still going strong

Well today is 4 days seizure and spasm free!!!!!

I am just so darn excited!!

I know that at any moment her seizures can return. I am not oblivious to that fact. I know many other children who that did happen to. So I am prepared for it.

She has been so happy the past few days too. I can only imagine how much different she fills. It seems like she is seeing better too!

Just a reminder about Emily's birthday party. It is on June 13th (Sunday) at 3pm. If you are coming please email me or just leave a comment so we have a head count.

I still can't believe she will be one Saturday! ahhh!!

She fell asleep with her arms crossed. It was too cute!!!

holding our breath

This is now 3 days seizure and spasm free!!

You don't understand what a big deal this is for Emily!! In the past she has only had 1-2 days without seizures and only one day without spasms. In the beginning (Dec) when she was taking ACTH her spasms seemed to stop but they started right back up as soon as she stopped the injections.

Yesterday was a really good day too! After staying up with my little 3rd shifter all night, daddy got up with her around 5am and I slept for 9 hours straight!! He had a hard time getting her to nap so at 3pm he laid her in bed with me and she was out and we slept for 2 more hours! ahhh, all she needed was her mommy. Most of the time she is a daddy's girl but when she wants to sleep or gets hungry she wants me. I love that I am loved!!

So we are praying for another seizure/spasms free day!!

just good

We are home! This is Emily's reaction to being home!

I think this was the quickest admission ever!

They got her stabilized pretty quick too. She got a round of IV steroids again. They always do help her seizures pretty well for a short time but they have never stopped her spasms but this time it did.

Drum roll please......................Emily's last seizure and spasms that we have seen was at 9:30pm on Thursday!!!! That is amazing because for over 48 hours she has not had any!!! WOO HOO!!!

We are having a problem with the lamictal though. When we went to pick up her meds they said they did not have any and when they did get it in it was gonna cost us $1100 AFTER insurance!! We have really good insurance too! UGH! So Tuesday is going to be busy making phone calls and figuring this out. Emily does have medicaid now but it does not go into effect until June 1st and they said it would require prior authorization.

Good news is that I remembered while we were in the hospital they made a bottle of compounded lamictal for Emily because she is still on the ketogenic diet but we found out that the chewable tablets were fine for her to take so we never used the compounded bottle. I called after we left and they still had it!! Since she was charged for the whole bottle the pharmacy let us have it!! It is only a 2 week supply though so hopefully we can get this all figured out by then.

We are hoping for a calm boring week. Also hoping her g-tube stays were it is supposed to!

Emily's 1st birthday is this weekend. I can not believe she will be one already! Her party is the next weekend, Sunday the 13th at 3pm. It will be at our church in Greenville. Everyone is welcome to come. If you would like to come just email me or comment and let me know so I can have a head count. I am looking forward to spending time with everyone!!

out of ICU

Emily got moved to a regular floor yesterday (friday).

This is her "room" in ICU. One wall and a curtain.

We have never had to go there before and I can honestly say I don't ever want to go back. It was not bad for us, it was just heart breaking to see all of the other kids there.

Emily was there because she was given a lot of medicine to stop her seizures, so they needed to monitor her very closely and fortunately she did great!

Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.

To hear the cry of a mother who just lost her baby is a sound I don't think I will ever forget. I have never been so thankful for Emily. I don't have to give specifics but please pray for that young mother.

The nurses and doctors that work there are some very special people and I have a lot of respect for them.

Enough with sad things.....

So, good news is Emily did not have a seizure that we saw yesterday. She has been extremely drugged and now that I think of it I did not see any spasms either, I will have to ask Joe if he did. Actually it's been 27 hours since her last one but hey who's counting? :)

I had a great talk with Emily's neuro dream team :) and we have decided to add a new medicine, lamictal. That drug will slowly be increased to her max dose along with zonegran. Once she is on those we are going to wean her off phenobarb and we have already began to wean klonopin.

So while she has been here she has been getting iv steroids and oral valium, that combination seems to really work when she has a major cluster like she had. In the coarse of two days Emily had over 120 seizures, that we saw, and that is not including her spasms that she has almost every time she wakes up. On top of her g-tube balloon exploding again, it has been a rough couple days for her.

I want to thank everyone who called and left us messages or send us messages on facebook. I am sorry if we were unable to return all of the phone calls but know that we listened to them all. We were not allowed to have our phones turned on in the ICU. I am thankful for the people who support us!!!

