here Just Smile and Blog)

Last time I was pregnant, I didn't have a blog. I don't think I had anything to write about that people would even care to read. But now I do, so I'm going to copy my cousin and I'm going to start a bump watch with this pregnancy. I may not get to it every week, but hopefully enough times throughout my pregnancy that at least it'll catalogue my progress for me to look back on someday (after the morning sickness is gone!!)

So, here goes...

How far along: 10 weeks

Weight gain: Somewhere between 8-10 pounds? I weighed myself a few weeks ago, and I think I was actually OVER 10 pounds, but yesterday I was +10 pounds and this morning I was more like +8...could I be losing weight? When I go to the midwife, of course I weigh in like a small heifer, because it's like 3:00 in the afternoon, so I'm going with what my home scale says!!

What's up with my body: I mostly feel like poo all day long. There are periods where I think the sickness might be waning, but then it comes back in full force the next day. However, I've only actually thrown up twice...both times while making Sadie's blenderized food. It super grosses me out!

I think my tummy has been the same size for the last 5 weeks, and I am officially wearing maternity clothes 80% of the time (not like the full panel pants yet, but the ones that have the 3" elastic) because I can't comfortably button my regular pants.

Sometimes sleeping is tough because of weird dreams, anxious thoughts, or restless legs (restless legs is the WORST pregnancy symptom ever!! I'd rather puke everyday than EVER have restless legs again!!).

And I'm constipated...so now I can fully empathize with Sadie when she pushes and pushes and produces and tiny little fudge-nugget. It's not very satisfying at all...but I can't take miralax!!

Movement: I've had a lot of tummy gurgles lately, which in the beginning feel a lot like baby movement, but I know it's just gas...soon though it'll be baby. I've heard that you feel it sooner with the second one because you know what it feels like.

Gender: We had a conversation the other night and we decided that we DO want to find out...but we still have to wait a couple of months. According to the heartbeat myth, it's a girl. Sadie's heartbeat was like 180 something, this one's was 173 at our ultrasound on Monday...but who knows, maybe my kids just have a fast metabolism like their Daddy and so their hearts beat faster. I really don't have an inkling either way.

What I'm looking forward to: Group prenatal care. The clinic we've chosen does this "birth circle" thing where they group women together who all have a due date within about a month of each other, then once a month, instead of scheduling your prenatal appointment, you meet in the evening with this group of women. At this time, the midwife will pull you into a private room to discuss anything you need to with her alone, she'll measure your belly, weigh you, and listen to the heartbeat. They schedule guest speakers, have specific birthing discussion topics, and I'm guessing...tour the hospital? Or at least they talk about what to expect from a hospital birth...which will be good, because I have no idea what to expect from a hospital birth.

I feel like a first time preggo in a lot of ways. We got a bill from the clinic and I had to ask if the hospital was also going to bill us separately, if this included everything, etc. I just don't know!! I have no idea what it feels like to birth my baby into my arms and nurse him/her immediately. I have no idea what it's like to have people visit you with happy tears and to pass your brand new baby around. And I'm looking forward to doing that this time!

What's different this time around: This time around I'm definitely bigger. It was like as soon as my body figured out I was pregnant, my boobs grew (overnight practically) and my belly started growing...it's crazy!! I'm also sicker this time. Or maybe I just feel sicker because I don't have the luxury of sitting on the couch all day eating dry Cheerios like I did last time. I have a 2 year old to take care of now, a disabled one who can't do anything for herself. And it's making me more tired, more grumpy, and more sick.

Also this time around Brian is different. When I was pregnant before, he didn't get it. He just kept acting like I could get over it. He also wasn't too sure about this Daddy thing before, he was nervous and probably a little scared. I feel like he's approaching baby #2 with confidence. He's excited. And he gets that I need a nap, that I don't feel well, that I don't want to eat dinner, and that I just generally need help with Sadie.

And every night he wraps his arms around me and puts his hand on my belly and says, "good night little zygote."

Swimming at Ryan House

I started feeling really guilty yesterday about leaving Sadie at Ryan House. I wonder if she understands where she is, why she's there, that we're coming back, etc. I mean, she's not like a normal kid, who you can explain these things to (whether they totally get it or not). I have no idea what she comprehends! I just didn't want her to feel abandoned.

So, I went and visited her today and took her swimming.

When I got there she had just woken up and the nurse was working on changing her and getting her ready for the day. She was so happy to see me, she just kept smiling and she was cooing at me!! We put her in her swimsuit and headed for the pool.

At the pool they had this floaty that goes around her neck. I've always wanted to try one of these things, but never had the chance. I was a little nervous that her head would slip right through the hole, but it didn't. And soon Sadie and I got more comfortable with it.

She quickly figured out how to kick her little legs and she could swing her body from front to back. She was ALL OVER that pool! I basically had to just chase her around! I think she loved the independence this thing offered her most of all. She had so much fun.

