Sunday, August 28, 2011

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!!

Thursday, August 11, 2011

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.

Wednesday, August 10, 2011

18 mos check up

Sadie saw Dr. Wendy today and I think this was our first well baby appointment that didn't involve ANY screaming! We had 16 mos of car screaming and I am SO GLAD we're done with that. Now when we go places I think Sadie actually enjoys being in the car.

Dr. Wendy continues to be impressed with Sadie. Remember, we first met Dr. Wendy in the NICU, so she REALLY knows how far Sadie has come. She looked at Sadie's G-tube and was very impressed with how healthy it looks. She said it might be the best one she's ever seen so fresh. That makes me happy. The thing about Sadie that always amazes me is how healthy she is. She has been sick maybe twice, she heals up from cuts or scrapes and things. She never gets bruises. She is just really healthy.

Sadie got weighed and measured and she's back on her original weight curve, the one she was on when she was born. So, we're really happy about that! And she's in the 75th percentile for height!! So, those of you who comment on how tall she is all the time? You're right! She is long and skinny. Her head is not really growing very fast, but it is making its own curve that is paralleling the normal curve...it's just WAY below the charts. It's okay though, we're happy with the head we got and we love every LITTLE bit of it!!

We talked about all the things Sadie is doing. How she can almost sit, and she can get her (left) hand to her mouth. I told her that she is very good at communicating, and that when her mouth doesn't hurt, she can eat 5-6 oz of food (even though she still won't drink)! She sleeps all night, and even though she hasn't since we've been home from the hospital, she has been pretty good about taking naps. She has gotten all her teeth except her fangs (top and bottom) in the last 6 months, so that's been hard...but she looks like such a big girl.

We asked for a prescription to attend PT twice a week, because I feel like Sadie is at a place where she can finally really participate and benefit from therapies. Dr. Wendy was glad to write that. We also talked a little about a Kid-Cart, which is like a wheelchair stroller. I think that's going to be our next big piece of equipment.

Dr. Wendy said as long as GI was keeping an eye on her nutrition and tube and we didn't feel like we needed anything, she'd see us again when Sadie's 2!! Can you believe Sadie's going to be 2 in less than a year?! It seems like just yesterday when we were coming home from the hospital with this bundle that wasn't supposed to make it even a couple of days. Yet, so much has happened and we've come such a long ways that now we're facing 2. Wow.

Sunday, August 7, 2011

More 365 project pictures!

bath time on 365 Project
Every night after Sadie's bath, we wrap her up in a hoodie towel and snuggle on her. Sometimes she likes it, sometimes she doesn't...but she ALWAYS looks cute when we do it!
Belly Shot #2 on 365 Project
This was taken the morning we left for the hospital for surgery!
G-tube Pad on 365 Project
Sadie showing off her new button and its pretty pad to keep it healthy. She's still a little sore, and we have to be careful of her belly...but I think it's her teeth that are REALLY bothering her!
Occupational Therapy on 365 Project
Sadie and Jessica played with the ipad during OT this week. I think this is the only therapy Sadie had this week.
Mohawk on 365 Project
I always comb out Sadie's tangles in the tub, even if I don't wash her hair. She has such a fantastic mullet that she could have the ponytail going on on the back with a faux-hawk in the front if we wanted!! It's fun to play with when it's wet!
Food & Wine Magazine on 365 Project
Daddy likes to read Food & Wine magazine because sometimes it has good recipes in it that he wants me to try. Last night, Sadie was "reading" it with him!! He said she really liked the picture of the mom and daughter making cookies together with the KitchenAid mixer...she especially liked it when Daddy explained to her what was going on in the picture. Maybe someday Sadie and I will make cookies together.

If you're interested in seeing all the pictures in my project 365, you can visit this link:
Christie's 365 project and see my daily picture of Sadie.