So if Emily behaves tonight we just may get to go home in morning. Keep your fingers crossed! If not we will go home on Sunday.

Please keep in mind if you plan on visiting in the hospital or at home please make sure you are healthy. Emily has taken another round of steroids which can lower her immune system and we need to continue to keep her healthy. Seizures are enough for this girl!

One last thing, June 19th is the epilepsy walk and we still have not met our goal of raising $500. Every dollar helps!

Click here -> Epilepsy walk

If you would like to walk with our team just click join team, if not you can donate any amount you like. It looks like we are going to have a pretty good sized team!! I can't wait. I am going to try my best to get shirts made so if you are for sure walking and would like one send me an email or message on FB and let me know sizes.

In the hospital again

Emily's g-tube balloon popped again! Actually it looks more like it exploded! Ugg! Except this time we could not get the g-tube back in so we had to rush to the ER to have them put it back in.

Meanwhile she has been seizing a ton yesterday and the day before. I gave her tons of meds but nothing was stopping them. I was desperately trying NOT to go to the ER and then she pops her balloon and now we had no choice.

While we are in the ER she starts showing off her seizure skills and it really impresses the doctors so she got a free ride to the ICU.

She is really not doing that bad, they are just extra cautious because they have given her so much medicine and they need to monitor her more closely.

Let me tell you it is a WHOLE different world here. I cannot have my phone on. So if you did not get a phone call that is why. I plan on making all of the phone calls in the morning, so don't worry.

Hopefully we will go to the floor in the morning or either be discharged home.

So that is that. I have gotten no sleep, well I lied I got 1 1/2 hours. I don't see much sleep in my future either.

Please keep us in your prayers. I would love to go home and spend a relaxing Memorial weekend there.

they're back

We have had a rough night.

Emily started seizing around 6:45pm and has not stopped. She had 49 seizures yesterday and since midnight she has already had 9. They around 5 to 30 seconds long. I have given her all of the medicine I can give her for now.

Since we switched to oral Valium it really knocks her out, unlike the ativan.

She is not on her full dose of zonegran yet, we just increased it again last night so hopefully that will kick in. Until then we started her on another round of steroids last night but those usually take a few days to work.

I have to take her to the hospital in the morning for some blood work and I pray that she stops seizing before we leave.

Stupid seizures!

burst your bubble

We had to make a trip to the ER last night and it had nothing to do with seizures!

Who ever thought that would be an exciting comment haha!!

I was changing Emily's diaper, getting her ready for OT, laid her down and her g-tube was sticking out much further than normal. I pushed it back in and quickly checked the amount of fluid in the balloon that holds it in place and all I got was formula.

That meant that the balloon in her belly had popped and I was pulling formula from her stomach that I had just fed her. I taped a gauze dressing tightly over the g-tube (which was still in place) and we took her to the ER.

The balloon on the bottom is what is inside of her stomach.

The dr. in the ER took out the old and popped a new one right in. No problems at all. Emily slept in daddy's lap the whole time.

We were told that we are model parents! Yay pat on the back for us. Her stoma site (hole in her belly) was perfect and very clean.

You know its bad when the ER doctor walks in the room and is happy that we are there for just a g-tube issue.

You see some very interesting things in the ER waiting room. Some people use the ER as their pediatrician. One mom brought her 6 or 7 year old in because she "threw up last night" seriously lady! Another brought her 2-3 year old in because he was chewing on glass and she was afraid he may have swallowed some hmmm perhaps.

Having a sick child makes you look at other peoples emergencies and almost laugh. Ha, your kid swallowed glass, well mine can seize for hours on end. Do they make bumper stickers that say that? haha

Sometimes you just have to laugh!

feelings

I have really debated posting this for a very long time but I think I need to get this off of my chest.

Unfortunately I feel like there are some people in my life who don't completely understand what we (Joe and I) are going through.

My daughter has many special needs. She is globally delayed-meaning all over. She has not met many of her milestones.

She cannot hold her own head up, set up, feed herself, or even hold her toys.

Watching her suffer from relentless seizures daily is painful to say the least. I know what those seizures are doing to her forming brain.

On a daily basis I have to crush and mix meds (3 times/day), clean her bottles, g-tube extensions, syringes and med cups. Measure out her formula by the gram on scale.

Check her blood sugar and ketones in her urine twice/day.

I have to keep her g-tube site clean and dry, check the balloon on her g-tube for the right amount of fluid so that is does not come out.

