Wednesday, June 30, 2010

Fun in the sun

We took Emily to a public pool for the first time today.




We have a great pool not too far away from home, it has a couple of big water slides and a great splash area for the little ones.




I was not sure how she would do because she tends to shut down when there is too much of anything, sound, smell, light, ect.




I walk through some mist first to see and she cringed. We got into the big pool next and she did not like it at all! It was cool but not take your breath cold. That bottom lip came out and she started shivering.




I stayed in long enough to take a couple pictures with my best friend Angie and her little girl and then handed to Emily's nurse.




Emily has an eeg scheduled in the morning. We still have not seen a seizure since the Sunday before last. I can't wait to see what this says.

I thought this was sweet. He was just sitting there watching everyone.Emily was done! Just hold me!
Oh that face!
Emily's bff Ava. She is 3 months younger than Emily but has always been bigger. She is so cute!
Angie's son Jake. He is just such a sweet boy !

Monday, June 28, 2010

nothing new

There is not a lot new going on with Emily.



Seizure wise things are the same, no seizures and possibly spasms have returned.

She gets an eeg on Thur to confirm that.



Sleep is an off and on thing. Yesterday she did not go to sleep until 1pm. Yes that is one o'clock in the afternoon! Joe and I took shifts through the night and morning so that we could get some sleep.





She is smiling and laughing more too! She has also learned to "talk" very loudly to get our attention. She has us wrapped around her little finger so she does not have to do much to get it. :)





Isn't this bathing suit so cute! Thanks Aunt Shirley!

Swimming with mommy in the pool our friends from church bought us.



Pretty relaxed!


Thursday, June 24, 2010

bad blogger

Sorry I have been absent the past few days.
We have just been trying to regroup and figure out why Emily started seizing and having spasms again.
We are pretty sure constipation was to blame for her seizures. Once we got her to go on Sunday the seizures stopped and we have not seen any since then. The spasms are a different story.
They too started when she got constipated but they have not stopped. At times I think they are getting shorter and less frequent and then last night happens.
I ended up giving her medicine to stop her spasms in the middle of the night. It felt like they were going on forever and the poor thing could not fall asleep.
So Emily's nurse is here and I am going to go to bed now and try to catch up on some much needed sleep.
Thank you all for the thoughts and prayers!

Sunday, June 20, 2010

Brakes

The brakes have been slammed on Emily's good seizure streak.

On Saturday we noticed she was having very subtle spasms again, well we thought they were. As the night went on it was much more clear that they were spasms.

Right before her 9pm meds she was asleep and she started shaking her head back and forth, again very subtle, like she was saying no. We were pretty sure it was a seizure and luckily it was the only one and it only lasted 10 seconds.

Joe and I took shifts through the night to watch her. She did not sleep much through the night and in turn she has slept most of the day.

Today, more spasms, they are still very subtle. Sadly she has two seizures, well we are almost 99% sure they are seizures. Both were less than 15 seconds and were the same as the day before and both while she slept and they never woke her up.

Joe and I have been racking our brains to see what it could have been.

There are several different things it could be. She has been constipated ( sorry if this is TMI) she has not had a good BM in 2 days in spite of miralax.

She was out in the heat on Saturday. We did a good job on keeping her cool though. I did forget to give her MCT oil with her 10am feeding which brought her calories down slightly but her urine ketones and blood sugar remained perfect the past 2 days.

She has also been super gassy. When I vent her g-tube air rushes out so I am trying to vent her more often.

For the life of me I just don't understand her seizures. She has a virus with a fever of 103.7 and no seizures and now she has had seizures out of the blue with no reason what so ever. I guess that is just the nature of stupid seizures.

She had 22 days with no seizure or spasms. She is capable of doing it again! I keep telling myself this.
Happy Father's Day!
Emily has an amazing father. I know I am biased but he really is a great dad!

Being a parent of a child that has special needs it hard. Much harder than I ever thought it would be.

Emily does not show her love like "typical" kids do. She may not crawl, roll over or play with toys but we know she loves her daddy!

When he comes home from work everyday she hears the kitchen door open and she turns her head in that direction knowing her daddy will be walking in soon.
As soon as he says one word her face lights up and soon to follow is usually a big ole grin!

Thank you Joe for being the daddy that God has chosen you to be.
I love this song! You may not be chasing monster from under her bed but you sure do chase a "monster" from her!!
I love you daddy -pretty pretty!



Saturday, June 19, 2010

epilepsy walk



We participated in the Louisville epilepsy walk today and it was great! It started storming first thing in the morning which turned out to be a great blessing because it kept it cooler for a while longer. Once the sun came out it heated up pretty quickly though.

