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!

Lately

It has been a pretty eventful week or so.

Emily's seizures were still pretty frequent after her last hospital stay so Last Monday I called her neurologist to talk about what is next and we decided to bring her in to do a couple days of IV steroids. In the past it has always worked very good for her.

It seemed that they got worse this time. We made a few med changes and sped up the process of switching her to food from formula. She is still on the ketogenic diet I just make her meals now instead of the ketocal formula. Personally i think that has made a difference. She is not nearly as gassy and hardly spits up at all.

She is eating at least a portion of each meal and what she does not eat I just put down her tube.

We finally have stopped her clonazepam and as of Monday she will be off her lamictal too. I never saw any side effects of the lamictal but we also never saw an improvement.

Stopping the clonezepam has been such a blessing though! Emily is so much more alert and you can see in her eyes that she is seeing more too!

On Saturday while I was sleeping Joe got a video with his cell phone of Emily laughing. It is the most awesome thing ever! She has not laughed (awake) in so so long! Joe said that he opened his pop can and she cracked up so he snapped his fingers and she laughed again. He then coughed and she was laughing so hard all she could do was squeal! She has done this two nights in a row now. I got a video but it is too long. I will work on getting a shorter one to upload.

She is also resting so much better. She is sleeping at least part of the night since we got home and just seems much more rested when she wakes up.

Since leaving the hospital her seizures have gone down to 5-10 per day plus her spasms. They are super short too.

It was a long hospital stay and it always sucks but since Emily has been in so many times we have really gotten to know a lot of the staff and it is nice to have friends while we are there. People that set down and pray with us and for her or just set down and talk. There are a couple of night shift nurses we have grown to love, Alisha and Stephanie kept me company many nights and I am thankful they love Emily and take such good care of her. There are so many people there that love her!

I had a couple rough days in the hospital watching my baby seize over and over for hours on end. Over the last week I have had a couple of wonderful emails from parents who understand, I know I am not alone in these emotions.

On a completely different note...

I was thinking about my post a little while back where I was just honest and raw with my emotions. While I am terribly sad that people have chosen to remove themselves from our lives I am much more sad for them. They are missing the opportunity to get to know an amazing little girl. Emily is such a blessing and to see her smile and laugh brings such joy to my heart.

Thank you all so much for the prayers

welcome home

We finally got home yesterday.

We decided to stay in Cincinnati for the night when we stopped for dinner because we were just too tired to drive any further.

Emily is doing good. She really has been such a good baby this past week. She has had to endure 16+ hours in her car seat, 5 days of eeg leads glued to her head, 5 different people trying to get an IV in her, she was sedated, and drugged up for days. That is a lot for a grown person to take and she did all of that in a week and never even threw a fit!

There is not anything new to share today so I am just gonna post some pics. We stopped at lake Erie and took pics, we tried to have as much fun as we could.

staying in a hotel for the first time

ahhh bath time or nap time?

sleeping so good!

what do you have glued to my head??

We stopped at lake Erie and took a few pics.

Yay! We are staying in another hotel!!

So happy to finally get a bath after having probes glued to my head for 5 days!

Seriously thinking about getting a hotel bed for her to sleep in at home.

This is what we saw coming home! There were signs all over our yard, inside and outside of our house!

Thank you!!

She did not want her sunglasses off!

Cleavland or bust!

We are home! (again)

Emily was supposed to get choral hydrate while she was in the hospital to help her sleep better but we had just a tiny bit of drama with getting it. We found a compounding pharmacy in New Albany that could have it made and ready by the time we left the hospital, thank goodness!

We are so glad to be home again too. I love the nurses on 5W but I really love my bed and a few days on the chair/bed and the window bed are enough to kill your back for weeks.

While we were in the hospital this time we got a little bit of good news. We got her appointment for a 2ND opinion to Cleavland and it's in just 2 weeks!!

They have already scheduled a 3 day eeg. Doesn't that sound like fun? Three whole days with her head wrapped up with goop under it all. Her head always gets so hot to so I can not imagine how she will feel after 3 days. She will also be getting a PET scan. We will probably be there for a week.

This is what an eeg looks like.

So hear is to hoping and praying for a good night of rest!

I almost forgot something! This is what we came home to!!

A double rainbow!!

It was so beautiful! Thanks God!! :) Isn't He such a show off! haha!

Home.......

We got to come home yesterday.

This was probably the best hospital visit ever! Very planned and straight forward, nothing unexpected.

Going for a walk in a wagon at the hospital

Emily had 3 doses of IV solumedrol (steroids) and she responded very well to it. We were told she would come out of ketosis meaning her blood sugar would elevate and her ketones in her urine would stop but in true Emily fashion she did not do either.

Her blood sugar was 87 at the highest and her ketones only dropped to moderate.

She never does what the doctors and text books say she should do. What a rebel!! haha

We did miss a few of her regular nurses though. Missed you Britt and Julie!! Why you must go a learn things is beyond me! HA!

ALSO, I have some pretty darn good news. Saturday night in the hospital Emily went to bed at 12:30am and did not get up until 7 or 8am!!! I know!! I was freaking out too!!

She was woken up a few times by alarms and such but I got her right back to sleep every time. So that meant momma got sleep too!!! Yippee!!

She has been such a happy girl too!!

Currently as I am typing she is snoozing so I am praying that this is the beginning of a fantastic new tread for her!!

Mom! Get that stupid camera out of my face!!

I have met a few blogger friends so far and they have said the nicest and sweetest things to me and one in particular is Hallie. Sadly, on April 15Th she unexpectedly lost her son. Please click here to go to her site and please pray for this family. It breaks my heart to think of loosing Emily so I can not ever imagine how this family is feeling right now. Words cannot heal those wounds but we can cover this family in prayer!! I know Emily has a ton of prayer warriors too!!! Thank you all so much!

Also I just wanted to say that I have a bunch of visitors and not so many comments. I just want to know who is reading this blog and how you found it. :) A few people told me they don't know how to comment. All you do is click on the word comment right below the post you want to comment on, type your message and follow the instructions below that. Pretty simple. Also my email address is on my profile and facebook page is on the side if you ever want to send a private message.

ahhh home

We are home! Yay!

It's a little bittersweet though. I am still nervous about having a baby with seizures, that no one can understand, at home. It also does not help that we are about 35-40 minutes away from her hospital.

It was very difficult getting her medicine from the pharmacy too. Since Emily is on the ketogenic diet she can't take just any medicine. We have to make sure there is no sugar and low carbs. Of course the pharmacist has never heard of this diet and of course they did not have the klonopin I needed but the good thing about being in the hospital so long is I got to know the residents and the one that was on call was super sweet and we got a temporary order to get us through the night. Was the the longest run on sentence ever?! haha.

So tonight I am going to catch up on everything that has been dvr'd and pray that we have a boring uneventful night. I love boring!

I did get a video of Emily from the night before last, it is very dark but the sound is all you need. She got to laughing so hard she gave herself hiccups! I love this sound so much.