I have to deal with our private insurance company, SSI, medicare, first steps and now a visual school on a daily or weekly basis.

I have to make doctor appointment and schedule therapy. I have to do said therapy with her daily. Make sure I change her position often because she can't.

On top of all of that she needs things every other baby needs, baths, diaper changed, play time, rocking, cuddling.

Now I am trying to plan her 1st birthday party (and have gotten no where) We just did her one year pictures.

I don't sleep much and when I do I wake up often worrying about her or what needs to be done.

My blood pressure has been high and the meds are not helping again (calling the dr in the morning) I have no time to cook healthy meals for me and Joe-thank goodness for church family!!

Joe and I have not been on a date or even alone in the same room in months (like over 6months) and if we did have alone time I am sure we would both just want to sleep.

Joe works a 40+ hours/ week and takes care of a lot of the things around the house because I just don't have time to do much else. He also runs off of minimal sleep daily. I can't tell you the last time I made my bed or cleaned my bathroom.

I did not say all of this because I want pity or everyone to say what a great mom I am. I have actually turned off the comments for this post alone because of that.

What I am trying to say is, I barely have enough time to shower let alone make phone calls. I miss my family and friends and feel very isolated. I need people to call and check on us, even if it is only listening to a voicemail because I could not answer the phone. If I am busy I simply won't answer the call. I turn my phone down if I am sleeping and it does not wake Emily up if she is sleeping.

Please right now don't expect too much from me. I don't have much to give and what I do have is all being given to Emily.

I am so thankful for the people I have in my life and I don't want this to sound like I am an ungrateful person. Joe and I are so grateful for the many blesssing we have recieved during all of this. These are my feeling, right or wrong. I pray that no one is offended by my words we just hate feeling isolated.

Still not bad

Emily had a few more seizures today. They are still very short most under 10 seconds. We switched her rescue medicine from Ativan to Diazepam (Valium) and it worked really well. The ativan seemed to make things worse. I am very relieved that we have something that will work. Normally when Emily starts to have a cluster of seizures it can last hours and she can have 20-40 in one cluster, today it lasted under an hour and she only had 9. It's still an improvement.

I had to share this picture. When Emily sleeps she will sometimes reach out for me and she will hold onto me or sometimes she holds my mother necklace that Joe got me for mother's day. I just love this!

My goodness I love this little girl!

small victory

Emily got her one year pictures/ family pictures done yesterday.

It was a beautiful day for pictures! We took them outside at a local winery/farm. It was through the littlest hero's project. I talked about this in a previous post . Shanna Simpson, the photographer was so great! She was super nice and it was a pleasure getting our pictures taken by her! I can't wait to see them. Emily looked so cute in her tutu our friend Chandra made for Emily's 1st birthday. She is very creative, Chandra is also the one who made Emily's "hospital" blanket. We took this blanket with us the very first time she was ever in the hospital and from then on anytime we have to go somewhere we take it because it is such a comfort to her. We get so many compliments too!

Emily would not smile for her pictures though. We tried and tried and made complete fools of ourselves but I am sure we still got some great pictures!! Thank you Shanna for being a part of the Littlest Hero's project!

Ok onto the small victory...............

I have always been very hesitant about "bragging" when she has fewer seizures, most times Joe and I call her seizures the monster as to not let her seizures hear us and come back with force. I have realized though we may not always have good days or even great days so I NEED to celebrate all of her victories, large and small.

Two days ago Emily had 4 seizures, the day before yesterday 3, and yesterday she had 1. Now that is not including her spasms that she still has almost every time she wakes up, but even those are getting weaker and weaker. I also realize that Emily has many more seizures than we actually see but still this is a huge improvement from 70+ seizures/day.

I do not know if Emily is just having a good day or if we are actually seeing an improvement in her seizure control. I would love to say the later but only time will tell. Thank you all so much for your prayers!!

Also, I would love to get shirts made for the Epilepsy walk for our team. If anyone knows of a cheap place please send me let me know. Thank you all for all of the support we have already gotten for the walk. Emily just may raise the most money!!!

Epliepsy Walk

Join our team for the Epilepsy walk!

June 19th 2010
It will be at the Louisville Zoo.

louisvilleepilepsywalk.kintera.org

If the link does not work just type in the address and click on sponsor participant and type in Emily Rollins.

Our goal is 25 walkers and $500 but I know we get do better than that!!

Registration begins at 8am and the walk starts at 9:15am.

