Another hospital visit

So Emily made it back to the hospital...again.

This time for some IV steroids. Her seizures have been relentless and we just can't seem to stop them. When we do it is not for very long.

So lots of tylenol (in case it is teething) and a couple med changes we are hoping to do the trick.

It has been a rough couple of days. We NEED to get these seizures to stop.

We are supposed to go home in the morning so I will try and do a better job at updating everyone then.

Thanks for all the prayers!!

The past week

After my last blog post we had to take Emily to the hospital. It ended up being a short stay, just overnight. She ended up having over 100 seizures within that 24 hour time. We tried everything we could to stay home because the more she is in the hospital the more germs we expose her to.

We got some more of the testing back from Cleveland and all it showed was a vitamin D deficiency. More normal genetics. We just had another genetic test sent out and that will take several weeks.

We are currently trying to stitch her from the ketogenic formula to ketogenic meals. We are changing it slowly so her body can adjust to actual food. So she is getting one of her five meals in food and she is eating about half of that by mouth. She really does not like the meat baby food ( i don't blame her) so we are looking into different protein sources.

She is still having many seizures a day. I think it may be her teeth, she wants to bite and chew on anything that gets close to her face. We are giving her oragel swab and Tylenol pretty often and it helps a little bit.

So that is pretty much it. She still is not sleeping at night. We did get our nurse back (yay!)

Here is a video (if it works) turn up the volume, Emily is laughing in her sleep. Whenever she hears me talk she starts laughing again. It is the cutest laugh!!

haha Daddy! I took your chair!

raw

Seizures returned tonight.

sigh.......

Emily had gone over 3 weeks with no seizures, just lots of spasms.

It was nice. Nice to not have to count seizure after seemingly endless seizure.

I got to get out of the house for a day, I almost put my guard down. Almost.....

I watch Emily like a hawk. Every movement every twitch and eye flicker. I watch other people kids for seizures. I look at kids in the grocery store afraid one of the will have one.

It sucks. Their is no other way around it. It's not fair.

It's not fair to watch her not develop with other babies her age. It's not fair that she slept through her birthday party because she could not process all of the noise. It's not fair that I have to sacrifice any sleep I might get to watch her because the seizures have screwed up her sleep cycle and during the day she has therapy 3 days/week. Today , even with a nurse, I got woke up 3 times with phone calls for appts, testing, insurance.......

It's not fair that people have removed themselves from our lives. I have very little family support. Those who do help us financially and emotionally we are incredibly grateful for and they know who they are. Our church has been a HUGE source of help, honestly we would have lost everything without them.

Others are just too busy with their own lives. I get it but it is still just not fair.

I am not good. If you ask and I say yes I am lying. Things are ok, I am just ok. Most day are good enough and we do get by. Some days are easier than others. Days like today not so much. One day I will be good. I know I will, just not today.

I know to some I sound like an whiney ungrateful brat but this is how I feel. My emotions are raw and I am just being honest. Things tonight are not ok.

Tomorrow is a new day blah blah blah I know but right now I can't stop crying. I hurt for Emily. I hurt for me and Joe.

45 seiuzres in and I am praying they will stop soon.

I debated posting this. It was very theraptic typing it all out. Maybe it will give someone else the nerve to be honest with themselves too.

fun weekend

Joe's dad and step-mom (Lonnie and Brenda) came in for the weekend.

Along with Joe's brother, George, we when to a local theme park. Holiday World was fun but man it was so packed! It was also pretty hot, our blistered feet are proof.

Emily's nurse and her husband and daughter volunteered to watch Emily for the day for free. It was the very first time I have been away from Emily for longer than a couple hours. I am so thankful to her for giving me and Joe this opportunity to have fun and relax for the day.

We did not get to ride a ton of rides because of the long lines but we did get to ride one called Frightful falls. It is a "log" that up to 4 people can set it, you ride around floating in the water, up the lift and down into a splash of water. It's fun, not the most exciting ride but fun.

When we got to the front of the line I noticed an electric wheelchair and then I looked over and saw a family who just had finished their ride and was climbing out of the log. The mom sat in the front and dad sat in the back with his teenage daughter. As they climbed out he picked her up and carried her to her wheelchair. It was then I noticed she was severally handicapped. It almost brought me to tears thinking about how they were giving their daughter the experiences that they would have given her had she walked up to the ride with them. I could not see her face but Joe could and I asked if she was smiling and he said "ear to ear".

I don't know what Emily's future holds, none of us know that about our kids. I do know , however, that I will give Emily every opportunity had she never had a seizure disorder and all that has come along with it.

