Baclofen Pump (better late than never)

On Wednesday June 23, 2010 Grant had a baclofen pump placed. Baclofen is a muscle relaxant that he has been taking for quite a while now to help with his spasticity. A couple years ago, it was proposed by his rehab doctors to have a baclofen pump placed to help by delivering a continuous dosage throughout the day. He had a trial test done in May of 2008, but it took me 2 years to get up the courage to put him through this surgery. His muscles and tendons have been getting tighter and tighter, and because of that his orthopedic surgeon wanted to do a bunch of tendon releases. That made me even more nervous. I didn't want my perfect little boy sliced and diced all over his little body. So I made the decision to suck it up and get the baclofen pump placed in hopes that with some good PT we can loosen his muscles and tendons to prevent/postpone any tendon releases.
The surgery went really good. He has a large incision from his belly button and out to his right side about 4 inches, and another incision on his back that is about 1-1 1/2 inches long. Since he is so skinny, you can see the pump very clearly. It looks like a hockey puck was implanted in his stomach. We were in the hospital for 2 days and then got to come home. On the way home is when the problems started. He threw up 3 times on the way home and continued throwing up multiple times each day until we took him back to the ER on Sunday afternoon. By that time he had become pretty dehydrated. Once we were finally seen (2 1/2 hours to even have a dr. look at him) they ran a bunch of tests and started him on some fluids. It was determined that he just picked up a stomach bug when we were in the hospital and was nothing related to the pump itself. We spent another night in the hospital getting more fluids and then came home the next day. I can only imagine the pain he was experiencing with throwing up while fresh out of surgery with two sets of sutures. He was a trooper though and was fairly content as long as he had some ibuprofen in him.

He's so scrawny that you can see the catheter that runs from the pump to his spinal column.

He was supposed to wear the abdominal binder for 6-8 weeks after surgery to help keep the pump in place. I have continued to keep it on him. He tends to get a CSF bulge on his spine if he's upright too much. The binder helps to keep that down, and helps to reduce the pump bulging out too much.

The rest of the summer we made regular trips up to Primary's to have his pump adjusted. They started him at a low dose and then slowly increased the dose every week. Luckily for us, they can set the pump to automatically adjust after a week, so we didn't have to drive up each week, just every other week. It has been a slow process and it hasn't been until his last appointment at the end of August that I finally started to see some differences. We are getting close to an ideal dose. Now we start with the intense PT. :)
Since we would be spending so much time at the hospital, and I would be dragging the girls with me, I decided to try to make it a fun experience at the same time. Each time we went up, we planned some sort of activity to look forward to after the doctor appointment. This made the wait time seem much more bearable. While we were there waiting, we did try to have as much fun as possible. Since it is a children's hospital, they do have a good assortment of toys to keep the kids busy.

Mikkele drew on the chalk boards a lot. Everyone got to have their picture taken by their name art.

We met up with my friend Michelle at the Gateway splash pad.

We went to lunch....

We visited an old favorite park....

We went to the aquarium....

We also stopped and visited with other friends and family. It wasn't the most ideal way to spend our days in the summer, but we made the best of it and still had a great time!

15 Months Old

Hallie is 15 months old today. I've realized some things today as I'm thinking about the last month with her.
#1-I haven't blogged since her 14 month post. Yes I know, I'm a slacker...more things will be coming soon.
#2-I really need to start using my regular camera! My phone is great for the most part, but I don't have ONE picture on my regular camera from this last month. I'm gonna go ahead and blame Mikkele on that one though. She stole my rechargable batteries from my camera and put them into the Wii remotes. So there's my excuse :) So don't mind all the fuzzy, poor quality pictures.
#3-My baby is growing up! And way too fast for that matter!

Carrying around sister's purse.

I just have to say that I was quite proud of teaching my child this....

Since I can be found doing the same thing quite regularly :) But now it has turned into a regular occurrence. Doesn't she know we're supposed to save it for Grandma Roberts to see?

She loved the cherry tomatoes from Grandpa Jones' garden!


Enjoying a poo cookie. We make these cookies all the time since they don't have eggs in them. She loves them!

Our ward had a humanitarian fundraiser that included a huge yard sale. We lucked out and were able to score this fun little slide. She has had a blast with it.

