what's new

I have quite a bit to catch up on.

Emily has had her 3 month post cast check up. That went great! You would never know she was in a body cast for 3 months 3 months ago! Her left hip socket is still very shallow and the ball is much smaller than the right. It's to be expected. We are in the process of getting her a stander. Praying that insurance will cover it.

You can see where the purple arrow is pointing how her left hip socket is a bow not curved in like the right socket. You can also see how small her ball is compaired to her right. When the hip is out of socket the ball does not grown.

In therory, if we can get her in a stander it will help push her femur and ball into her socket and help form her pelvix correctly.

She had a MRI of her brain and also had good news, no new atrophy. Which means her brain has no shrunk any more! Yay!

She had to be sedated with the MRI so we went ahead and had them do the ABR which is a sedated hearing test.

She had tubes in her ears and electrodes taped to her forehead and behind her ears. The result of this was great too! She even said the word NORMAL! I made her reapeat herself! :)

Emily has really been enjoying her iPad. She loves the fireworks app and anything with animal sounds. Her favorite is a kitty. Joe keep teasing that we need to get her a cat because she responds so well to it.

The new medicine, clobazam, is still helping. She has days with more spasms and seizures but her recovery time is so much better. The rescue drugs are working faster, when we need to use them.

The side effects are also minimal.

We went to Riley Children's Hospital to get Emily fit for a wheelchair, stander and car seat. They gave us a new car seat then. It was through the foundation and it is very nice and big! The car seat she was in was getting too short to keep her rear facing much longer. With Emily lack of head control we need to keep her rear facing as long as possible!

Now onto the fun stuff!

Emily loved the swings this time around!

My cute kitty cat!

She got lots of candy!

Me, Emily, Ava, and Angie at Halloween.

Just a reminder, my blog will not show up in your blog feed or on google reader.

stuff and more good things

I love stuff.

 By stuff I mean things people use for therapy, positioning, seating, toys etc etc....

Insurance pays for a very selected amount of "stuff" each year and most of that you have to fight for. If you chose to buy said "stuff" out of pocket and it is labeled for therapy, special needs, or medical it will be incredibly expensive!

So we try to find things that can be turned into therapy use.

Right now Emily's vision is taking off so we are trying to stimulate her in different ways. It seems that she loves lights a lot so after some thinking what we can do.......

viola!!!!

Turn your baby activity gym into a light show!

She even grabbed the lights!

Here is a couple of pics from yesterday when she was holding her head up. She did this for 3 minutes straight!!!!!!!

 

I am so proud of my little girl!!

What kind of "stuff" do you use to make therapy creative?

more updates

Two posts in one day!! AHHH!

Emily is doing much better the past few days. She is finally over the uti and her first TWO teeth have broken through. I thought this girl would never have teeth. She now has two bottom teeth that came one right after the other.

She is still having clusters of spasms and a few seizures daily. The past few days her seizures have been down to 3 or fewer.

So now we know that a uti and teething are seizure triggers for Emily. Now we are dealing with biting. Fun.

Visually, Emily is really progressing. She is seeing so much better and is tracking and following more objects. Used to you would have to introduce something to her from the side and hope it would catch her attention but now we can start closer to mid line.

Another big thing is she is interested in the TV! She does not care for therapy so her PT suggested we turn on cartoons, I laughed to myself because she has never been interested in cartoons before, well she proved me wrong! She loved it and we got through PT without any major melt downs!

A friend gave us some DVDs to try and she loves them!

Here are a couple pics of her watching TV.

She really likes baby Einstein.

Emily and her daddy watching videos on the computer.

I want to get her an ipad so badly. I know she would love it!

We are weaning her topamax slowly and when she is off of that she will only be on phenobarb. We are defiantly seeing more of Emily since we began weaning meds. She is pretty happy but she is very opinionated if she does not like something. Especially when she is tired.

She finally broke the 20 pound mark! She has always been on the small side and now that she is on the ketogenic diet she does not gain weight very quickly. She is small but proportionate.

We did get Emily's bath chair. We decided to go with the Rifton Blue wave bath chair with a tub stand to make it taller when we need it. Emily seems to enjoy it and it supports her so much better.

All of the support straps are movable. We don't use the chest and leg straps because she does not move enough to use them yet. She loves kicking her legs in the water.

We also got her stroller. We decided to go with the Special tomato EIO. I don't have a great picture of it yet. There are many reason we chose it. It holds up to 90lbs and it reclines all the way back so she can sleep. We also got the special tomato soft touch liners to support her better and they can also be removed and used in a chair for more support later.

So far I am very pleased with it. I wish it had a bigger basket under the chair to hold her diaper bag. We carry so much stuff when we go anywhere.

So that is pretty much it. Oh and I turned 30.

Looking forward to some more good days.

off

I don't really want to blog right now but I am making myself.

Things have not been good lately.

Emily's seizures have picked up in spite of everything we are doing.

She has what we think are seizure-free days once or twice every week to two weeks but I am not sure that they are really seizure free.

The past few days have gotten really bad.  She is having so many seizures and we are giving her a lot of meds to TRY and slow them down but they are not working well anymore.

She is weaker than she has ever been and has not been herself in a few days.