It is so nice to see Brenda and Lonnie. They live over 4 hours away so we don't get to see them as often as we want. We tease them every time that we found them a house, well halfway tease.

When I woke up after they left I had a clean dishes and laundry was washed and folded.
Those are such little things to other people but to us it is a huge deal. We appreciate any help we get!!

Her monogrammed outfit from her nurse!

Look how big Emily looks!
I think they kinda look alike in the picture. She is looking so much more like her daddy lately.

you know you have a medically fragile child when.....

You turn an old IV pole and a measuring tape into a hair bow holder............

Emily's grandma, Brenda, is making her a hair bow holder but she is accumulating them very quickly and I needed to get them up to where I could see what she had.

Our first home health company sent this pole with her feeding pump and when we had to switch companies they had me mail the pump back since it was so small but they said to keep the pole. We live pretty far out in the country so the company saved money by me keeping the pole instead of paying someone to drive out and pick it up.

I just needed a laugh today.

Oh by the way this is what 3am looks like in the Rollins' house

Cute, but I was wanting the sleeping baby look.

update time

First, our day started crappy yesterday.

At 7am I hook Emily up to her feeding pump for an hour because usually she is asleep and that way I can get an hour of sleep to. So I got up put her extension on started the pump and back to sleep I went. The pump was down an hour later and Emily was stirring around. I put my hand on her and she was soaking wet! My first thought was that she peed, I turned her to her side and the bed was soaking wet too! I instantly grabbed her extension and I did not hook it up right so for an hour 6 ounces of formula ran into my mattress!!!

Then I get her up and start getting her meds together, the nurse comes in and I get a phone call from the nursing agency. Medicaid has denied my nursing coverage. The nurse has to leave immediately. Mind you I have had 1 hour of sleep so far and Emily has a neuro appt at 1:30pm.

So quickly before the nurse leaves I took a shower and got ready and made some more phone calls and then off to the appt we go.

The appt was great. The result from her last eeg was so much better. She did not have any seizures during the eeg. This is the first time she has ever done that! We are also weaning her clonozepam (klonopin) too. Hopefully in 10days she will be completely off of it.

We also go the results of some testing she had done in Cleveland. Emily has a vitamin D deficiency which if common in kids who are not in the sun much, so we need to add that supplement. Another one of the genetics was normal, another they did not have enough blood to do it so we had to go the lab after the appt and get it redrawn. We were at the lab for almost 2 hours. I was so tired at this point. I did not leave the hospital until after 5pm. I rushed home, Joe had some dinner ready for me, I shoveled food in and fell into my bed for a few hours and now I start my day all over.

 

I am so thankful we met emily's nurse. She is more than Emily's nurse she has become a friend! Besides Joe, myself, and her nurse we have no one that can take care of Emily. No one knows anything about her diet, meds, seizures, g-tube, and therapies. So we are so thankful for her because if there is ever an emergency with Joe or myself I know we can call her.

It is hard when the people you are supposed to count on choose not to be the people you always thought they would be or should be.

It's amazing how having a sick child really filters the people in your life. At the end of the day you really know who you can count on.

Well I am hoping we can get this medicaid issues resolved quickly and get her nurse back. We are looking forward to a fun weekend!

Emily laughing in her sleep.

4th and 5th of July

We have had a great 4th of July weekend!

On Sunday we had Joe's cousin Brandon and his wife Casey. They are expecting their first baby in a few months and it was fun to be able to give the advise for a change. They are having a little girl too, I am excited for Emily and Brianna to grow up together!

We watched fireworks from our road and Emily slept through the entire thing! They were even shooting off a cannon and she just snoozed!

On the 5th we went to the Neal's house, we ate and played games. It was a lot of fun! Good food, friends, and "family" you can't go wrong.

We took this picture last year at the Neal's house so this year we recreated it just to see who much she has grown.

hold your head up

Emily had her eeg done yesterday No results yet and I can not read an eeg but to me it seemed better. I know that she did not mark it as much as in the past BUT Emily did not do the movement that she has been doing, the movement that I am concerned about. Little stinker.

Hopefully it will show some improvement though.

We have seen some improvement in the development the past week too! At times it sounds like she is mimicking us and she is making new sounds too. Her head control comes and goes but it is slightly better. Occasionally when laying on the floor she will roll to her side.

Last night I put her on her tummy, which she hates, and she lifted her head all the way off the floor! She did this several times too! I was so proud of her and she really did tolerate being on her tummy too!

It's amazing what you can do when you don't have 75 seizures a day!