Other fun tidbits:
*She loves to be outside and go on walks. Which is why the little slide is inside. I didn't want to give her another reason to want to be outside all the time.
*She loves bath time, but hates the water on her head to wash out the soap. She will help rub her belly when you wash her body.
*She knows that after bath time we put on lotion, so she will rub her hands together like she's reminding me that we need to put it on.
*She helps put her clothes on or take them off.
*All 4 of her molars have broken through. Unfortunately only 1 of the 4 are completely through. So she is still really fussy. Hopefully we'll be done with the molars soon!
*Her appetite has picked back up. She's still a little picky on some foods, but is doing better. I am also trying to introduce her to more options. Her new favorite...grapes!
*She started saying thank you. It's more like ta-tu, but super cute! She'll sign for more and please but then vocalizes the thank you.
*She is a tease and knows when she is doing something naughty!
*She still gets into everything! Her favs are the trash (which is kept on the counter after it's half way full now) the toilet...why can't kids keep the door closed? And the pantry.
*She likes to help do chores....or I guess I should say make more chores for me by following behind me and undoing everything I've just done.

*Still napping 2 times a day for the most part. Takes a better morning nap than afternoon nap. I would like to move it to one long nap in the afternoon, but she is so fussy about 2 hours after she wakes up that she (and I) need her to take that morning nap!

*She's been a little naughty with her night time sleeping lately. Waking up once or twice a night. Hope to get that under control here soon!
*11:00am church time is a little rough. Only 3 more months until nursery!!!!
*We're working on her animal sounds and names still. All animals are still dodo's. One day...one day.
*She likes the cell phone. She has plenty of old ones that she can play with, but for some reason she knows they're fake and still goes for the real one all the time! It's funny to watch her when she does get a hold of it. She hold it behind her ear and will just sit and jabber for a long time. I guess I do to much of that :)

Happy 15 month birthday Hal!
We love you!

14 months old

This last month with Hallie has been a little trying. Don't let this cute face fool you. She's has been quite the little monster. (I really hope she doesn't start thinking that's her name.) It's that cute face that keeps her from being shipped off to live some place else.

Some examples of her monsterish ways....
(Sorry for the poor video quality and for those videos that are sideways..they were all taken on my phone.)

Ok...this one is only semi monsterish. Mostly cute. Helping herself to some cereal out of the pantry. One of the reasons we have to make sure all doors in the house are closed.

I'm going to blame all of the crankiness on her top two molars coming in, which makes 10 teeth...half way done with the teething! I hope the other 2 molars can come quickly so we can take a break with the whole teething thing for a bit before her eye teeth come in. I did take her into the doctor a few days before her 14 month birthday to see if there was more going on than just her teeth since she had been so cranky. He said everything else checked out ok. I wish it was more than just the teeth so we could treat it, but I guess not. At the doctor appointment she weighed 25.8lbs! I really thought once she started walking she would stall out in the weight gain department for awhile. I guess not. She only has about 2 more pounds and then she catches Grant. LOL!

Now I really haven't been trying to pull my hair out the whole last month. There have been some really good times with her too. Don't let all my previous complaining fool you. She is still super cute, super funny, and super smart. That girl is learning new things every day! She will just out of the blue start doing things. Like this for example...

Or this....

She loves to give kisses too. But it has to be on her terms. She doesn't do it much on command. She's a little stubborn that way. Grant is one of her favorite kissing targets. Can you blame her though? He's lots of fun to smooch on.She's a silly little girl and does things that make us laugh all the time. Whether it's a sound or an action if we laugh then she does it over and over again. She'll even laugh at herself once the trick is over and it's time to laugh. Silly girl.

She likes to honk noses. If you are holding her, there's a good chance she will honk your nose. If you say honk when she does it, it even gives her more excitement.She has also been cracking us up with her dancing. She loves to dance! Any time music is playing or someone is singing, she starts to dance. It is so funny. This video shows a few of her moves. She's strapped in her car seat, but just imagine how groovy she can get when she's not strapped in!

We find her reading books alot. She loves to look at books! Especially books with animals in them. She thinks most animals are Dodo's (dogs). She has the sound for dogs and horses down, well in her own little way :) We continue to work with the others as well.

(And if you're wondering what that large plastic thing is that she is holding with the books, it is my straight edge ruler for my rotary cutter. I've been doing a bunch of sewing crafts lately. She thinks it's fun to play with it.)

