Facebook...

Sometimes I find myself living vicariously through facebook. Day in and day out I deal with puke, screaming, non-napping, rocking, more puke, worrying about what hurts, sleep deprivation, work, money, more puke, doctors, more doctors, therapies, and stressful car rides. Sometimes I just want my life and my kid to be normal!!!

So, I get on facebook and I look through the pictures of all my friends with beautiful happy children. I see pictures of them at the pumpkin patch, at the pool, eating dinner in a high chair, and falling asleep in the car. And I imagine myself with a kid like that. And I think about what it would be like to be this person, someone who's biggest complaint is that their child only will take a 1 hour nap. What would that be like?!

I see these people so happy, enjoying life. They don't have to worry about g-tubes and adequate nutrition/hydration (at least the way I do) or wheelchair clinics or what she could be screaming about this time. And I wonder if they realize how good they have it.

They look forward to potty training and kindergarten and play dates and all this is normal for them. It should be normal for them. They are running the race which is life, and hoping that they finish well.

But our race is part of the special olympics, and it's quite a bit harder for us to get to the finish line.

And instead of looking forward to walking and talking and eating with a fork, we're just hoping sometimes that we make it through the day. And we need a lot more cheering in order to go a lot shorter distance.

Sometimes it's hard to realize that I live in a very different world than most people, because Sadie has special needs. Even amongst other parents of children with special needs I can feel isolated because every kid is so different. Sometimes I feel like I live on an island, one that people can't really visit, they can only reach me by Skype. And sometimes I like being alone on this island, it's peaceful and nobody bothers me. But sometimes I just want a friend. Sometimes I want someone to give me a hug or hold my hand. And you can't do that through Skype.

So, I go to facebook and I live vicariously through my friends and I lose myself in some fantasy where my baby was born and everything went according to plan and she was beautiful and happy and crawled and walked and starting talking all on time like she was supposed to. And I imagine having another and another and going on vacations together when they got older and being surrounded by such a wonderful family for the rest of my life...like they will.

Then I realize that if we make it through today, that deserves an applause from the crowd that is cheering us on, and the next day we might need a standing ovation from the crowd just to get us to lunch time. And that no matter how many pictures I look at or how hard I wish, it's always going to be like this for us.

Good thing there's always facebook.

Miracles in Motion 2011

Some of you might remember that last year about this time I was beginning to train to run a half marathon held the weekend before Sadie's first birthday. You might also remember that it was a fundraiser for the children's hospital. Well, this year I won't be running, but Sadie will still be participating in the fundraiser by being an honor patient. Those who are choosing to raise money and run the race all have an honor patient that they are "running for." This basically hooks our family up with 2 runners, who use Sadie's story for fundraising and Sadie's life as inspiration as they train. It's a really neat way to make the fundraiser personal for those who are running and for those who are giving.

So, yesterday we attended the kick-off party where all the runners and honor patients come together and get paired up. It was at the Phoenix Zoo, so we not only got free lunch, but we got free admission to the zoo to enjoy after the event. However, we weren't lucky enough to stay for the entire event, let alone the zoo afterward.

We got there early and for lunch we sat with a dad and his two adorable little blonde girls. He is running the full marathon, and I'm sure the girls will be excellent cheer leaders. The event started around noon, which was a little risky since that is about nap time. Let me remind you that Sadie doesn't just fall asleep wherever she is when she's tired enough, like normal kids do. She has to be PUT to sleep, which requires a pacifier and often some kind of bed...sometimes holding her will work. When the screaming started, we managed to get her to sleep...for 4 minutes. There was a lot of noise in that room and it was hard for her to stay asleep.

At about 1:30 the program started and the woman who heads this fundraiser got up and started speaking and thanking everyone for being involved in this event. Then she called all of the honor patients up front to choose their runners (by picking names out of basket). Sadie was completely melting down at this point, we couldn't be up front for this part, I had to take her back to Brian, and then I did something that a year ago I never would have done. I pushed my way to the front of the line (from the very back) and told the lady in charge that we needed to go first and I am really sorry for butting my way in, but we have to go home NOW! Luckily, everyone understood, and we picked our names and got out of there.