Hope to see you there!

quick

Emily had a good day yesterday.

Only 4 seizures, that we saw, all day and they were not in a cluster just single and all under 5-10 seconds. That is a pretty big deal!! The day before she had over 40.

The new nurse is working our great! She will be here Mon-Thur and we have another nurse that comes every Friday. They both just love Emily. How could you not love this face?!

Emily had pink eye a few days ago. We are still giving her drops for it. This is her first infection of any type. Believe it or not she is incredibly healthy. The only fever she has ever had was after her g-tube surgery and that is pretty normal. No ear infections or colds. We are def blessed in that department.

She is becoming more and more clingy. She LOVES to be held. We do lots of exercise with her and make her stretch but how can you deny her when you know she just wants to cuddle. She is so snugly too!

She is babbling so much too! I read her a book last night and she "talked" with me the whole time.

catching up

Guess I need to update this thing huh?

When we left Cleveland Emily's seizure were doing so much better, anywhere from 0-8 is what we saw. I say saw because she has many more that we don't see. Still that is amazing, much better than 40-70/day.

We did not know if it was the new med, increase in another or the steroids. Emily always does really well for a few days after a dose of steroids and yesterday we found out that it was the steroids because yesterday she had 41 seizures and she has already started this morning.

Every night before we go to bed we pray with Emily and we pray that the monster (seizures) will leave her alone, I pray one day I will see her last seizure.

So now that I got the bad stuff out of the way.....

We got our new full time nurse , well she is 4 days/week, and I really like her. I think she will work out great for us. I am so thankful too because we have had a few that I just did not feel comfortable with and now that she is here 4 days and then we have another nurse for Fridays that I really like too I feel like soon I will be able to sleep a little more :) yay!!

I had to get Emily a new bathtub because the one she was using was getting too small for her, it just was not made to hold a baby her size. I am on a few online support groups and they have been so incredibly helpful and I asked them what they did for a tub when their kids outgrew the baby bath but could not set up to use the big tub. Some one suggested a pillow like "bathtub" called safer bather. So we got it and it's amazing! I wish that I would have known about this before I had her. It is great for newborns and it is perfect for Emily. She really likes it too because she can stretch out. It holds her perfectly and it tapers slightly so that when she gets bigger it can just go under her back to support her head.

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!

cleveland update

First I want to start off by saying thank you.

Thank you all so much for all of the kind words, prayers, and very thoughtful messages. It really did help us get through a horrible day. So many people love and care about Emily, even complete strangers, and for that we are eternally grateful!

Emily had a MUCH better day today. We did not see any visible seizures but with that being said since she is still on an eeg we saw many on the screen, mostly when she is sleeping or when she is falling asleep or just waking up.

She was much happier today also. We got lots of smiles and some pretty good eye contact too!

She saw the ophthalmologist, who was also great, and he said she does have CVI. Her eyes are healthy and her vision is perfect, her brain does not let her see properly right now. When we get home with will start a vi son program for her to help her see better.

Yesterday we met with the neuro/metabolic specialist, he was so great! He explained what he thought and what we are going to look for. He thinks Emily may have an early onset of Rett's syndrome or cdkl5. She has actually been tested for cdkl5 before and it was negative but apparently the lab the preformed the test is not "the best" so if all of the other testing comes back negative we are going to re-test her for that one. He was explaining that finding Emily's disorder is going to be very difficult. He described it to us like this-finding a typo in a book with 20 trillion letters in it.

Finding what is "wrong" with her may not change anything, but if we do find out we can prepare ourselves for what is to come and some disorders have other problems that arise in the future like heart or kidney issues and we can already be on top of things if we have a heads up.

So blood and urine were sent off and we should hear something in 4-8 weeks.

Also we have decided to change her diet slightly. Stacy if you are reading this I am going to email you all of the new info this weekend :)

She is currently on a 4:1 ratio *4 fat to 1 carb* and the formula that she is on has artificial sweetener and some people are much more sensitive to it so we are changing formulas and ratios to see if that will help at all.

I will leave you with a few pictures.

This is Emily's very first hotel stay. She looks pretty darn comfy.

Her eeg leads on. She did so great with them, all 4 days worth!

bad to worse

I am blogging this because it is too hard to tell 35 people the same thing over and over. Please do not get your feelings hurt because we did not call you and tell you personally. We are choosing not to call anyone right now. It is too hard to say what we are going to say. If you would like, you may call us later tonight and ask questions but right now this is how we are choosing to update about Emily.

