Monday, May 30, 2011

comments

Something is wrong with my blog.

It is not allowing people to comment normally.

To comment you have to select anonymous and just type your name in the comment.

I was wondering why no one was commenting on my last 3 posts. :)

Sunday, May 29, 2011

Take a guess!

Guess what Emily did today!!




You guessed yet.....






Well, she drank TWO ounces of pediasure from a sippy cup!!!!!!!


It was not perfect and it was over an hour or so but she did not choke or push the sippy cup away.

She drank 1 ounce yesterday but today I think she realized a little bit more what she was doing.

SO proud of my girl!

Saturday, May 28, 2011

Wish list

I can not believe that my little girl will be 2 in just over a week!

This year has flown by, I feel like I was just planning her 1st birthday party.

I have had a few people ask what to get her for her birthday so I put together a amazon wish list of things I think she can use or would like.

I debated putting this on my blog but I think this is the easiest way to get it to the people who are asking what to get her.


Just because I think she is so beautiful..here is a picture of Emily sleeping. She fell asleep while playing her piano :)

Friday, May 27, 2011

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!

Saturday, May 21, 2011

hard day

I wish this were a happy, fluffy, everything is great post-it is not.


14 weeks spasm free came to a screeching halt this morning.

The first arm flailing, heart sinking jerk was obvious and very painful to watch.

We are heartbroken and devastated. We knew it could come back but were praying it would not.

So far she has had two clusters.

She does not have many other options left.

We will keep fighting but tonight we are weak and hurt.


Wednesday, May 18, 2011

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!



Saturday, May 14, 2011

Friday, May 13, 2011

My Montage 5/13/11 at OneTrueMedia.com

Emily is starting to use her hands more!

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!

Monday, May 9, 2011

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!

Sunday, May 8, 2011

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!!

Sunday, May 1, 2011

another first

I had this grand vision of the first time Emily got to swing on the swings. It know to most it sounds like a silly vision. To me it was a big deal because Emily is very limited physically. She is about a 3-6 month age range developmentally.

She got a huggabebe for Christmas and it is just perfect for her in one of the bucket swings.

Joe and I had this planned and Emily was in a great mood!

We found a local park and to my excitement no one was at the swings. Emily tends to shut down it there is too much noise and by shut down I mean fall asleep.

We get everything ready, put her in her huggabebe, stick her in the swing, and then instantly this......


She HATED it!!! Every single second.

We will try again sometime in the fall. She will be in a cast for 3 month next week so maybe after some time she will enjoy it :), we'll see.

My girl would just rather I hold her and snuggle at the park then swing. That is ok. She is only little for a while.


We are just so proud of her. She is doing new stuff everyday! Just yesterday she held her arms up when I unbuckled her car seat (she knew she wanted me to pick her up!!)
She is holding her trunk better and better everyday.
When we hold her she does not just lay her head down on our shoulders, she holds her own head up when she is not tired.
I could go on and on about the inch stones she is making.

Emily may not have many milestones, some days they will be inchstones, centimeterstones, or even millimeterstones but heck they are something!!

I just love her so and I am so thankful I get to watch her grow up, no matter how far she may get.