We are here

We are here. Safe and sound. Emily was a perfect angel the whole trip!

She did not cry one time on the 8 hour trip, which that in its self is a miracle. If you knew Emily when she was very little you knew she would not set in her car seat for 1 minute without screaming her head off. Driving anywhere with her was torture and by the time we got somewhere my nerves were shot and she was a blubbering mess.

So this trip was a peace of cake!

She had only had 4 seizures all day the day before and only 2 in the morning before we left so I thought things were going good, notice I said thought.

We got to our hotel, which is gorgeous! I love a good deal and I did a ton of research and found a room at the Hilton for $89!

We planned on going swimming when we got here but there were a few people already in the pool so we decided to wait and go in the morning because Emily has very much become a morning person now, well until 10am hits and then she is back asleep.

She normally gets up between 4-5am everyday but this morning it's almost 7am and she is still asleep because she had a ton of seizures last night and we had to give her a ton of meds so now she is wiped out.

So probably no swimming for us and we were hoping to get out around town a little too but we have to check into the hospital at 1pm so I don't think we have much time. That's ok though, we all had a pretty good nights sleep so now we are ready for this week.

I am excited but very nervous at the same to time to hear what they think. I really want to know whats going on with Emily but it really terrifies me that we will get a worse diagnosis.

I will try and update through the week. I am not sure how well the Internet service is there so it may be sporadic. Only one of us can stay the night so we are going to try and get a room at the Ronald Mcdonald house.

Busy and long week. Pray with us throughout this week, we pray for answers that will help us to help Emily, also for continued safety, and peace with whatever we may learn here.

Thank you all so much for your support and love!!

Happy Mother's Day

Happy Mother's Day!

This mother's day is the first time I am truly excited about.

Many of you know I struggled with infertility for years. After one miscarriage, tons of medicine, shots, procedures, and countless negative pregnancy tests here I am.

This is the first time I saw Emily. I had to be put under general anesthesia for my c-section because the epidural only took on half of my body. I was very sick here too. I could not believe she was mine.

I am so thankful for Emily. She made me what I had always wanted, a mom.

This is an amazing song!

Mother's Day is not a happy day for everyone though. I know many people who still struggle with infertility and loss and I know how it feels. I pray for peace for all of those who are still struggling. One day we will rejoice in meeting our angels in heaven!

I am blessed to have many mother's in my life, my mom, in-laws and the other women in my life who love me like their own daughter. I am blessed to have each one of you! I love you all.

pictures!

Something has been wrong with my phone the past week. I take a lot of pictures with my camera on my phone because it's always there and if Emily's doing something cute I have to catch it quickly.

So I finally got it working and here are a few pictures I have been trying to post

This is the park right by my house that were I went walking the other day. Isn't it beautiful there?

I was working with Emily on setting up and she is doing a lot better! She has a hard time getting her head up though.

I always needed a girl! I mean seriously could I add anything else to her? haha!

This is from her therapy yesterday. Her PT brought a bench to help Emily set up. She set her up and put her arms up on the bench and clearly she did not like it.

Her reaction to making her do something she does not want to do---sleep! You cannot wake her up either or I should say, she will not wake up!

nothing new

So I have not updated in a couple days-sorry.

There is just not anything new to tell.

Emily is still seizing around 20-30 times per day.

She is beginning to get used to her sleeping medicine so she sleep less and less every night.

I did not have a nurse yesterday and I needed to run a few errands and since Emily does not normally have seizures in the middle of the day we ventured out.

The beginning was OK but it ended up with me stopping to catch a seizure then driving as fast (and safely) as I could to get home.

She has been very gassy the past few days too, not sure why all of the sudden if got so much worse.

Daddy had a rough night with her after I went to bed at 4pm. She was very fussy and then had a lot of seizures too. Poor baby.

Also some good news....We got an appointment with a photographer to get Emily's one year pictures done.

I applied Emily for the Littlest Hero's Project (click the link to read more about it), they connect you with local photographers and you choose one to work with. We got our appointment the week after we get back from Cleveland and we are going to have our pictures taken at Huber's, it's so beautiful out there. The photographer we chose was Shanna Simpson. She was our first choice, I love her pictures and can't wait to work with her.