As we were walking toward the exit of the zoo, I felt bad that we barely got to meet our runners. It would have been nice to spend some time with them while we enjoyed the zoo with Sadie. I was so stressed out and frazzled that I barely remember their names because I was so occupied with getting home. I did manage to give them cards for our blog, and I hope they're both reading this. Please email me so we can get together and you can spend some time with Sadie when she's happy!!

Sadie screamed all the way home, and we when got her out of the car, there was so much snot it was dripping off her chin!!! It took probably 20 minutes just to get her to calm down and go to sleep. She was so tired that it hurt, poor girl.

We're still looking forward to teething being over, Sadie being older and more emotionally stable, and being able to enjoy places like the zoo. I hope that day comes eventually. We are also looking forward to cheering on our runners and celebrating with them at the finish line!

If you'd like more information about the Phoenix Children's Hospital Miracles in Motion Marathon training program, please visit this link. PCH Miracles in Motion. And if you'd like to give, please stay tuned and I will post our runners' fundraising websites soon. Thanks

Update on GI

We had an appointment with our gastroenterologist (GI doctor) today. I really like that he supports me and my efforts to give Sadie the best and most natural nutrition available. He understands that I would rather give her whole foods than formula, and he sympathizes with me in wanting to have her be medicine free. However, I think he might think I'm a little crazy too! haha

It's funny that I even have to bring Sadie to these appointments. It seems like we'd accomplish so much more without her there to scream while we're talking and be such a distraction! I know, I know, they have to weigh her, and the doctor wants to physically see her and make sure she looks healthy. Plus this is the first time he'd seen her since she's had her G-tube placed. I also like this doctor because he is so positive. The first thing he said when he walked in the room was "Wow! Her weight looks great!" He told me that Sadie is at her ideal weight for her height. I told him I think she got her Daddy's metabolism, so she'll probably be at the ideal weight for her height her entire life! (lucky ducks)

We also met with a nutritionist at this same appointment, and after some discussion about blenderized diets and oral feedings, she suggested a new kind of formula. It's called Nestle Compleat. A friend of mine had recently told me about this formula, and I was going to ask to be switched, so it was great that she suggested it first! Basically this is food-based formula (as opposed to the synthetic stuff we're giving Sadie now) and it will still provide her with complete nutrition. It's like a blenderized diet without having to do all the work myself.

We had a long conversation about Sadie's oral feedings also. There is a calorie goal Sadie needs to reach everyday (750-800) and a liquids goal she needs to reach everyday (1000mL), which are both met when she is completely tube fed. However, when she gets food by mouth, these things are thrown off a little. When I feed her by mouth, I always try to pump through her tube at least 3oz of water (90mL), but I can't control her calories. And the nutritionist tried to tell me I still needed to make sure Sadie's getting enough calories and I told her that it's unreasonable to expect me to do this. I can control her fluids intake as much as possible and pretty much guarantee 1000mLs a day. But if she's eating by mouth 5-7oz of food, I'm not going to also give her a feed to supplement...I'm just going to call it good and move on. They both said, just keep encouraging food by mouth, do your best, and if when she comes back she's not gaining weight like she should, we can discuss it then. I was satisfied with that.

A vitamin was also recommended for Sadie, which was another thing I was going to ask about. But what was recommended is made by Enfamil, which I don't totally trust. I plan on finding something comparable and starting her on that as soon as possible.