Last night she had a really bad night. Really bad seizures that would not respond to ANY meds and they were very strong. They were getting ready to send her to the PICU-(pediatric intensive care unit) when she finally stopped.

So that was our night-BAD

This morning the neurologist-neurosurgeon/epiologist came in to give us the results of her PET scan. Emily's seizures are from everywhere in her brain. She is not a surgery candidate. He also said from monitoring her on a constant eeg the past few days she has a very severe form of epilepsy. We already knew that but we had hoped that the PET scan would show that she was a surgery candidate so that was a huge blow.

She does not respond to most meds so we are adding some meds to her already extensive list. Once she is on the new drugs well we will begin to wean her off her klonopin and then use klonopin as an emergency drug instead of ativan and diastat because neither of those are working for her.

Our new plan, since she does typically respond well to steroids (for a short time) is when she starts a big cluster of seizures we will begin a round of 3 days or so of oral steroids-starting now because as I am typing she is seizing.

We are also starting a new drug zonagran (tonight), there are only 3 drugs left he thinks could work for Emily and this is the first one we are choosing to try. We will also be increasing her phenobarb because her phenobarb level is still a little low and in higher doses she does respond for a little while.

We will also be meeting with the keto dietitian to see if there is any tweaking we can do with the diet because she is still not in large ketones. That meeting is tomorrow.

Our new goal with Emily is less seizures, seizure freedom is not realistic right now.-WORSE

The doctors here are amazing and incredible. Sadly there is just not much else to do for Emily. Only time will tell what the future holds.

This is the hardest thing to deal with because there has always been a next step, many other drug choices and tests. Now we are down to 3 drugs and that is it. We have hit a brick wall and it hurts.

So please be understanding that right now we are grieving again. It may sound horrible to say that but we are. We are grieving the hope that we had in new meds, new doctors, new tests, new outcomes for Emily.

The reason we chose not to call anyone is because this is hard enough to type let alone tell so many people. Emily does have a lot of people who love her. Again, it is not personal. It is actually selfish and right now that is what Joe and I need to worry about, ourselves and Emily.

We will be coming home on Friday probably. She is not stable for travel right now, so hopefully we will be home this weekend. We love you all so much and are so thankful for all the support we get. Please keep our family in your prayers. This is just more difficult then I thought it would be.

I love Emily so much and to see her suffer like this is beyond fathomable.

Cleveland-day one

We are in Cleveland now and Emily is all hooked up to her eeg for the next few days. They want to see all the different types of seizures she has on the monitor so they may back off some of her meds temporarily and see what happens.

It is defiantly a different world here. Don't get me wrong it seems like a fantastic hospital and they have an amazing reputation for the most modern technology it's just not our little,everyone knows you, hospital.

The accommodations are a def lacking comparing to our home hospital. We have a very tiny room and we share a bathroom with another room. There is one shower on the unit and the door does not lock (ha!) Honestly I think we are just spoiled with what we are used to.
On a positive note, they left the hospital bed in the room so we have that to sleep on and a pull out chair/bed thing. The Ronald McDonald house is full so we could not get a room but they are letting both of us stay here so we don't need it now. They have a Ronald McDonald room on the floor for all the pediatric patients family's that has a couple computers, TVs, showers and laundry that we can use while we are here.

So enough with the complaining.....We met the neurologist up here and he is incredibly thorough, he knows his stuff. Joe and I were both very impressed. He agrees that something is going on with Emily's brain that is causing her problems, seizures, developmental delays, and low muscle tone, we just need to find what. He said he finds the cause in about 60-70% of cases but even if we find out what it is it may not change what we are doing. Finding a cause may just may be just that and not being able to fix anything.

That is pretty much whats going on so far, in the morning she has a PET scan done. Unfortunately, she has to be NPO (nothing to eat) after midnight and her test is not until 11am. I am freaking out a bit because I know she will be. We were 1 1/2 hours late feeding her earlier and you would have though I had not fed her all day! Also when she does not eat her blood sugar drops because of the diet she is on so we are going to have to watch the pretty closely. So needless to say I am a nervous wreck about this. She also has to be sedated for the test.

So tomorrow is going to be a long day. We also meet with the metabolic specialist tomorrow and they had me fill out a 10+ page packet to help them fill in on Emily. Maybe they will see something no one else has so far.

I will update sometime tomorrow.

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!