Her vocabulary hasn't grown a ton this last month, but she says nini for night night when she's tired or we're getting her ready for bed. She'll also find her favorite blanket and wrap up in it or lay on it and say nini. It's pretty cute. She says hi when people come over or when Jeremy gets home from work. She has gotten better at the other words/sounds that she's been able to say for a while now.
She's been a little picky eater this last month. I don't know if it's because of her teeth bothering her, or if her tastes are changing, but she's not loving some of the same things she used to, mostly her vegetables...go figure! Her all time favorite is still Vienna Sausages though!

We got her some cute sunglasses in the dollar section at Target. Love their dollar section! She looks pretty stinking cute it them. When she tries to put them on, she puts them around her neck. It's pretty funny.

Her hair is long enough for pig tails now! It's still not very thick, but it works and is super cute. She reminds me of Boo on Monsters Inc. when we do the piggies.One of my favorite times of day with her is when she is sleeping! Ahhh...I need a break from her craziness a few times a day! She keeps us on our toes. So nap time and bed time are when we try to get things done around the house. If I try to do things while she's awake, she is just too much of a little helper. In this picture, she had fallen asleep in my arms at church (which she never does). It had gotten really hot holding her, so I laid her on my lap. As I did so she took her cute, chubby little arms and folded them under her head. It was really cute! So glad I just happened to have my camera in the diaper bay that day.

Happy 14 month old birthday baby girl. Even though you make your mama crazy sometimes, I still love you to pieces!

4th of July

This year the 4th of July was on a Sunday. Since we live in Utah and the state basically closes down on Sunday, the 4th was celebrated on Friday, Saturday, and Monday. It made for a really long holiday weekend with a lot of activities.

On Friday we went to the Owlz game with Holly, Ryan, Dillon, Connor, and Mikkele brought her friend Shelby. We have gone to this game with Holly and Ryan quite a few times around the 4th. It's kind of our tradition. We like to go to the game right around the 4th or the 24th because they have fireworks after the game. The Owlz won, which was good. The kids had fun and the adults enjoyed the nice summer evening.

Jeremy and Hallie relaxing watching the game.

The kids (including Aunt Holly) liked to chase down the mascots and take pictures. They have 2 mascots...Hoot and Holly. Our Holly thought it was fun that they shared the same name. They look similar too, don'tcha think? j/k

Connor, Dillon, and Holly

Hallie, Shelby, and Holly

I don't know how we missed a picture with Mikkele and Holly. I think she was the camera man.

Holly got a hold of my phone and snapped some pics. In true Roberts form, I had to make a face when she took my pic.

Connor saying hi to Grant. It got a little chilly once the sun went down. So Grant was all wrapped up in a blanket.

And of course the fireworks after the game. They had a pretty good firework show. The kids enjoyed it. Grant loves the loud sounds they make. I thought Hallie would be scared of them because she doesn't like loud sounds. But surprisingly enough, she was fascinated by them.

Saturday we just hung out here at our house and did our own little BBQ. Jeremy had done a double fatal accident that morning and doesn't do well after those. So we just took it easy the rest of the day. I decided to throw together a little skirt for Hallie for church the next day. It turned out really cute if I do say so myself. :)Sunday we went to church. All of us were sporting a patriotic outfit to show our gratitude to our country. On the way home from church I found a neighbor's yard that had a flag right in the middle of a nicely groomed flowerbed, and just happened to have my camera in the diaper bag. So we snapped a few pics. As I took a couple of them, the wind picked up and so you can see the flag really well. It was awesome.

Not to brag...but I have some dang cute kids!!!

I had Hal model her outfit a little more when we got home. She's not a very cooperative picture taker. She kept walking towards me cause she wanted the camera. But I think you get the picture of how cute she looks in the high quality skirt I made her. ;)

Sunday evening we went over to Jeremy's parents house for dinner. We had a yummy Mexican dinner. I guess Mexican food isn't the most patriotic food, but it was still really good even if it was from the wrong country. LOL. Later in the evening we lit a few fireworks. Hallie wanted to hold a sparkler, but not by the right end. She kept wanting to touch the part that was burning. She's still too young to understand that it will burn her. It was fun watching her explore different activities. She jumped every time there was a loud boom, but always wanted more.

We hope everyone had a fun and safe holiday weekend. We are thankful for those that have fought for our freedom. Especially my Grandpa Jones and my brother Aaron. We are grateful to live in a country where we have so many freedoms.