Then we talked about reflux. I have been doing some research and learned that aloe vera tablets/concentrate can act as a natural proton pump inhibitor (ppi), which is what Sadie takes prevacid for. Basically a ppi reduces the production of acid made in the stomach, which then controls the amount that travels back up through Sadie's esophagus, causing the reflux spit up and probably some burning. I found aloe vera concentrate at the store where we shop, and I bought some, but I haven't started it yet. It is advertised on the bottle though that it is used for digestion and upset tummies, so that is encouraging. I mentioned this to the doctor and the nutritionist and they basically laughed in my face. So, I told the doctor (in not these exact words) basically that I would like some information on how to wean Sadie off of the prevacid because we're going to give the aloe vera a try. And if it doesn't work, fine, but at least we tried. He explained to me how to wean her and then said he'd like to do some more research on aloe vera. He understands that I am mom and what I say goes, he's just a doctor and I will consider what he has to say, but I may not take his advice, and I appreciate that. But I really really really hope it works! The good thing about testing the aloe vera is that I can't hurt Sadie in the process, it's not like medicine where I can OD.

Overall we had a good GI visit and everything seems good. We'll wait another 6-8 weeks and we'll trek back in there to give him our aloe vera experiment results!! In the meantime we're going to pray and hope that those last teeth break through and that Sadie continues to eat by mouth. And we're going to start giving her more food-based nutrition!

Everything I need to know...

I am part of a special needs mommy group, and mostly we talk on facebook. Recently I asked them to contribute to the following conversation...

Everything I need to know in life, I learned from my child with special needs...

*Sleep deprivation won't kill you...it'll just make you very tired.

*Sometimes what seems like a step backwards is really just the wind-up that propels you forward at a greater speed.

*Things are never as bad as they seem.

*Out of small things, come great things.

*If I worked as hard as my child does just to get dressed, I could be President!

*Everyday is a precious day.

*God is good...all the time.

*Live life to the fullest and squeeze your little miracle everyday.

*All things work together for good, even in the very hardest times.

*Laugh often, love much, and cherish everything.

*Do all that you can...and then do the rest tomorrow.

*Just because a doctor says they can't do it doesn't mean they won't do it anyway!

*No matter how isolated you feel, you're never really alone.

*We learn more from our children than we will every teach them.

*Love covers a multitude of junk.

*Take time to process what you are going to do, and give time to others who need that processing time.

*A smile is worth a thousand words.

*Vomit totally comes out in the wash.

*Mommies are chosen for this journey, not burdened with it.

Long time no post...

I know I know...where have we been? Well, let me tell you about my crazy life this month.

August 1, Sadie had g-tube surgery, then 2 days later school started. It was a little bit crazy because when you teach online school, if students are new, there is a huge learning curve. People have to get used to the system, their new schedule, meeting all their teachers, and taking care of all their orientation courses. Granted, it would have been even more hectic if I was in a classroom and students were showing up bright and early Wednesday morning. So, I sat in our hospital room making phone calls welcoming my homeroom students to school and reminding them where to start on Wednesday.

Once school started it was like a whirlwind for 2 weeks. Supposedly I am working part time this year, but for those first 2 or 3 weeks, I was working full time trying to keep up with everything. I teach freshman so they have a lot of questions. They do a lot of things wrong over and over so I have to continually remind them how to do things correctly. And for that first week I answered over 30 emails from kids and parents each day. It was exhausting.

And to top it all off we have no respite care, so I'm watching Sadie at the same time...and Sadie isn't napping, she's puking up her feeds, she won't eat anything by mouth, her teething is big ouchies again, etc.

Meanwhile I have posted an ad on a church website (this church is large enough that it actually has a classified section!) for respite care. And I got a call. And the woman came to visit us and interview. And then we were going to hire her. And then she backed out. Luckily I got another call the next week.

Then, the weekend after surgery I started to feel sick. I woke up and I felt like my glands were starting to swell...you know, like right before you get sick. But I never got sick. Instead I got headaches and my gland continued to swell and become more painful. Wednesday, after taking Sadie to therapy and Dr. Wendy, I came home with a headache. By Thursday, my ear started feeling plugged, so I wondered if it was an ear infection. I had Brian pour hydrogen peroxide in my ear, which felt like a million tiny bugs crawling around in there. But after 3 or 4 times, it didn't fizz anymore, so whatever was in there we had killed. However, the pain in my neck wasn't getting any better.