The walk itself was only an hour and we cut if short and went to the cool exhibits until the awards ceremony.

Our team consisted of 25 walkers and we raised over $1000!!

In total the walkers raised over $50,000 for the foundation!

We had a really great time seeing lots of our friends, family and even several nurses from the hospital.

Thank you all so much for spending your morning with us and raising so much money in honor of Emily!!


We love you all !

Emily ready for the walk. I tied a few fans to her stroller to keep her cool.

A few of Emily's nurses from the hospital. They are the best!!


Lots of people were there for Emily!


Britt and Stacy both came too!

Jakob kissing Emily. He is such a sweet boy.

Group picture! Well partial, several of our team had to leave.



Emily's nurse made these ribbons for everyone!

Emily with Joe's mom, step-dad, and brother.


That is her shirt on the front of her stroller. That was the smallest they had!! haha


Joe was playing!



Haha!!

Friday, June 18, 2010

Epilepsy Walk Notice

I just got this email about the walk tomorrow that I thought would be good to pass along to all of you who may be participating...

This Saturday is going to be a real scorcher, and the Epilepsy Foundation of Kentuckiana wants to make sure we do everything we can to keep everyone attending Walk Around Kentucky for Epilepsy at the Louisville Zoo as comfortable as possible. So, yesterday, Connie and I met with our friends at the Zoo and they made arrangements for us to use the Gheen’s Center, which is air conditioned and has tables and chairs, to hold the door prize drawing and awards ceremony! And, this building is close to the Meta Zoo Stage where the walk will begin and end.

Also, the Zoo has ample air conditioned exhibits for Zoo goers to go in and out of to take shelter from the heat. Best yet, is the Calistoga Spray Park for those wishing to cool down in the spraying water. Kids can bring their bathing suits to change in and out of…..which is just another perk to having our Walk at the Louisville Zoo!!

The Epilepsy Foundation will have plenty of water on hand, along with fruit, breakfast bars and yummy donuts. So, if you haven’t already made plans to join us…..its not too late! Go to www.efky.org to download a walk brochure or register online. Or, just come to the Zoo between 8:00 and 9:00 a.m., tomorrow to register to participate. The cost is only $25. You can make a donation in this amount or ask family and friends to support your efforts in the Walk. Our goal is to raise $1 for every child and adult impacted by seizures in Kentucky and southern Indiana, and with your help we can reach this goal of raising $90,000!!

On behalf of the Board of Directors and staff of the Epilepsy Foundation of Kentuckiana, we hope to see you tomorrow, as we work together to raise awareness and necessary funds to support the more than 90,000 children and adults living with epilepsy and seizures in our service area. Thank you!!


Deb McGrath

Executive Director/Co-Founder

Epilepsy Foundation of Kentuckiana

Epilepsy Walk

Let me start by saying I am so excited about the epilepsy walk on Saturday!

We have raised over $1000!!!
That is double our goal!!


We called and double checked a few things, first, everyone over the age of 2 must be registered. I suggest to do it online so that you do not have to wait in line to do it there.
Secondly, she said that everyone has to pay $25 to walk. She did say that if everyone registers together they will take the money that we have raised as a team and divide that amongst the walkers in our team so that everyone has technically paid their $25 but you have to sign in with our team .

We are all meeting in front of the zoo at 8:30am. The walk starts at 9am. Lynn has bought purple bandannas for us to wear so look for those.

I am so excited to see everyone. Joe and I are blown away at the amount of people that are sacrificing their Saturday morning, leaving late for vacation, and giving so generously all for Emily.

You all mean so much to us!!
Can't wait to see you there.


If you need my number just email me or message me on facebook and I will send it to you.

Wednesday, June 16, 2010

just don't know

I have not been blogging as much lately because I have actually been sleeping at night and that is normally when I update my blog.
For the past week Emily has sleep from about 10am-10pm. It's nice to sleep more. Unfortunately I have still have to feed her at 10pm, 2am, 6am and meds at 8am so I don't get to sleep straight through the night but it is still nice!
The other day I had really good eye contact with Emily too. You could tell that she was looking right into my eyes. It did not last long but she did it a couple times.
She has been very jittery and moving a lot the past week or so too. I am not sure if it's seizure related or it could be the increase in meds too. She has an appointment with neurology in a couple weeks so we will see what he says then.
Here are some more pictures from Emily's professional photos done by Shanna Simpson.





Monday, June 14, 2010

party pictures!