I think she's having a good time at Ryan House. I mean, nobody has called me this time in a panic! They said she's been sleeping at night, and despite that "witching hour" from 4:30-6:00 where they can't get her to stop crying, she's been pretty happy! I definitely felt less guilty after visiting her there. They take good care of her, and she enjoys being around other people, I think. I'm so glad that we tried it again and that this time we had a much better experience.

All clean after her swim and a bath, and in the wagon ready to go back to her room!!

One more night and she comes home!

Sadie's first sibling!!!

Guess what???

Yep, we're pregnant again!! We've actually known for over a month now, but I wanted to wait until we had a picture before I posted it here.

Sadie's going to be a big sister and I'm so excited for what that means for our family...

A chance to heal.

Someone to inspire Sadie and hopefully spark competition.

Another kid for Sadie to interact with on a regular basis.

Breastfeeding again (I loved that part of having a baby).

Upgrading our family vehicle to a van!!

I am 9+ weeks along and our due date is October 11 (or 13th depending on which midwife you ask). According to our ultrasound today everything looks healthy and baby is measuring right where he/she should be. The heart beat was 173...so we might have another girl on our hands. If I remember correctly, Sadie's heartbeat was like 180 the first time we heard it!!

We are going to do another natural birth, with a midwife, but we've chosen to birth in a hospital for safety and our own personal feelings of security. We found a clinic that has 3 midwives, they birth in a nearby hospital, and we will get whoever is on call. We've only met one so far, and we brought Sadie to our first appointment so as there'd be no "secrets" or misinformation. She fell immediately in love with Sadie and wasn't spooked at all by our story. She understood that we're a little bit nervous, and I think she's confident and experienced enough that she will help ease our fears and answer our questions as they crop up.

This is a new and exciting time in our lives and we are so blessed to be healthy and happy and pregnant again!!

Ryan House...take 2

Today we brought Sadie to Ryan House, where she's going to stay for the next 3 nights. Last time we tried staying at Ryan House was almost a year ago and, if you remember, it didn't go as well as we'd hoped. (read about that here) But Sadie is bigger now and much more independent, so we're hoping it'll be a more pleasant experience this time.

Ryan House is a respite facility where children with special needs, and their families, can come stay. It's like a resort for special needs kids... in fact, we've dubbed it "Club Spesh." It really is an amazing place full of caring people who WANT to be there taking care of our kid. And there are so many cool toys and things to play with, what kid wouldn't want to go there???

But 3 nights away from my little girl is unprecedented. I have never been away from her even for 24 hours. So, this is kind of a big deal. While I was excited to have a break, I was also really nervous.

Dropping her off went well. They asked me if I had any goals for her while she's there, I told them I just wanted her to be happy. That's reasonable, right? We brought her back to the light/bubble pole and immediately she was happy...just like last time!! We stayed for about an hour and a half, and then we left her in completely capable hands.

On the way home, we realized we could go do whatever we wanted...we didn't have to go home!! So, we went and looked at new cars. Then we spent a quiet evening not rocking, not worrying about puke, not fighting Sadie to go to sleep.

Here's hoping we don't get a call in the middle of the night!

Feeding tubing it at Ryan House

We're getting ready to take Sadie to Ryan House again.  We drop her off on Sunday and she's going to stay for the whole week!  Originally, we had plans to leave town on a little vacation, but that's not going to work out.  It's spring break for me, and I plan on enjoying the break with a little stay-cation at home...while someone else changes Sadie's diapers, tube feeds her, and entertains her all day.

I am one of those people who wants to always make it as easy as possible when preparing someone to be my substitute.  I was this way when I taught swimming lessons (my boss always praised my instructions when I had to have someone teach my class), I was this way with my classroom (preparing for a sub was always more work than just teaching my classes myself!), and I'm this way with Sadie going to Ryan House.  I mean, they're already dealing with children there who can't talk, eat, walk, etc...why make it harder by leaving them a guessing game???

The biggest thing is preparing them for Sadie's eating schedule.  Because Sadie is tube-fed, and because we no longer use the formula recommended by her doctor, it's important that I obsess about control every ounce of liquid and every calorie that goes into my little girl.  The doctor claims that that formula (you know, the one that is full of artificial sugars and chemical vitamins) is "complete nutrition" so I feel like it's up to me to prove that I can provide my child complete nutrition using real food...even if it goes through the tube.

Usually, we blend up some yummy stuff for Sadie and that lasts her a couple of days before we have to blend up some more stuff.  At home, we mix in some oral feedings too, but for Ryan House, I'm gonna make it as simple as possible and stick with the tube feeds only.  So, how do I make sure she has a week's worth of yummy food without using formula?

Freeze it.

This is the genius idea I came up with this week:

Make Sadie's food like I normally would (usually it's about 32 ounces), pour that blended goodness into a freezer bag with the zip lock top, then lay it flat in the freezer to harden.  Then we'll have 5 or 6 flat freezer bags full of food that they can just take out the night before, put in the fridge to defrost, then pour into her Nalgene we use to hold her tube food for the day.

I figured this was a better idea than sending fresh food and the blender over there!!!

And now I'm off to start blending!!