And it was weird. It wasn't like a swollen gland when you get sick right up under your chin, it was down closer to my artery, where I would take my pulse, and it was only on one side. It just kept getting worse and worse, so Sunday I finally went to urgent care. The doctor there put me on antibiotics and I came home with hopes of feeling better soon...but I didn't feel better soon.

It gets better. Brian has had to leave town every week this month for work. So, I was taking care of Sadie all by myself during the day and at night. And I wasn't feeling well. In fact, I was feeling worse! I ended up back at urgent care the following Sunday. This time the doctor looked more closely at me and told me I'm not showing signs of anything serious and it's probably just a case of needing different antibiotics. But, he said I need to follow up with my primary care doctor (which I don't really have) just in case it doesn't get better.

All the while, I hired a new girl to help with respite, and she's coming all day Tuesdays and Thursdays so I can work. She is really great. She has quite a bit of experience with babies and with children/adults with special needs. And she has a good heart and she's so sweet. She has been a huge blessing for me.

So now Brian has one more week to be gone. I am finally feeling better. And respite is consistent and reliable...things are looking up and I can get back on the blog train!!

18 mos portraits

The Orthopaedist

Today we saw an orthopaedist. We were told that we had to see one in order for the state to address any issues that come up with Sadie's CP. And it's good. We need to see someone probably on a regular basis. We did see someone a year ago and he x-rayed Sadie's hips. At that time we were going to keep an eye on the left one because it was slightly sublaxated. We expected more X-rays today, but we also expected to see that Sadie's hip had gotten better. We were wrong...it's gotten worse.

So, what this means is that her hips is slowly coming out of its socket. When babies are born, their hips aren't totally formed yet. Their joints rely on movement and pressure to fully put that ball in its socket. Part of this is sitting, part is being able to put their feet in their mouth, and part is being able to spread their legs...this is what Sadie can't do. She used to be so tight it hurt to wrap her legs around me when I held her on my lap. But, she can do that now, and she's much looser in her hips, which is why we thought it'd be better. What is happening is that since she's not reinforcing that ball to stay in its socket by spreading her knees apart, the socket is becoming shallow and eventually the ball will dislocate.

The doctor wants to be really aggressive about this and went straight to surgery where he would cut her adductor tendons to release those hips and give her more mobility through her legs. But he also said it wasn't guaranteed to fix the problem. And he said he'd be okay with waiting 6 months and looking at it again.

We asked a lot of questions. We don't want to inhibit even the SMALLEST chance of her ever walking, or even crawling. He told us based on his assessment of her basic reflexes, she has a VERY slim chance of being "independently mobile." I looked him straight in the face and told him we were told the same thing about her breathing and sustaining life. He understood and said he was in the business of providing hope, but he also wants us to set realistic goals for her.

We asked if there is any way this would correct itself. He told us that we needed to start stretching those adductors and working on getting her legs apart. He said she is tight, but it's weird that her hips and legs are loose. Thank you Michelle and your Movement Lessons for that! We will see her again in October and hopefully she can work on those adductors. We will also start stretching them at home and in her other therapies. I have a feeling that if she could comfortably spread her legs apart, she might be able to sit better...or at all.

So, we came to the conclusion that we'll see him again in 6 mos. We're going to work on those adductors in these next 6 mos and do everything we can to avoid surgery, but she's growing, and as her bones get longer, if her muscles can't keep up, who knows where we'll be. Surgery may eventually be inevitable. But the doctor did promise that he would not recommend any surgery that might prevent her from ever walking someday. I appreciated that because I refuse to lose hope on that.

But we also don't want that hip to dislocate because that could be really painful. So, keep praying for Sadie. She has some unique challenges because of her inability to move and use her body like you and I do. And it seems like this is a pretty common CP side effect, and we're in good hands at PCH, so I'm not worried. I just don't ever want my baby to be in pain.