Emily's 1st birthday party was amazing!
We are so thankful for all the people who came to celebrate with us.
She slept through the entire party and as soon and we came home she was wide awake!
I took a few pictures but as soon as people started coming in I forgot to take any more so if you have pictures please email them to me.
Here are a few that I managed to take before the party started.
This cake is so beautiful. My friend Lynn made this for Emily. She also made my baby shower cake.




Rebecca and Emily

The whole Neal gang.



Joe's dad, step-mom, grandma, and brother.




4 generations.










My best friend Angie and her baby Ava.
Emily in her new car seat.




This is Annie her son Collin was also diagnosed with infantile spasms. It is so nice to have met someone that really does understand what we are going through! Collin has the sweetest smile and a very contagious laugh!!


This is a rattle Annie made Emily. Very few "things" make Emily smile. Mostly just me and daddy but when I jingled this she smiled and looked in its direction.





She also made her an egg plant one. How creative! Thanks Annie!



Emily got so many wonderful gifts. Tons of clothes, a few super cute bathing suits, a car seat and a pool for her to use her waterwaybabies neck ring in. It is not a huge pool but big enough for us and her therapist to get in with her.
Thank you each and everyone of you came or sent a card. You all helped make Emily's 1st birthday wonderful.
Hopefully I can get some more pictures of the family with Emily .

Saturday, June 12, 2010

more swimming

We have been pretty busy the past few days.
Emily is feeling much better. No more fever so the party is on!!!!
Yesterday we put her in her pool again and she did so great!!
I have never seen her move so much. I have a couple pics and a short video of her.
Can't wait for her party tomorrow at 3pm. If you need directions let me know.










Friday, June 11, 2010

still sick

Emily is beginning to feel a little better. She still has an on and off again fever. It's pretty low grade nothing over 100.

Joe's dad ( Lonnie), step-mom ( Brenda), and grandma ( Mae) all came down on Wednesday for Emily's party this weekend. They live over 4 hours away so we don't get to see them nearly as much as we would like. Joe's brother (George) also came over today too. We have a full house but I love it!!

It has been so nice to have them here. We enjoy their company and they are so helpful too! Lonnie mowed, Mae did laundry and cleaned and Brenda and I got to finish shopping for Emily's party. We had a pretty good day yesterday.

So as long as Emily is fever free for 24 hours than the party is still on. I will let everyone know how she is doing over the next couple days.

Wednesday, June 9, 2010

1st time for everything

Well Emily had her very first virus.
It started on Tuesday night with a low temp of 99.5. I went ahead and gave her Tylenol just in case it started to go up through the night and we went to bed. I should have known she was getting sick because I slept from 11:30pm-3am and that never happens!
When we woke up I checked her temp and it had gone up a bit so I gave her some more Tylenol. Around 8am I checked her again and it was 101. I made her a dr. appt and they checked her urine and blood and every thing came back perfect.
He chalked it up to a virus and said to call if she still has a temp in the morning.
When we got home I checked her again and it had jumped to 103.7 so into a cool bath she went. That and Motrin in addition to her Tylenol have finally broke the fever. Last check she was 97.
The fever explains her strange behavior. Since her fever broke she it not doing hardly any of the weird moving or shaking.
She has to be fever free for 24 hours to not be contagious so I am praying that it was just a 24 hour bug and we can still have her party on Sunday.
I guess it's a good thing she made it until after she was one before she had a fever or a cold.

weird

Today will be a busy day for us.
Emily is going to get a new g-tube, next size up. She is beginning to get a little belly on her.
She has been acting a little off the past few days and last night I took her temp and she had a low grade fever. She has been very jerky, sometimes it's like she just can't stop moving. She mostly does it when she has her paci, if you take it out she stops. It is very strange. It does not look like a seizure but I am sure it's some neurological.
So I have to make a few calls to her ped and neurologist this morning on top of dealing with the insurance company.
Emily and I slept last night from 11:30pm to 3am!! I could not hardly believe it!! I have not slept at night in so long! It was fantastic. I am praying that she is getting back to a good schedule.
She just woke her self up laughing! Gotta feed the princess!! Have a great day!
I have had the worst time with medicaid. Ugh!! That is a whole other post!!

Monday, June 7, 2010

impressive


Emily continues to impress me daily with the little things she is doing!


Yesterday, she was laying on the couch and her paci fell out and the nurse was getting ready to put in back in her mouth but Emily beat her to it and was trying so hard to push it back in her mouth! With a little assistance she finally got it.