We are getting the last minute things ready for Cleveland, we are leaving on Sunday morning. It is an 8 hour trip but after you factor in stops and feeding and (hopefully not) seizures it will take longer.

good day

Yesterday started out rough because Emily had several seizures early in the morning. They were not long but the cluster just would not let up, I gave her meds but who knows if it really helps.

The two days prior she had only had 8 so it really sucks to go back up in frequency again.

The day did get better though! When the nurse got here, one that could stay awake, I went up to the park for a walk.

It was so nice to just have an hour to myself. It was so beautiful too! I could smell the flowers blooming and everything was so green!

I was in bed when Emily had her occupational therapy at 6pm so Joe did it with her and he said she did great!

They laid her on her boppy with her knees under her and let her chew on a toy, when they pulled the toy away a little she lunged for it! She has never tried to get something let alone lunge for it!

Normally when you put a toy in her mouth she just pushes it out with her tongue and makes an awful face! He also said she was making more purposeful movement!

This makes me so happy so see these little things happening!!

Your Fired!

We fired our first nurse yesterday.

We really did not want to do it. She was so nice and sweet and seemed to be a good nurse.

She came in Saturday morning looking like she was ran over by a mack truck! She told me she went to a concert the night before and she was still pretty tired.

First thing she started filling out all the morning paperwork and a couple times she closed her eyes but just for a split second. We have all done that though, at least I know I have! So I gave her the benefit of the doubt. She was acting a little odd too but I just chalked it up to being tired.

We got the morning started and I was doing Emily's stretches and the nurse was setting on the floor with me so she could learn and she straight up fell asleep! I just stared at her wondering what the heck I do.

Joe and I were just going to run to the grocery and get some lunch together but since nurse sleepyhead was here I did not want to leave. My sis-in-law stayed the night so I asked her to watch them and we would be quick.

Honestly I should have just asked to leave but I am so not a confrontational person, it terrifies me, so I thought I would give her a couple more hours to wake up and since Cayla was there she could tell me what happens.

Joe and I went on and Cayla texted me and said she was charting and she fell asleep with her face in the notebook.

That was it, I called her boss and they called and told her to leave.

Cayla said the nurse lied and said she was setting there watching tv and charting! Watching tv in the back of her eyelids I guess! So she cried and begged but I just could not trust her anymore.

I know she needed the job but it is my responsibility to make sure Emily gets taken care of and there is no way she could have done that.

So we have to start all over again. Honestly Emily is not a ton of care. Just a lot of seizures , meds, and g-tube care. She is not on o2, does not need suction, she is not extremely fussy, and she loves to cuddle. What more could you ask for in a patient! :)

I can do all of Emily's care 24/7 I just need a break because most of her seizures happen at night and she has them regardless if she is sleeping or not. So I am up through the night to watch her because when she does have them she does not make any noise and her movements are pretty small so she would not wake me up.

We are trying to get a 3rd shift nurse just Mon-Fri but apparently that is very hard to find.

Emily's seizures were exactly the same from the night before. She just has 8 and all were under 8 seconds, I should play the lottery haha!

Hoping we get to go to church in the morning, I miss everyone there.

So much better!

Yesterday was so much better than the day before!

Emily had 8 seizures all under 8 seconds and that was within an hour.

She slept a lot more too, I sure she was so worn out from the 71 that she had the day before!

We had another new nurse yesterday and I am still not comfortable with someone helping me with her. I am just being honest. I feel that I do the best job so for someone to come in and do things differently than I do is bothering me. I know, I know, it is something I need to deal with and I am, just very slowly.

I did get to get out of the house for a few hour with Angie and her baby Ava. Ava is 3 months younger than Emily. We hit up a few yard sales and stopped by Kohls and got the girls some summer clothes. I am pretty sure Emily should be set for summer now. I just need a couple pairs of cute sandals and she is good.

I did not realize how badly I needed to get out and just relax for a minute. It was funny though because I am so used to watching Emily like a hawk for seizures I kept turning around and checking on Ava to make sure she was alright. Habits.....

I wanted to try and get out to the park this weekend but I guess its gonna rain so we will just be chilling at home. Hope everyone has a great weekend. It's Derby weekend so everyone be safe, watch for crazy drivers!