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!!

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.

late Easter post

We had a great Easter. Emily spent time with both sets of grandparents (Rollins and Johnson)

This year was much better than last-no seizures to fight!!

What a difference a year makes!!



Emily with her loot!




Holding onto her all purple basket her g-ma and g-pa Rollins got her

 

Emily and her aunt Cayla




I can't believe how little she was last year! This year she kept trying to knock the eggs off the tray!




She is loving Easter this year!





Still abnormal BUT........

Emily had her 1st post ACTH eeg. It was sleep deprived so that we could catch her falling asleep and then waking up.



Slap happy from keeping her up until midnight!



Love this smile!

She did great! She was not a happy camper when I woke her up at 4am (neither was I).

They hooked her up to the eeg and we wait. I am horrible about staring at the eeg reading the whole time. I can't read them but I can sort of tell the really bad stuff (I did not see that).

Normally you wait a week to get results but her fabulous neuro just happened to be there and he looked at it for us and said....

It is still abnormal (slow background and some spikes) but no seizures and even bigger NO HYPSARRYTHMIA!!!!!!!

This is huge!!!

Emily, at her worst, had over 200 seizures and hundreds of spasms in one day. Completely uncontrolled.

While I still long for her to have a totally normal eeg one day, I will take this!!!

Thank you Jesus!!!!

I promised pics last time so here are a few to hold you over. :)



Emily and her new cousin Sammy.





I had to tell Emily that she could not eat her baby cousin!





You can tell how much shorter her left leg is. It is up and out of socket :(





She is saying "Thanks Kathy for my new chair!" ha she does really well in it. I need to get a newer picture, her head control has already improved so much!! Thanks so much Kathy!!!





Loving on grandma!

She has become very attentive when you talk to her and she smiles at everything!

Emily loves the sound of a clicking pen and loves going from dark to light.

I love that she loves things, no matter how small.

 

We have so much to be thankful for and thankful we are!

 

Our God is the same in the good and bad and we praise Him the same!!!!

good times

Things are still going really well with Emily. It has been almost 10 weeks since her last seizure and spasm.

The side effects of ACTH are slowly going away and we are seeing a very happy little girl.

She is very aware of her surroundings and is doing new stuff everyday. She is lifting her arms up and even touching her face and mouth a little. Her head control is getting stronger and she even tries to correct herself sometimes when she falls over.

I have tons of pictures I need to put on here too.

Emily is having her hip surgery in a couple weeks so please pray with us about that. It will be very a long and painful 6 weeks for Emily. I am praying it goes by quickly.

We have so much to be thankful for right now. We are blessed to have these past 10 weeks, I am praying so hard this continues!!

I know so many kids that are fighting this battle with epilepsy and can't get any relief and it breaks my heart. I just wish we had a cure.

good bye ACTH

That is it! All done!

Emily had her last shot of ACTH yesterday (Tue)

24 hours without it has already made a difference. We have seen more smiles and more of her personality.

Emily started ACTH on Feb 4th and has been spasm free since day 8 of the shots. Almost 8 weeks with no seizure or spasms has been fantastic!!

She is sleeping 8-9 hours at night! Not always straight but when she does wake up usually a diaper change and repositioning does the trick. She takes melatonin and a little valium, we finally found the magic combination.

She is happier all around. The past month or so she began grunting when you did anything to her that she did not want to do, which was pretty much everything. The grunting went down a lot just in one day.

Her eating has not changed either. Many kids go on a food strike when coming off ACTH but Emily's appetite has not changed thankfully because she is only in the 5th percentile of her height and weight. We need to beef this girl up! She looks like a chunky girl but she really isn't.

I am just so thankful she is such a good eater. She is still eating 100% by mouth. Only meds and water in her g-tube. We try giving her water by mouth after each meal but she does not like it and tends to choke. We are working on it though.

We have so much to be thankful for. I know that in a heartbeat all of this can change. I am aware how vicious and mean epilepsy is. I am also aware how strong my little girl is and we are celebrating each day!!

We are praying this continues.