Then she had OT , while I was sleeping, and Joe said that they laid her flat on her belly and Emily lifted her head off the ground for 5 seconds!! She also held a rattle in her right hand for a little bit.


The night before last I sneezed and she jumped and then stuck her bottom lip out because she was startled! She never gets startled or reacts to most loud noises.


All of these things are progress. This makes us very excited to see her learning new things!!


Everything on the seizure front is still going great!! I can't believe its been 11 days now. I honestly never thought we would see a week, now she is almost to 2 weeks!!! I pray that this lasts through her birthday party.


Speaking of which, just reminding everyone her party is Sunday at our church at 3pm. Everyone is welcome and if you are coming please email, call or comment so that I have a head count for dessert.


On Sunday I had plans to go out with my friend , Angie, to get some birthday party supplies and Joe was going to stay home with Emily so I did not have to take her out. He got up with her at 4:30am so that I could get some sleep before I went out. I am so thankful that he did that too!

It was so great to get out of the house but before I left they both fell asleep in our bed. It was the sweetest thing every. Of course I got picture of it!! I am a blogger now! Ha!!
My two favorite people!!

Is that not the sweetest picture ever!! They look so much alike here too.

Saturday, June 5, 2010

Great day


Yesterday was Emily's 1st birthday and it was a really good day!


She had several gifts mailed, dropped off and brought over to her.


Yesterday was also Carly's high school graduation. Carly and her family have been a very important part of our lives. Especially since Emily was diagnosed with epilepsy.

Carly is not your typical teen. She blows me away with the choices she has already made in her life. I am so proud of her and so thankful that Emily will have her as a role model. I love you Carly, you have been such a blessing to us!!! Congrats!!!

It is a lot of work to pack Emily up and take her any wear, that is why we appreciate when people make the effort to come visit us here. Lately it has to be something pretty special to get us to all pack up and go out. We would not miss this though!!!

A while back my aunt Shirley bough Emily a water way babies pool and we got put her in it last night. Lately if Emily is not being held or in her swing or asleep she is a little whiny. I would not say fussy just wants to be held. When we put her in the pool I was expecting for her to not like it but she was so content! She did not make a peep. She was so relaxed!!




Thanks aunt Shirley!!

Happy 1st Birthday Emily!




Get ready for lots of pictures!!!
Getting ready to leave for the hospital, the night before she was born, so that I could be induced.

One last belly shot.
I ended up having to have a c-section.


My family and friends who were waiting to meet Emily!
Minus Lynn who was taking the picture!


Our doctor telling Joe the c-section went great and Emily was perfect! (they had to knock me out when the epidural did not take on one side)


Emily Jean Rollins

Was born at 7:47pm

5lbs 9oz 19 in long



She was so little!! She was almost too small for her car seat! By the time we left the hospital she was down to 5Lbs 2oz.


Fussy girl!

Beginning to see a trend?

She loved to be swaddled!




Ha! I love this!





This is where our year changed. Emily's 6 month picture was taken in the hospital because she was diagnosed with infantile spasms the day before


Her 1st Christmas.

Her little face swelled because of the steroids she took to try and stop her spasms.








Her 1st Easter. She slept through the pictures!


Easter service at church.






Emily one year pictures. Taken by Shanna Simpson through The Littlest Hero's Project.

She did such a good job!!

Our first official family portrait!

Emily,

Happy 1st birthday my sweet sweet girl! I can't believe how fast this year has gone by! You weigh almost 19lbs now and are just over 24in long. You wear a size 3 diaper and are in 12-18 month clothes. You are growing really fast right now! You still have very small feet and wear a size 1-2 show. Your hair is starting to grow back and I think it will be dark brown. You have become such a Mommy's girl lately and if I am not holding you you say mom over and over. You love it when daddy hold you in his lap and you face out, it puts you to sleep every time!

I am so proud of how hard you work! You have physical and occupational therapy every week. I think you like PT better though. :) It always makes you really tired. This past week you have not had any seizures or spasms!! Praise the Lord!! You act like you are feeling good too! You are smiling a lot more too!

Emily, you are my dream come true, my greatest accomplishment, and just a little grin you from lifts my spirits like nothing else can. I know that the past 6 months have been hard. I pray daily that you would be healed and I pray that one day you will be able to read this and the rest of this blog and see how much we love you along with many many other people.

Being your mom is all I have ever wanted. I am so thankful for you! I love you Emily Jean!!!

I plan on printing this blog one day and if you would like to write something to Emily for her 1st b-day I will print those comments out too! p.s. still no seizures!!!