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.

freedom

Emily is still very stiff and tight in her legs. Especially her left leg. She had her first PT session this morning and to say it was rough was an understatement.

It's just going to take time and lots of stretching.

I have talked about Emily's waterwaybabies pool and neck ring before but I want to talk about it again.

It's that great!

We put Emily in it yesterday and today to help with her leg stiffness and she is loving it!



Emily in her polka dot bikini



As soon as she hits the water she starts moving. I don't think she stopped at all and she was in it for an hour each time!

I took a close up picture so that everyone can see it is not strangling her. It is like if you were in the pool and you rested your chin on a float. You are weightless so it is not pulling on her head at all.

Her is a side view of the pool. I love seeing my girl standing, even if she looks like Captain Morgan right now ;)

She puts her right foot on the floor and pushes.

The smile says it all!

I am so thankful Emily's great-aunt Shirley bought her this!

She feels so free. Emily is always being held by something, us, her nurse, a brace, a pillow, or some type of chair.

Water therapy is the only time she is free to move how she wants to move.

When it's not 175 degrees outside we are going to take her swimming in a big pool with it. Then she can really move! :)



New cast!

Emily did so well after her last hip surgery!

She did not even cry when she woke up from anesthesia. She was happy and smiling from that moment on.

I swear you would never know she was under for over an hour.

We checked in the hospital at 10:30 and were on our way home at 2:30.

The dr said her hip "looked and felt like a normal functioning hip" YAY!!



Pre-op-Happy girl!



The surgeon said her skin looked great and had no redness or breakdown. Score one for mom! :)

The cast was also very clean, thanks to the tip from another mom about lining her cast in duct tape.

We chose a bright green cast and I bought some zebra print duct tape!

It is very summer-y. It reminds Joe of 80's.

 I had to wrap tape around the bar because it was really rough and when we burp her we set her on our knees, the bar rest on our knees.

She has 5 weeks in this cast and then 3 months in a Rhino Cruiser brace just at night.

Also, for Emily's birthday she received several Amazon gift cards. I ordered a few things and wanted to share those with the sweet gift card givers :)

I got this swing. Our neighbours gave us the frame, it is a very small frame and perfect for Emily. The swing holds up to 100lbs so she will be able to use it for a long time!

I also got this lady bug constellation nightlight. I don't have a picture of the actual lady bug but I took a picture of the stars on the ceiling. It has 3 different colors and turns off automatically.

I have been trying to find something that will keep Emily happy at night when she is falling asleep. I, normally, have to let her fall asleep then place her in bed or lay next to her until she falls asleep. Soooo, tonight I tried it out and SUCCESS!!! I laid her in bed AWAKE and turned on the ladybug (purple light of course) and left the room. I checked back a little while later and she is sound asleep.

I also got this  molar teether. So far she does not care for it but i will keep trying. She needs those darn molar to break through! 

I am sure she will be glad once they all break through too!

2nd hip surgery

2 blog post in one day! *Gasp*

Just wanted to update on Emily's next hip procedure.

We go back to the hospital in the morning. She did not get the 1st surgery of the morning like last time so I hope she does not get too hungry.

Under general anesthesia they will remove her cast and recheck her hips by injecting dye and using another arthrogram.

IF her hips show improvement since she was casted 6 weeks ago he will recast her in a new cast for 4-6 more weeks.



My sun bathing beauty!

 I am praying the first 6 weeks of casting has shown improvement!

Now to decide on another cast color. Maybe red, white, and blue!

Please keep Emily in your prayers tomorrow. This is not a major surgery but anesthesia can be hard on any child with epilepsy.

Surgery and home

Emily's surgery went well.

They ended up not actually cutting her hip. he was able to get it back into place by putting her under general anesthesia. He did have to make one tiny incision to release a tendon but that was it.

We got to go home at 2pm! Woo hoo!!



Daddy holding her before the surgery.



Her pelvis is very shallow and when he put the ball into the socket it wants to fall to the back so he compensated by making her cast tight behind her bottom to push up on the back of her hip.



On her bean bag, she is so uncomfortable :(



We go back in 6 weeks, the surgeon will remove her cast, recheck her hip placement and then (if they are healing well) recast for 4-6 more weeks.

It is much harder than I thought, especially not being able to comfort her better. She just wants to be held and snuggled and it is breaking my heart.

Praying we all get some sleep tonight!

Nerves

My nerves are kicking in.

Maybe it is the surgery tomorrow.

Maybe it is the 3 months in a body cast.

I am trying to stay calm but...

We had a great day today. We went to church and she was so loud (happy talking) we had to take her downstairs to be watched

After that we went to the zoo.

Emily really enjoyed herself! She was awake and alert the entire time! I am so proud of her!

After the zoo we all stopped and got ice cream and Emily ate some of my orange sherbet cone. She loves ice cream!

We are just trying really hard to enjoy today. I know she will not enjoy the next three months very much but we will do the best we can.

She got an early b-day gift from her g-ma and g-pa Rollins.

She will be spending a lot of time here after her surgery. She will be very limited in the seating options with such a big cast. Good thing she is little :)

I was telling Emily the other night about her surgery and was telling her not to be scared. That we know it will hurt and it won't be any fun but we are only doing this to make her better and to help make the rest of her life better.

Joe overheard me talking and said "I wonder if Jesus says that about us?"

Emily is not going to understand why her mommy and daddy put in this horrible hot and itchy cast for 3 months. She is not going to understand why she can't have a bath or be cuddled tight.

She is not going to understand that what we are doing IS for the best.

I think that is how we are sometimes. The painful things we go through could be for the best. When we are in pain and hurting from our problems in life we can't see why it is for the best. We can't see past the pain to know that it is making our future with Him better.

I do not know why Emily has to go through what she does.

I don't.

 Epilepsy is way more than enough, then to add this painful surgery and even more painful recovery on top just seems too much.

We just have to trust that it is what is best for us and our family.

Well friends, I just ask if you will pray for my little princess.

Pray for the surgeon and the OR team. Give them the wisdom they need to take the best care of Emily. Pray for Joe and I during the 3 month recovery. It will be trying on our patience I am sure.

Most of all pray for Emily.

Thank you friends!!