Cast off tomorrow!!!!

We are so excited in the Rollins' house tonight!!!

The cast comes off tomorrow!!! Wahoooo.

Can you tell we are all so excited?

No more silly bar that is in the way of everything!

No more hard cast.

No more shoving diapers in to her cast either!

Since being in the cast Emily loves to pull her shirt up.

Seriously if she is not in a onsie she pulls her shirt up as far as she can get it!

Once she gets her shirt up she then likes to pull her g-tube!

This is a fun battle. All. Day. Long.

Hand clamped on her tube!

I can't get frustrated though because it is fine motor skills, right? :)

I can't wait to see her little legs and give her a real bath! I bought her some goats milk soap for her very dry legs. I used it and I am hooked now! (Just got to convert daddy ;))

I will try and blog with pics tomorrow.



Happy 4th of July!

Hope everyone had a great 4th of July!

We had a great lazy day!

We have an amazing nurse now, Kathy, and she wanted to work today. Joe and I went out for dinner and spent some much needed quality time together.

Did I say how great Kathy is, because she is that great!

Our neighbour sets off fireworks every year, usually on the 3rd, but it rained so Emily did not get to see those. Spica cast and rain don't mix.

We did have a cookout with some friends and family but I did not get one picture.

I thought Emily may like some of the fireworks so we bought just a couple little ones for her. She liked the sparklers, one of the fountains were very loud and she only liked the first part of those. The squealing sound of those made her giggle.

My camera died after these two pictures of her watching sparklers.

So I had to break out the camera on my phone.

She was still watching the sparklers :)

Not liking that sound too much!

Emily is doing really well. We see "things" that could be spasms every week or so. Nothing major and they never last long. She is cutting 3 molars and they have all turned into teething hematomas and are pretty painful!

She gets her cast off on July 22!!! We all can't wait!!



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.

adapting and playing

Since Emily is in her spica cast she cannot have a bath. We use an inflatable bath basin to wash her hair. It is not easy and she does not care for it either. I have a couple bowls of water and it gets very messy!

So I found this drip feeding bag and I found an old IV pole from when she had her feeding pump. Then viola!

I fill the bag with warmer than normal bath water, because it cools down fast and I can control the drip rate and wash her hair much quicker.

She got this stacking toy for her birthday and she loves it! She played with it tonight before her bath. :)

Emily's bed it attached to mine with the front rail off. I put on the little mermaid for her and tucked her into bed and within minutes she was out! We might have to watch the little mermaid more often!!



cousin and cast adjustments

Things are going pretty good with Emily. No seizures or spasms in quite a few days. I think the problem was teething pain. Once we realized how much pain she was in we switched some meds and tada!

We had a great Memorial Day weekend.

Sunday Joe's mom and step-dad came over for a little cook out.

Then on Monday Emily met her cousin, Zoiee, for the 1st time. Zoiee is such a sweet and smart little girl. She just loved Emily and Emily loved the attention!

We really enjoyed our time with Joe's step brother, Jeff, his wife, Megan and Zoiee. Wish I would have gotten more pictures though.

Emily's cast has been irritating her g-tube lately. She has lost a little weight and settled down into her cast and the cast is not pushing up on her g-tube when we set her up to feed her.

We took her to ortho and the cut it down a little bit. I was afraid she would hate the cast saw but it actually made her laugh!



Before cutting it down. This is with her laying down, so imagine setting up!




This is after. SO much better. She was so happy to get to eat again!



Less than 2 weeks away from her next surgery. I can not believe how quickly time has flown by!

They will remove the cast under general anesthesia, recheck her hips with a dye injection, and if it shows improvement they will recast her for 4-6 more weeks. I am praying that the recast her because I really want this to work!



I love this laugh!



We have also a new nurse. I won't go into details but our last nurse that we had for over a year is no longer with us. Our new nurse is fantastic! From our past experience we chose to only have her 2 days per weeks, that is enough for us for now. I am so thankful to have found a great nurse with Emily now that we can trust!

Neuro visit

Emily had a neuro appt with out favorite neurologist on Thursday.

I showed him the videos I took of Emily newest tricks and he agrees that it looks like spasms but the new thing that we think is a seizure he is not sure about.

She gets very still, her arms get tight, her eyes dart around and if you are quite she does not make any noises. If you talk to her she cracks up laughing! It is a cute, hysterical, belly laugh and not at all what you would think a laughing seizure would sound like.

She responds to us during theses spells which would indicate it is not a seizure but with Emily anything is possible.

So, no changes neuro-wise for now. He noticed how much tighter her arms are getting so we added a very small does of Valium in the morning to help keep her loose.

She has not had any spasms in 3 days though. Just 2 day in a row and nothing since. All 4 molars are coming in at the same time so we are dealing with some major pain, especially at night. So we just taking day by day and handling what ever problems arise that day.

Her spica cast is not bothering her at all. You would not know she was in a body cast by the way she acts!

The only time she is uncomfortable is in the car and don't take her many places.

The way her legs are bent and the fact the her legs are so short make the car seat even more uncomfortable. We have a pillow under her to make her fit in it a little better.

Thanks so much for everyone's prayers!

just cuteness

Things are still going well. I am amazed everyday at how well Emily has adjusted to her cast.

It is almost as if since she does not have to worry about moving her legs she can concentrate on her arms and vision more.

She is tracking and following our voices much more consistently.

She is addicted to Mickey Mouse Clubhouse! I can turn on cartoons and she passively watches but if we turn on Mickey she lights up!!



I know she is sporting some crazy hair. We just washed it and it dried that way lol!





She fell asleep waiting on me to change her :)





We lovingly call her our puppy. She is always licking!





Can you tell she is teething!?





She fell asleep with her mouth wide open, chewing on her pillow.





See, there's Mickey!





Watching Mickey

I can't believe we are almost 2 weeks into the casting already. Glad it's going by fast!





adapting

We are slowly figuring things out.

Emily is not in much pain during the day, mostly just at night. When she is uncomfortable it is eased with a minimum dose of Tylenol or Valium.

I am going to post the things that work and don't work while she is in the spica. I am so thankful to have found a few parents who have already gone through this. Jenny over at http://colofisch.blogspot.com/ has been so helpful! Her little girl Cici has had to have a spica and is going though it again soon.

Our hardest thing is to figure out how to get Emily setting up straight enough to eat without chocking. So for now she is only eating a few bites per day and the rest is going down her tube. She is not really interested right now for some reason too.

The way her legs bent she can not set in a chair or on the couch.

We are working with her therapist to try and figure something out.



Here we are using her boppy, a pillow under that to elevate her, a tummy time pillow behind her back to take the pressure off her cast on her back and a total pillow to support her head.



She loves to be outside. Emily's grandma and grandpa Johnson bought her a nice wagon for Christmas but it is not wide enough for Emily to use right now. She will be able to use that wagon once she is out of her cast.

For now we are using one a friend gave us.

We used a wedge pillow for her to lay on and a memory foam pillow under her bottom to keep her up.

It was warm that day so we did not get so stay out long but she liked it.

We got this inflatable shampoo basin from amazon. It is large for her but it worked well. She did not care for it but she got over it quickly.

I love this face that she makes!

She instantly started reaching up and grabbing the lights and toys. After this pic I added some more toys for her to play with. I am trying to get a video together when she was playing with this. She was talking and what we call singing. It was so cute!

She is really moving her arms so much more since she can't move her legs.

We are really going to kick up therapy the next few months and hopefully when the cast comes off she will retain what she learned!

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!