She is twitchy and very seizurey looking.

We took her to the ped yesterday just to check labs and urine to make sure it's not something simple like an infection or off labs we are dealing with but they were normal.

I really don't want to go the hospital (especially during cold and flu season) we have oxygen and and a monitor at home and we have been using it lately. She has only needed oxygen once but we are thankful we had it.

We are taking her in to see the neuro the beginning of next week and hopefully we can figure something out.

I want my happy smiling baby back.

slacker

I am a blog slacker! I admit it.

I, sometimes, just get tired of saying the same things..seizures, seizures, seizures....

So since her last hospital admit Emily has been ok. Seizures daily but they are manageable.

We got her home oxygen and oxygen saturation monitor delivered last week. Getting those, hopefully, will keep her out of the hospital more during cold and flu season. The main reason she goes in the hospital is because we have to give her so much medicine to stop her seizures she gets sedated and needs to be monitored. This way we can throw the monitor on her and feel more confident about staying home and avoid a chance at her getting sick from germs in the hospital.

I am not holding my breath but she is SUPPOSED to get shower chair and new medical stroller today. Once I get them I will post pics.

Right now it has been 2 1/2 days since her last seizure. She is still having spasms this whole time but no seizures that I have seen. She even slept last night from 10:30PM-4AM.

We did get to go to church on Sunday. I was nervous because we, along with two other men, we asked to speak on the topic of suffering. So, yea that was hard. In the end I felt good about letting my church family know how we feel. We feel so blessed to have them care so much about us!!

This was also the first time I have let anyone watch Emily at church. During first service my friend, Angie, just set in service and held her so I could see her the whole time. During 2nd service she took her down stairs and said if she needed me she would send someone up to get me. About half way through someone stuck their head in and motioned me to come. When I got down there she was crying so hard and as soon as I took her she stopped. We have been having some separation anxiety issues lately especially when she wants comforted. I hate that others have so much trouble calming her down BUT it is a normal 17 month old behavior :)

I was afraid Emily would just shut down but she did very well with all the sounds and one of our friends, Chasity, even got her to smile. That is a pretty big deal because normally she will only smile for us.

Later that evening we had a visit from Emily's great-aunt Shirley and Emily really enjoyed being loved on and started to fall asleep in her arms without her paci! Emily loves her paci :)

It was a fun but busy day and I am so proud of Emily, she was such a good girl!

She had her cardiology appt yesterday and it went well. She still has a "very tiny" pvo (hole) in her heart but he feels it will be just fine on its own. She also has an innocent murmur because she has false tendons, he described them as like "pumpkin guts" and when the blood flows over them you hear an extra sound. He is actually the only one to ever hear it. So we don't have to go back and see him for 1-2 years!

Yesterday I changed Emily's g-tube! I know this sounds silly but I was very nervous and I made sure Emily's nurse was here but I did it all myself so that I would feel comfortable in the future. I piece of the tab you use to open it broke off, it was still usable but it would have to be changed soon anyway.  It was easy and now I don't worry if I have to do it again.

Sorry for the lack of picture, I need to download them from my camera. I promise more next blog, whenever that will be :)

you know you have a medically fragile child when.....

You turn an old IV pole and a measuring tape into a hair bow holder............

Emily's grandma, Brenda, is making her a hair bow holder but she is accumulating them very quickly and I needed to get them up to where I could see what she had.

Our first home health company sent this pole with her feeding pump and when we had to switch companies they had me mail the pump back since it was so small but they said to keep the pole. We live pretty far out in the country so the company saved money by me keeping the pole instead of paying someone to drive out and pick it up.

I just needed a laugh today.

Oh by the way this is what 3am looks like in the Rollins' house

Cute, but I was wanting the sleeping baby look.

catching up

Guess I need to update this thing huh?

When we left Cleveland Emily's seizure were doing so much better, anywhere from 0-8 is what we saw. I say saw because she has many more that we don't see. Still that is amazing, much better than 40-70/day.

We did not know if it was the new med, increase in another or the steroids. Emily always does really well for a few days after a dose of steroids and yesterday we found out that it was the steroids because yesterday she had 41 seizures and she has already started this morning.

Every night before we go to bed we pray with Emily and we pray that the monster (seizures) will leave her alone, I pray one day I will see her last seizure.

So now that I got the bad stuff out of the way.....

We got our new full time nurse , well she is 4 days/week, and I really like her. I think she will work out great for us. I am so thankful too because we have had a few that I just did not feel comfortable with and now that she is here 4 days and then we have another nurse for Fridays that I really like too I feel like soon I will be able to sleep a little more :) yay!!

I had to get Emily a new bathtub because the one she was using was getting too small for her, it just was not made to hold a baby her size. I am on a few online support groups and they have been so incredibly helpful and I asked them what they did for a tub when their kids outgrew the baby bath but could not set up to use the big tub. Some one suggested a pillow like "bathtub" called safer bather. So we got it and it's amazing! I wish that I would have known about this before I had her. It is great for newborns and it is perfect for Emily. She really likes it too because she can stretch out. It holds her perfectly and it tapers slightly so that when she gets bigger it can just go under her back to support her head.