Wednesday, August 3, 2011

Sadie's new G-button

Monday morning, bright and early, our little family headed to Phoenix Children's Hospital (PCH) for our baby to undergo a Gastrostomy. This is the formal name for G-tube surgery. She's had her NG tube (in her nose) for 10 weeks and it's been a really good thing for her. Just days after getting her NG tube, she stopped screaming all day, started sleeping all day and napping, and was just all-around a happier kid. Plus, in that 10 weeks that she's had it, she's gone from barely 18lbs to over 23lbs!! But there are negatives that came with the NG tube as well...first of all, we had to tape it to her face, so it was unsightly. She was learning to grab it and pull (I think because she got immediate feedback when this happened), so we were having to replace it almost daily. Because it went in through her nose and down the back of her throat, she sneezed a lot, gagged when she ate, and if she threw up, it just made it worse because the tube would come up with all her food! Needless to say, we were ready for the G-tube.

To do the surgery, from what the doctor and nurses told me, they put a tube down her throat with a scope, then they go in through her belly button to inflate her stomach and stretch the skin, a little incision is made (it might be more like a piercing) and the tube is placed. On top of the tube, on the outside of her belly is a little valve called a "button" and underneath, on the inside of her tummy, is a balloon that inflates with water to hold the tube in place. The picture below is what one looks like "uninstalled" so you can get a better idea.

So, we went in early Monday morning, surgery was scheduled for 9:30, we had to check in at 7:30, Sadie had had only clear liquids since 12:30, and NOTHING since about 5:30...and we sat. And we waited. And we waited some more. I think we waited in Pre-Op for an hour and a half. Luckily we had the ipad, so Sadie was able to watch Sesame Street while we waited and that made her happy.

When the doctor finally came in, he asked if we had any questions, he signed a bunch of papers, and he marked on her belly where he thought was good placement and he initialed it to make it official.
The surgery took less than an hour. We walked out of Pre-Op right at 10:00 and were called back to recovery just before 11:00, and we noticed that they tend to wait 10-15 minutes once they've had the patients in recovery before they call the family. When we saw her she was still asleep, we peeked at her belly and were actually surprised at how small the button was. I don't know what Brian was expecting to see, but it was probably similar to what I thought: oozing bandages indicating that she'd be really sore for days. But it wasn't like that at all.


She sort of woke up a couple of times, just opened her eyes and looked around. We kissed her and talked to her and let her know we were there and we love her, and then she'd close her eyes again and go back to sleep. We had to sit there until they had a room for us, which didn't take too long and before we knew it, we were off to the 3rd floor.

I had asked that when we get to our room there be a bed there instead of a crib so that I can sleep with Sadie, but we had been quicker than the guy bringing the bed, so we transferred Sadie to the crib from the surgery bed for the time being. That really woke her up. Then like in 2 minutes the guy brought the bed so we had to switch her again. This time I had to hold her for a little longer while they rearranged things, and I think I irritated her button, because it was bleeding when we put her back down. And then the pain kicked in.
She was so sad. I don't think I've ever seen her in pain like that before. They had to give her Tylenol as a suppository because nothing was aloud in her stomach. She was receiving IV fluids to keep her hydrated and that was it. The Tylenol seemed to work and she slept some more throughout the day.

However, she didn't sleep much during the night. I think part of it was being in a different environment, but a lot of it was the little boy we were sharing a room with. He didn't feel well and screamed all night long. Plus then his machines would beep when he'd get upset. It was annoying and sad and exhausting. But Sadie hardly complained. She was calm and the next morning actually pretty happy.

The nurse told us we could try to feed her orally the next morning, but Sadie's stomach couldn't really handle it, so she threw it all up. Instead we started her on a slow drip through her new tube of just Pedialyte. She did better with that. And from that we graduated up to her regular Pediasure formula. Once she did that okay, they let us go.

We were home by 5:15 and Sadie and I were really glad to be here. While Daddy made dinner, we took a bath and washed the hospital stink off. We decided to have Sadie sleep with us because we didn't know how much maintenance she'd be in the night if she was in pain, or if her tummy didn't tolerate her night feed. Sadie and I went to bed around 8:00 and we both slept hard. I got up around 6:00, but it's 7:30 now and she's still sleeping. I'm really glad we didn't have to even give her Tylenol in the night or anything. She was awesome. And now begins our life as a tubie.

PS. that pretty thing around her tube is one of my homemade G-tube pads. It's to keep the gunk off and keep her skin dry, and it's MUCH prettier than gauze! You can learn more about them or how to order some at the top of the page by clicking on the different tabs.